Actually I don't think incurable regional recurrence is more serious than lung or liver mets. Lung and liver mets are for many more immediately life threatening than regional rceurrence. I think your comment could apply to some presentations of bone mets. though I am loathe to set up any hierachies of awfulness.
In my case one of the problems is that I am triple negative and life expectancy for triple negatives with recurrence is worse than for some other advanced breast cancers. My latest oncologist also says that chemotherapies workless well on loco/regional recurrence than they do on major organs. But I have no other treatments..hormonals or herceptin to fall back on.
I was diagnosed with regional recurrence 27 months ago...I reckon if I had had spread to major organs I would be long dead now...that I'm not I am grateful for.
Jane, I said this to you in an email only last week:
"Your description of your condition demonstrates how regional recurrence in some ways is worse than mets in brain, lungs, liver or bones. If the cancer is restricted to one organ, there seem to be more treatment options that will manage it for longer and I suppose when the drugs stop working, the progression of the disease is more predictable. I may be spouting rubbish, but that's how it seems to me."
Seeing what I wrote in the context of what people have said here makes me realise that it is futile to spend time speculating whether one person's regional recurrence is somehow less scary and life threatening than someone else's liver mets (or even vice versa). Regional Recurrences and Mets are incurable. As Kay says, peer support is far more about individual approaches to illness than the degree of advancement of the disease as perceived by well meaning BCC people. And It is totally inappropriate for anyone other than a patient's medical professionals make judgements on how "advanced" someone's cancer is.
You are not in the least barging in..I think everything you write has a resonance for me...particularly that sense of being lonely...and often patronised. I really appreciate your support.
I think specalist breast cancer charities ought to be able to provide this information on all kinds of 'unusual but not rare' presentations (and also the rare ones.) Rather I find they focus on doing easier things over and over again...which reminds me anew of the 'How to tie a headscarf' video which BCC recently called for volunteers to take part in. There are apparently 10 or is it 20 versions of such a video already in the web. Where's the information on incurable regional recurrences or on the blood condition you have? It simply isn't properly there.
Many thanks to you stillstanding and to everyone else who has responded to my original and last posts.
I have to say I agree with everything thats written and know first hand that if you dont fit into a category of diagnosis or if your symptoms dont present in the 'usual'way, then either you are ignored or patronised.
I am not in the same position as others here in that my cancer has not spread (at this moment) and I do not have local or regional spread, (as far as I know) but I do have a bloods disorder that is directly accountable to cancer, in that my blood has a very rare reaction to cancer cells and thickens and clots, once this happens, it never 'turns off' so I am at a lifetime and daily risk of thrombosis, having already suffered multiple embolisms and a mini stroke, I am always aware of the danger , thats if the daily injections of heparin werent enough to remind me, ha!
Every part of my treatment/drugs has to be a test/trial, to see what will happen with me, as my onc has no experience of this and has to ask oncs who have limited experience.
Okay I realise that maybe I shouldnt have bought this onto Jane's thread which concerns regional recurrence and the lack of info thereof, but just wanted to say that I know personally that when someone with cancer 'presents' out of the norm, we are compartmentalised and its a lonely scarey place to be, because so few people are in the same position, others cannot understand or empathise with something that is not widely publicised or understood.
We may ask them who are supposed to be in the know, but they dont know!, we may trawl the net looking for answers, and never find any! but we keep looking, in the vain hope that we are not the only 'odd' ones out there.
Again, sorry if Ive barged in here, with something of no relevance,but I did feel a resonance with some of the posts.
I really hope that your pain is relieved as quickly as possible, and also that your entirely justifiable post is listened to and acted upon by BCC. We do not fit into diagnostic boxes.
Maybe it is time BCC started to think outside the box.
This forum is not jut an education for us, it should work for them as well.
Jane is a first hand representative of regional recurrence and most of what she writes can only help others who come along with the same condition.
I get so cross and frustrated.
Thinking of you Jane and hope you are soon pain free.
Thanks so much Belinda. No I won't hold back. You are one of the women who has always been 'there' since I started using the forums in 2004.
Oh and for information I have been in pretty much unmanageable pain for much of the past 11 weeks...funny how we all edit. Have now changed it on my post above! And of course I have spent days in bed on chemotherapy.
Hi Jane...I hope I understand your well founded frustration (and productive anger) as you seem in a worse place than myself..me being a nearly 6 years living with mets woman who knows one spot of bone metasteses is still terminal. We don't, hardly ever, tick all those little boxes..meet the BCC criteria. I can't begin to imagine how you've been living every day with unmanagable pain. Since my mets diagnosis I've had one day in bed. I don't feel I need to 'protect' you from my experience. Please don't protect me from your's.
I'm bringing this to the top again because the seething with which I started this thread has now become full scale rant at the inadequacy of information and support for those of us 'just' with regional recurrence. But rant suggests an emotional over the top behaviour and I would prefer to come across calmly and rationally...that my anger can be productive rather than unproductive.
There were elements of Diana Jupp's reply which I found both patronising and wrong.
Look at this where she says for example:
""Although as you state, you have the same concerns as others with secondary breast cancer, we have found that in some of our services those with more advanced cancer and often nearer to the end of their life have not felt comfortable when others with less advanced disease are included, often feeling that they need to ’protect‘ them from their experiences.""
Since I started this thread my cancer has grown. I have been in unmanaged pain for 11 weeks now....for the last week I have been housebound because the pain is too bad to tolerate when I am moving (and no this is not for want of trying by good hospice staff.) My last CT and MRI scans delivered the good news that I still have no mets. in my lungs, liver or bones. It also delivered the bad news that as the tumour near my jugular vein is growing I am in danger of a stroke.
Those with spread to major organs or bone are not necessarily nearer the end of their life than those with regional recurrence. I am living with the reality that a sudden stroke may kill me soon and that I am unlikely to live more than a year, probably less. I feel I have great support arround me, from partner, friends and friends met in the secondary forums. But there is simply nothing in BCC'S publications which helps me..your secondary infromation simply excludes me and otheras with similar recurrences, which I think is shocking. I so wish that someone at BCC would run with this issue, improve your services for those who will come after me and the other women who have responded on this thread.
As this site is supposed to be there to support our needs what justification is there to prevent a small number of people from using part of the service that would provide both them and the current users with benefits.
Do people need to provide a doctors note to get onto live chat, I can't believe BCC are making such a meal of this.
And if we were in that orderly queue, I have just been "guilty" of queue jumping in a big way! Last week I was "securely" in remission with chemo controlling my liver mets. This week I know I have active growing tumours in my liver, and not that many treatment options left. That is the unpredictability of cancer and why it is not helpful (indeed quite dangerous) to imagine it as anything else.
First of all thanks to Deirdre and Kay for your comments...I really feel you are 'getting' what I've been saying...this is what peer support is all about.
Diana: thank you for your reply. I would be pleased to be involved in any development of your resources and materials. I think its important that accurate inforamtion is integrated into all your publications...a separate fact sheet may be useful, but improvements are needed in the information in your secondaries materials too. Personally I think it would be a waste of resurces to even consider a separate live chat as the numbers would be too small to make it viable...and a separation again implies a difference in concerns which is artifically created.
When I got your reply Diana I felt really quite upset by your remarks in the paragraph about people with 'one spot of bone metasteses'. As Kay and Deirdre have pointed out the progression of advanced cancer is always unpredictable and uncertain, and you fail to acknowledge the significance of this. I am sure your intentions are meant well, but your comments imply that BCC staff have a gate keeping role in deciding whether I and others are terminally enough to talk to other terminally ill people. We are not all lined up in an orderly queue waiting for our turn to reach the exit.
I'd like to echo what Kay has said so eloquently. SEcondaries are unpredictable and those with just a bony spot may, within a very short time, become those with multiple liver mets. There are people who have belonged to this forum who have gone from diagnosis to dead in a matter of weeks having started with "just" a spot. There are others who have had extensive visceral mets at secondary diagnosis who are still around a couple of years later.
I think people with secondaries (and I inlcude in here the incurable regional recurrence people) have questions and fears that are pretty similar - Can I live with this? Will I really die from this? How do I tell others? Who can help me? How will I cope with pain, disability, disfigurement? How do I cope on an emotional and practical level? How will my family and loved ones cope? What treatments are there out there? What treatments are in the pipeline? What support is available? Who can I turn to?
I understand the point about not wanting to scare the just diagnosed one bony met brigade with the hairless and yellow almost dead. But, personally, I am so glad to have met with those whose cancer is at a different stage to mine. I am glad that I haven't just been allowed to see others at about the same stage. And I have drawn most of my hope and encouragement from people at an advanced stage of breast cancer who have shared so willingly with me their stories. I met DippyKate, for example, long before my secondaries diagnosis. She showed me it is possible to continue living - really living - right up till the very last stages. Others have shown me how to die with with dignity. How to continue to laugh at the world, despite the knowledge that their time here was nearly over. It would be dreadful to erect barriers between us.
I agree with Jane - the information available about regional recurrence is shockingly bad and I am glad that BCC is doing something about it. And yes, there is a place for people with this specific form of spread to meet, discuss their illness and treatment and so on. But let's not have too many separations. Inclusiveness surely offers more to those who are now classed as incurable than exclusiveness?
I would not normally post on this thread as I do not have an incurable regional recurrence but do have secondaries in my liver. So apologies if I am intruding but I did want to pick up on something you said, Diana, about the difficulties of providing a service that meets all needs. My concern is clearly not about the fact that you are trying to provide such a service but that the deciding factor seems to be the dx you have. Your sentence " the spectrum of secondary breast cancer is very broad, from incurable regional recurrence and one spot of bone metastases to brain, lung and liver metastases" is given as the reason why providing such a service is difficult and that does worry me. My mets were diagnosed 2 years ago and initially I did spend time "looking" at other people and thinking they were "better off" or "worse off" than me. I quickly learnt that cancer is so unpredictable that that can only ever be a snap shot at that particular moment. Several of the people who appeared then to be in a much better position than me (maybe with "only one spot of bone metastases" are now dead. Some of the people with incurable regional recurrences will die in a shorter time than those diagnosed with secondaries - that is the unpredictable nature of cancer.
For me it is about the approach the individual wants to take once they have a terminal dx rather than the actual nature of the dx. I have met both JaneRA and Marmite and have actually far more in common with them in terms of treatment, wanting to know what the next "stages" will involve etc, than I do with some others with a secondary dx. JaneRA has openly posted on the forum about the treatments she has had and the fact that the treatment options have run out for her. This is clearly something that concerns many people with a secondary dx. I cannot see why someone who has an incurable regional recurrence should be treated in a different way to those with a secondary dx - the issues are the same.
As I said, for me the difficulty you must indeed face when looking at services, is the approach the individual (whatever the dx, however near to or far from death they are - if indeed it could be predicted)is taking. I have always found my only way of coping with what the future might bring (and indeed will bring in the case of dying from bc) is by having as many facts about it as possible. I know there are others who would take a different approach and don't seek such information and I think this is where you may have had feedback about needing "to protect others from their experiences". The two groups do not mix well. I have been in that situation myself where I have wanted to talk about issues affecting me but am aware there are others present who clearly would rather not face such issues at that time.
Not sure how clear I've been, so will try to summarise! As someone with a secondary dx I would have no more of a problem being involved in a group with someone with an incurable regional recurrence than with someone with a secondary dx - the problems potentially lie with individuals' approach to their illness. A similar approach in a group is what matters so that open discussion can happen, not the actual dx or indeed how advanced the cancer "appears" to be at that moment.
Thank you for your post and your questions. I have followed your points up with my colleagues in the clinical, service and information teams.
You have raised a number of questions that I will address in turn.
Firstly, Breast Cancer Care agrees that although, as you state, regional recurrence is a less common diagnosis, we do take it very seriously and agree with you that as a specialist breast cancer charity we should provide information and support for those with a regional recurrence.
Having looked at our information on the website and in print we also agree we can do more. We do include information on regional recurrence in both our secondary breast cancer booklet and our information on follow-up. Following on from your concerns we are also reviewing all our other literature to include relevant information, where appropriate, on regional (and local) recurrence. (Your point about the prescribing information in the Navelbine factsheet has been noted for the next update.) We already have a web page on regional recurrence and we have added an agenda point to the next meeting of our Information Development Group in June to discuss the possibility of a factsheet on regional recurrence.
This group meets twice a year to review our current information output (both in print and online) and to set priorities for the coming year. It also responds to requests for new information from our service users, healthcare professionals in the NHS and from our own staff and volunteers. The group is also informed by our Breast Cancer Voices Network, which I believe you have been involved with before via the Secondary Taskforce.
If the Information Development Group agrees that a standalone factsheet on regional reccurence is needed (as opposed to strengthening information on this area throughout our existing portfolio of print and web information) I suggest passing your details to the publishing team so you can act as one of our lay readers on this information.
With regards to attending our services for secondary breast cancer, we are very keen to be able to provide you, and others with regional recurrence looking for support, with services that are right for you. As you know the spectrum of secondary breast cancer is very broad, from incurable regional recurrence and one spot of bone metastases to brain, lung and liver metastases. In this sense it is often very hard to provide a service that meets all needs. Although as you state, you have the same concerns as others with secondary breast cancer, we have found that in some of our services those with more advanced cancer and often nearer to the end of their life have not felt comfortable when others with less advanced disease are included, often feeling that they need to ’protect‘ them from their experiences. Therefore we try to select members of the group to be at similar stages, if possible. We also do this in other areas of our work, for example with our Younger women’s forums we try to make sure that if a very young woman in her teens or early twenties wants to attend, we will wait until there are others more similar in age rather than putting her into a group of women in their early forties, for example.
Therefore, if you would like to attend one of our services for secondary breast cancer, our secondary breast cancer nurse specialists would review the make-up of the group and make a judgement call on each group as which one would be appropriate to join. But you are most welcome to request to attend and we will work with you to find the best and most appropriate support service – we have a number of SECA support groups, the telephone support groups and the living with secondary breast cancer courses which are over two days.
In addition to this, having talked to the Clinical Team, we would be very interested in piloting a Live Chat group for those with regional recurrence. Please do let us know if you are interested in this as a service.
Another service we provide is the volunteer matching service. This is where we ’match‘ a trained volunteer with similar diagnoses and treatments with a client, in order to provide ’peer support‘. Currently we do not have any volunteers with regional recurrence, but do have a limited service with volunteers with secondary breast cancer. If you would like to talk to someone with secondary breast cancer we can arrange this for you.
Finally, I would encourage you to continue being involved with Voices, the users group that feeds into the direction of the organisation and helps us design our services and our campaigns. We have nearly 600 active members that we consult on a regular basis.
Your concerns about Breast Cancer Care not providing adequate enough information and support around regional recurrence have been heard and I hope that you feel that we are beginning to respond to your expressed needs. Below I list the relevant contacts for the services to which I referred.
With all best wishes,
Director of Services
0808 800 6000
i am getting my results on 6th may if i am told i have a secondary cancer then after reading your thread what you are telling me is i have incurable cancer and will die within a approx time span and all treatments are just a delaying mechanism.
I agree with your arguments for BCC to deal with relevant topics and leave the scarf tying to us
I'm bringing this up to the top because I really would like a reply from someone at BCC to the questions I asked in my last post.
Those of us with incurable regional recurrences may be in a minority but surely a specialist breast cancer charity is best placed to ensure that minority concerns are reflected in your policies and your information.
I really am intertesed in helping to improve the information and support which BCC can offer to women such as myself and the others who have posted on this thread. I could make very concrete suggestions about how to improve your literature...could write a first draft of it all for you myself in a day or two..but no this will go to committee after committee and nothing much will change. Its complicated but not that complicated!
I know it may seem unconnected but I really do feel furious that BCC can find the resources to develop a video on tying a headscarf (note that no one has replied on the thread about this) when there are dozens of such resources available, but is lukewarm about developing resources where there are none.
Please someone at BCC reply.
Thanks for your message. How can we be involved in this process you describe to improve information and support? Indeed what is the process going to be? I e-mailed you a few ideas well over a year ago and no one responded in detail then so I'm not very confident about the future.
I have lots of ideas about how you could improve things but will I be dead by the time you get round to doing any of them?
In the meantime perhaps you could answer these questions:
1. If I or another woman with an incurable regional recurrence wanted to join Live chat for secondaries would we be welcomed or told to go away?
2. If I or another woman with incurable regional recurrence wanted to join a BCC support group for women with secondaries would we be welcomed or told to go away?
We have read all your feedback on this thread and understand this is major issue for many of you. You have made very valid points regarding the similarities of some of the psychological and physical issues faced by people with both regional and secondary breast cancer, and that the treatment and prognosis can in some cases overlap.
As a breast cancer charity we completely accept that despite the complexities surrounding this diagnosis, information and support should be accessible to all and we are currently looking at how we can effectively address the information and support needs of people with regional recurrence of breast cancer, in our publications, service provision and also our use of terminology.
I was troubled by what Jo at BCC said in reply to our posts.She seems to have missed the point completely.
I now unfortunately tick all the boxes for secondary bc, as after 3 years of regional recurrances, treated with several chemos etc. mine returned for the forth time wth metasteses in the lining of the heart and lungs which are thankfully being held at he moment with vinorelbine, but even that has started to fail as a new lump appeared on my neck (the other side from previosly) and is growing.
So how they can still insist that regional recurrances are not the same as secondary cancer beats me.
My cancer is not going away, the lumps in my neck and chest are a constant palpable reminder that I have cancer and the Onc team ate quite clear this is a a terminal condition that may, or may not (1 down on that since Dec) respond to chemotherapy treatments but will not be cured, ever.
The statement 'Both of these types of recurrence will need further treatment, but they are not secondary breast cancer.' seem to intimate that it's treatable in so much as is curable whereas secondary breast cancer isn't, it is in my case (and the other who have posted) not the case.
I don't want either or them, but I have got a regional reccurance and as Bex and JaneRA have pointed out, they are in a multitude of ways the same thing. I felt really misled by the 'light' approach to what happened to me, and deeply upset when I found out the reality was not so fluffy.
I to don't understand why such a distinction is made, so hopefully there will be a response to this from BCC.
Dear moderator (Jo)
Please could you ask an appropriate person to reply to the points which bex1 and I have made. By this I mean a proper reply, not merely quoting something from existing publications...I know that none of them address the issues we have raised.
And yes the statement about treatment controlling secondaries/recurrences is naive. Over the last two years the following tretaments have failed for me: xeloda, vinorelbine (tried twice), carboplatin, gencitibine, taxol.
I totally agree Jane, and I think BCC are missing the point slightly.... Why are BCC so keen to make the distinction between a regional recurrence and secondary bc and therefore imply that it is less life threatneing and therefore less serious?
Just to respond to a couple of points they make:
"Both (local and regional recurrence) will need further treatment but they are not secondary BC'. Possibly, but the parallel in that both will require CONTINUOUS treatment until death is surely more poingant. BCC makes it sound like a bit of chemo will cure a regional recurrance!! Let me say again, my onc told me in no uncertain terms when my first 'small 'lump on my neck was found to be cancerous that I COULD NO LONGER BE CURED. Now, in my book, that means at some point it will kill me!
Other parallells between Regional recurrance and 'true' sbc:
Both are incurable
Both will require treatment up until death
Both require the same treatments and support
Both conditions bring about the same fears/pains and often the symptoms can be worse.
To go even further, I would say that they way some regional recurrances exhibit are worse than 'true' scb as the way they present are very unusual and very hard to treat, as well as the symptoms being very visual and distressing a well as painful. Anyone for a facial disfigurement to go with their incurable cancer??????
Lastly the point BCC make that 'In all cases treatment can be controlled or treated, sometimes for many years' I find to be rather naive. In my own case alone I have recently had two different chemotherapy drugs fail. My disease in my necky/face skin and parotid gland marched on untouched by capecitabine, then docetaxol. Oh and then bam, I've got a brain tumour now - can I finally be taken seriously now??? SOME cancers can be controlled or treated for many years, others just run riot and are relentless against any treatment whatsover - yes even regional bc.
Equal rights for all incurable cancer patients I say!!!
Thinking about this again the point I want to make is that people with incurable regional recurrences have the same needs of information and support as people with a secondary diagnosis. I was very concerned to read that marmite has had difficulties accessing support designed for women with secondary breast cancer. Myself, I have joined BCC secondary events but have felt I had to argue a special case for myself which should not be so.
People with secondary breast cancer and people with incurable regional recurrences share the following features:
Cancer is not curable but may be treatable and manageable for a while
Cancer is ultimately terminal
Treatment will be an ongoing feature of living with cancer
Cancer will produce specific symptoms and problems depending upon its location (though in early days of diagnosis there may not be symptoms)
Beyond these features there are many many differences among those with advanced disease. Some advanced cancer is treatable for many years; some is not. Some advanced disease will spread very quickly, some will not.
My concern is that by emphasising the differences between secondary breast cancer and regional recurrences(based on the phrase "spread to another part of the body") that those with regional recurrences are somwhow treated as though their condition was 'less serious', and therfore not worthy of targetted support.
This is a complex area (I know there are many local and some regional recurrences which can be curable) but surely a specialist breast cancer charity should be able to understand those complexities and make appropriate support available and accessible.
Thank you for posting this. Unfortunately your reply does not address many of the issues people have raised on this thread.
May I just take up one of the the misleading things your information says:
"It is important to remember that having a local or regional recurrence of breast cancer is not the same as having secondary breast cancer (sometimes called ‘distant recurrence’ or metastases)."
What is meant by this statement? In what ways is a regional recurrence which is incurable and terminal not 'the same as' having secondary breast cancer? Secondary breast cancer in any case covers a huge range of conditions...from the woman with limted bone metasteses to the woman with widespread disease in several major organs. The woman with the former is 'not the same as' the woman with the latter but both are called 'secondary' breast cancer.
Your reply does not address the psychological issues associated with having an incurable regional recurrence (e.g. prospect of premature death...just like secondary breast cancer) Nor does it address the ways in which regional recurrences can affect us physically..paralysis to the face, loss of voice, tumours pressingon oesophagu etc.
Why did my GP readily agree to sign From 1500 for DLA special rules if the cancer I have is not terminal?
I think the problem is that a mechanistic focus on technicalities of stageing categories does not readily meet the support and information needs which real women with real regional recurrences have.
Hi all, after following this thread over the Bank Holiday weekend I asked if the nurses could respond. - Jo, Facilitator.
Just to clarify: Breast Cancer that comes back in the same breast or near the surgery scar is called local recurrence. When it spreads to areas around the breast such as the skin, the muscles on the chest wall, the lymph nodes under the breastbone (sternum), between the ribs or the nodes above the collar bone (clavicle) it is called regional recurrence. Both of these types of recurrence will need further treatment, but they are not secondary breast cancer.
You may be interested in the following link which we have recently added to the information on our website to try to clarify the differences between local and regional recurrences and secondary breast cancer:
Secondary breast cancer occurs when breast cancer cells spread from the first (primary) tumour in the breast through the lymphatic or blood system to other parts of the body. You may hear this referred to as metasteses, advanced breast cancer, secondary tumours, secondaries or stage 4 breast cancer. When breast cancer spreads, e.g to the bones, it is called secondary bone cancer in the bone. The cells that makeup the tumour in the bone are breast cancer cells.
Usually secondary breast cancer occurs some time after the primary breast cancer but sometimes it may be diagnosed at the same time as the primary breast cancer or without any symptoms of the primary breast cancer.
The most common parts that breast cancer spreads to are the bones, the liver and the lungs. It can also spread to the brain, although this is less common. Breast Cancer Care has fact sheets about each of these secondary cancers that discuss diagnosis, symptoms and treatments in more details.
In all cases the recurrence can be treated and controlled, sometimes for many years.
Most people diagnosed with a recurrence of their breast cancer (both local,regional or secondary breast cancer)want to know how long they have got to live. This is difficult to predict as each person is an individual and no two cancers will behave in the same way. Your specialist will have an understanding of the likely progress of your cancer and can talk to you about what you might expect.
If you would like to discuss any of this further, you are welcome to phone our helpline and speak with one of our experienced nurses or trained helpline workers.
The freephone number is 0808 800 6000 (for Typetalk prefix 18001), Monday to Friday 9am to 5pm and Saturday 9am to 2pm.
Thank you for contacting us. Please contact us again in the future if you have any further queries.
I wasn't expecting so many detailed responses...and I think the responses just underline so much how we are being failed in the information which is available.
Bex: so sorry to hear about your brain tumour. I think the word 'imposter' well describes what I sometimes feel in relation to that question: Do I/don't I have secondaries? My own oncologists have always been very clear with me that the active and widespread cancer in my supra and intra clavicular nodes was serious stuff, incurable, and yes terminal too. In my case all standard treatments have now failed and my tumours are getting larger. Both hospice nurse and oncologist have described how yes I can die of unchecked regional spread...yes the expectation is that my major organs will eventually be affected...just as the expectaion is that anyone with first metastatic breast canncer will also get further spread before they die...but the regional tumours can kill.
Bex: your facial paralysis sounds ghastly and all the worse I imagine for the lack of information. As you know in my case the tumours have damaged a nerve in my eye so I have a droopy left eye (horner's syndrome). This fortunately isn't too noticeable as I wear glasses. Far more distressing for me has been the loss of my normal speaking voice...caused by tumours damaging my left vocal chord. My voice has been partically restored after an operation but it is still very weak...and a permanent public daily reminder of the damage cancer is causing.
I understand that a few years ago the American system for stageing breast cancer was changed and breast cancers which had spread to supraclavicular nodes, which used to be staged as stage 4 were now staged as Stage 3c. I think it is this which has caused all the problems for the cancer charities in providing accurate information and support and it has a very detriminetral effect on us.
What do we want from BCC? I intend to write again, highlighting this thread and suggesting some useful things they could do: like acknowledging incurable regional recurrence in their literature on sec breast cancer; separate leaflets on local and regional recurrences; ensuring that all information is accurate...eg.' information leaflets on drugs. There's quite a new leaflet on vinorelbine for example which says its a drug used for sceondary breast cancer and failing even to mention that its used for regiobal recurrences (another example of regioanl recurrences being edited out of existence.)
Psychologically I have really struggled with my 'unusual presentation'. I'm sick of being told by uniformed bystanders that I'm not terminally ill when I am. I've now stopped treatment as the standard treatments failed....I have pain from my tumours etc etc..what is it that makes me different from anyone else with secondary breast cancer? Ironically too, I know my own prognosis is much worse than say someone with solitary bone mets which are currently well controlled on biophosphonates and hormonal treatments. But that person fits the charity secondary breast cancer box and I don't.
Just after posting the above I went onto the current issues forum and see that BCC are looking for volunteers for a video about how to tie a headcarf...oh I feel so cross...how come time and resources are so easily found to do something so trivial, yet I bet when it comes to writing a simple leaflet on regional recurrences...or goodness a video even...nothing will happen for months and months... if ever. Grrh...priorites wrong somewhere.
I guess part of the problem is the limited amount of knowledge I had of healthcare before all this was take some tablets or treatment and what was wrong went away, with secondary cancer it doesn't work like that does it. You take some treatment but it's never going away and that is hard to come to terms with.
Although, a part of me still believes I will be 'cured' even though that is impossible, the natural instinct for invincibility is hard to overcome, expecially as I am not badly sick yet.
Cancer sucks and I don't want to die.
Its such an ordeal isn't it? This trial and error process, and endlessly waiting for results, and just bloody not feeling well the whole time!!!
THanks for the info, sorry to hear the carboplatin failed, and really hope the taxol and gemcitabine work for you.
Do let me know how you get on.
Love and hugs
Hi Bex1, sorry for the delay in replying am working overseas at the moment and it's all a bit manic.
I am so sorry to read what is happening to you, it sounds awful and the stangling thing is one of my fears as the supraclavicular tumour is pressing on my throat and it's an awful sensation. I am expecting that it will cause a lot more damage as it progresses and although it's very scary to hear what is happening to others, without any decent information out there this is all we have to learn from, so thank you to all who have shared, forewarned is forearmed I guess.
Re my treatment, when I had the lymph nodes that were hurting under my arm removed in October, a CT scan showed no spread at all. It took 2 weeks to start chemo due to the surgeon who was putting the portocath in being away, the weekend before the port being fitted a lump in my neck had appeared.
I continued by getting 2 doses of carboplatin, but the lump kept growing, so I was rescanned and it was decided it wasn't working. I was then swapped to Taxol / Gemcitabine in Jan. This has helped a little although I am pretty sure it's all growing again and it's scaring me witless. Missed two weeks of chemo due to a cold week 1 which developed into a nasty chest infection week 2.
Just had dose 4, so 2 more to go. Then will rescan to see what is happening, if it has shrunk enough then they may give me a break although to be honest I don't feel confident that is going to happen but I am doing ok on this treatment plan.
Hope that helps.
Hi, this is my first post since having brain tumour removed March 11th 2009. Devastated obviously especially told 3-5 months to live. But my wonderful oncologist is going to throw everthing at me, have already had 3/10 whole brain radiotherapy, and has chemo lined up for me in May, to try and buy me and my family some time, who knows 2 years!
I dont have IRR, I have liver and bone mets so situation unfortunately is totally clear for me, i hope you dont mind me dropping in on your thread,
Having read this thread it seems that IRR is a really obvious thing as well, although I hadn't considered it. It seems obvious now that if it can't be removed, only controlled for a time by chemotherapy, its incurable and thats it it will progress at some point ....I think BCC should think again if they are saying something different,
Nice of your onc to be so sensitive on this issue!!!! Honestly, I had one registrar (in the early days when I couldn't handle this sort of thing) tell me I should get on my knees and start praying! My onc called him a tw*t.
This is MY understanding of the situation as gleaned from my onc, my nurse, and various tit bits from websites (ie very subjective and not necessarily correct...!!!)
ANY spread beyond the axillary lymph nodes is INCURABLE SECONDARY BREAST CANCER. (Sorry BCC, I think you're wrong). I was told mine was incurable when a node in my neck proved cancerous. On that point my onc was clear, and they weren't aware of any other spread at that time. Cancerbackup also have a section on 'Secondary Breast cancer in the lymph nodes' (not that it tells you much else- but at least it calls it 'secondary'!)
In terms of 'staging', I would say as it puts us in the Stage 3b category, as stage 4 is when it has spread to other organs and they give you the 'standard' prognosis of 2 years tops.... (not cos thats necessarily the case, it just seems to be 'procedure' - they don't really know...). I would say this needs looking at tho.... is the skin not the largest ORGAN in the human body?????
The point is I suppose, that regardless of spread to other organs or not, we are always only one scan away from being given a terminal diagnosis so why should it be taken less seriously? The way I have always seen it is that RR recurrance is just the next step towards terminal cancer - just some people miss out that step. Oh, and when I have said this to people thats 'being negative', no its not its REALISTIC!!!!
Thanks for starting this thread Jane. Didn't realise there were so many of us in the same boat.
I also am in this boat. Originally diagnosed in 2001, Ok for 4 years and then had Regional Reccurrance in clavical and neck nodes on left hand side in 2005,2006,2007 with various treatments, chemo and surgery. Always a bit vague as to whether this was secondary or not, BCC said it definately wasn't and therefore couln't join anything for secdondary BC. Onc told me, when I asked if it would come back, said he thought the cards were stacked against me.
It came back with pericardial and pulmonary effusions in oct 2008. Been on vinorelbine since then now on 9th cycle. Lungs now clear and fluid much less round heart, and generally not too bad but do get very tired.
New lump appeared on right side of neck 3 weeks ago, which is growing but did not show on CT scan. Onc says it is the chemo begining to fail, but we are going to carry on for the moment as it is working so well on major organs. Also have a lot of lymph node involvement behind the sternum (can,t remember the medical term for it!)
When I had the problems in October,onc wrote to my Gp and said this is the first real evidence of secondary spread.
I have also contacted BCC several times over the years about information on Regional Recurrace and got nowhere.
Just to respond to a couple of points raised by PatricaM and Jantharra:
Patricia, yes I had lumps quietly growing in my neck, but being controlled by capecitabine for about 4 years before it spread to the skin. It started out as a small patch of itchy red dry skin. (I had had rr in the skin on my chest wall previously so I immediately recognised it as 'breast cancer in the skin' (a phrase you'll be lucky to find anywhere else!) as opposed to just a 'rash'.
I was fairly confident that starting Docetaxol would sort it out but after 3 cycles it was clear that the cancer was marching on regardless. Some areas responded really well (the skin on my chest wall and clavicle nodes) but the neck area showed no response at all. As I say, it now covers a region from behind my ear, down my neck (not quite to my collar bone), and round to my voice box. It feels like a solid mass of fused tissue, and is red and weepy and sore. I have just finished 10 fractions of radiotherapy and am waiting to see if this has worked.....(no sign yet - any ideas how long these things take? Last time I had radio was as a 'mop-up' exercise after initial treatment so there was nothing to 'measure').
Like I said, my fear is that if nothing can stop this spread around my neck I will be slowly strangled to death - sorry if this is frightening you Patricia. (Need to speak to onc on Mon wk and express these fears).
Jantharra, I noticed you have had Carboplatin which is what my onc said would be the next move for me when I have recovered from radio.
I am slightly confused tho, cos first you said I didn't work, then later you concluded that there had been a partial response.
Can you let me know how you found carboplatin ie side effects etc. How well or not it worked. And do you know what made your onc choose that particular drug? I looked it up and although it 'can be used for other cancers', it's main use is for ovarian and lung....... I would have thought there were more obvious options to try first? (well, in my case anyway, I don't think I've exhasuted all the BC drugs yet!!). I will ask him the same thing, but just wondered what your onc had said. Maybe there's evidence of this particular drug working on the skin? WHO KNOWS??? If they do, they certainly don't like to share!!!!
Jane, I'm going to email cancerbackup/macmillan with the same question re lack of info regarding regional recurrence/skin disease.
Best wishes to all of you.
My oncologist said exactly the same thing about my spread to lymph nodes in neck - that he had not heard of anyone dying from cancer in the lymph nodes. On the other hand though he has always treated my condition as terminal, with the emphasis on holding on to quality of life for as long as possible. His concerns however mostly seem to be about spread to major organs and each scan report discussion starts with "well the good news is still no spread to major organs", although I know that he expects this to happen. He also wrote to my GP and indicated a 2 year life expectancy. I am irritated that he seems to be unable to suggest much to help with the discomfort of lymphatic obstruction and swelling and up to recently didn't even seem concerned about the increased size of the lump in my neck or the red shiny lumps appearing around my collar area (Bex1 is this what you mean by half collar of skin disease?)The lymph node in my stomach which is affected is always brushed off as "small" - but it still worries me. I have no idea what this means or what it may lead to. I get so fed up with the assumption that we are not able to understand/don't want to know about our condition, and I suspect that I am not the only one who then goes off to desperately scan the internet for some kind of information and subsequently end up scaring myself half to death. Because he always seems so laid back I have put off seeing him for as long as possible. Also I don’t want chemotherapy unless absolutely necessary but I suspect that this may now be the case. I have an appointment on Tuesday – anyone have any ideas what questions to ask. My husband can’t come with me this time so I really need to psyche myself up to deal with whatever....
WE DESPERATELY NEED THIS EXTRA INFORMATION ABOUT REOCCURANCE IN DISTANT LYMPH NODES AVAILABLE TO US IN A SENSIBLE AND EASY TO UNDERSTAND FORMAT – BCC - IS ANYONE LISTENING?
Up until being told I had a brain tumour a couple of weeks ago, I too often felt like an imposter!
I think I have told you before (sorry if I'm repeating myself) that I lived with affected lymph nodes in my neck and chest for roughly 4 years without any adverse symptoms. I recieved chemo (capecitabine) every now and again to keep it in check, but wouldn't have really known i was ill (lucky me).
Yes I was told it was incurable at the time, but very little about what to expect really, so I supposed I have spent the last 4 years veering between feeling pleased that its not reached my vital organs and in the grip of fear that one day it would.
What I wasn't expecting and what there is (from what I can find) ZERO information about, is what happens when the disease spreads to the skin from the lymph nodes on your neck. Call me ignorant, but I hadn't anticipated this development - probably because there's no information about it. However, ask me what symptoms to expect if its gone to your liver or lungs and I'm well clued up!
What has happened to me I could not have anticipated a few months ago. I now have a 'half collar' of skin disease which is slowly strangling me, disease in my parotid gland which in a cruel twist of fate has disfigured and paralysed the right side of my face, and all sorts of pain associated with having these symptoms.
I now understand what it is to have cancer every day - and I haven't even started on the brain tumour!
I was expressing my exasperation to a 'friend' that there is so little known about it and she (comfortingly) said 'but what could you have done even if you were aware?'. Er.... prepared myself mentally for having a facial disfigurement? maybe been a bit more 'on-top' of my cancer ?(my onc has always been very laid back about the 'small lumps' in my neck). As tho 'small' cancer is much better than 'big' cancer. I always thought 'well, its not gonna kill me there - if he's not worried, I'm not worried - we only need to worry when it goes to my organs'. Ooooh I wanted to shout at her!!!!
Sorry Jane, I don't have any answers, but I just wanted to respond as a fellow IRR as you've given me good advice previsously.
I was diagnosed with regional recurrence (rr) OR secondary breast cancer(sbc) in June 2008, about 18 months after the original breast cancer diagnosed.
When spread was diagnosed last June no-one (in Oncology team) seemed clear whether or not I had sbc or rr. After the Consultant said there was a spread to the lymph nodes in my chest, I was taken off by a Breast Care Nurse to go through further treatment. She went off to get me a booklet on sbc but came back saying the consultant wanted to wait for the results of further tests before he was sure it was sbc !!
No-one ever told me one way or the other for sure but the rr was always referred to as sbc. I think that was because the cancer had spread into the sternum and although the oncs. thought the spread into the sternum came about via the lymph nodes in the chest they could not be sure.
The medics said not to get hung up on the label as both rr and sbc would be treated in the same way. They also made clear that whatever it was, it could not now be cured.
Then, in January this year, diagnosed with spread to rib, hip and spine. So, obviously, can now be termed sbc.
I am also very interested in medical information regarding my condition but feel that the whole sbc situation needs looking at.
For example, I would like to see more information on how sbc spreads. And at what rate. And more of a breakdown of how EACH type of sbc spreads...including what is sometimes termed rr. As we know,
some rr can be ultimately terminal.
And more information about the different TYPES of breast cancer and how they spread ie triple negative, hormonal, BRAC 1 etc. I think the type of cancer is more significant than the recurrence although others may disagree with that.
My oncologist wanted our local hospital to start it's own Breast Cancer website because he thought there were still plenty of myths and misinformation out there in the public domain.
The Way Forward
This, Jane, is the difficult bit. We could individually email those at BreastCancerCare to ask for the extra information. That may add up to quite a few people asking. There are other sites out there which seem to have more comprehensive info. on different types of bc, including cancerbacup which is now merged with macmillan. We could look at those.
As you say I am in this category and didn't even realise it until reading your posts. I was NED for 11 months after end of primary treatments, when some pain under my arm prompted my return and a very quick operation to remove further nodes. A biopsey on them and CT scan and a meeting with the Onc gave me the diagnosis of a local reccurance, but that there was no disease elsewhere. We went home and celebrated the 'good' news, turns out we has wasted a bottle of Bolly.
A started but failed treatment plan of carboplatin happened, but the disease which was already paplable in the neck node the week I started it, allowed it to progress further and it is now present across my lymph glands in chest and neck.
My recent scan gives the following report:
"The superior mediastinal and supraclavicular fossa lymphadenopathy has decreased in size, the maximum diameter in the superior mediastinum now measuring 23mm, previously 35mm (scan 28/11/08)
There is no evidence of hilar, sub carinal or retrocrural lmyphadenopathy"
Conclusion: There has been a partial response to the present chemotherapy.
So the current regime is shrinking the tumours, although NED is very unlikey according to my Onc team who since the scan showing spread on the 28/11 have been crystal clear, that this is now a terminal condition since the spread, and the treatment plan is hold not cure.
I do feel that the myth of curable for regional or local recurrance should be dispelled, it won't always be a good outcome as post the local part, the cancer can already be on it's way to other places. So it is not always so, and you and I are proof Jane, plus there must be others out there.
Anything I can do to support, please let me know.
You've raised a very interesting point Jane. It is actually only through reading your posts that I have come to the realisation that my "secondaries" which were mainly 4 active affected lymph nodes around my upper clavicle sound like they were probably a regional recurrence and yet those words were never mentioned at all. There were also 2 tiny nodules on my lungs but the oncologist seemed more concerned by the upper clavicle area as it seemed so active.I was just told it was secondary breast cancer and knew no different until reading your posts. The onc wasn't even sure if the nodules on my lungs were cancer but now that they have completely gone along with the affected lymph nodes he thinks they probably were but definitely seemed far more concerned about the lymph nodes. I would definitely like more info and to find out if that's what I had( I say had as I'm currently NED but I do know that this is unlikely to continue indefinitely much as I'd hope it would!
Since being diagnosed with incurable regional recurrence 2 years ago I have seethed at the lack of public information provided by any of the breast cancer charities. Indeed a google on the internet doesn't come up with much either. Information in BCC publications stresses that a regional recurrence is not 'secondary' breast cancer, thereby implying perhaps that it is always curable. I have sometimes felt I have invented my own prognosis...though my oncologist, my hospice nurse, my GP have never been in any doubt that the particular unusual 'but not rare' presentation I have is anything other than terminal. Everyone expects the cancer will spread to my major organs but it hasn't yet, but it ain't half caused already a lot of 'regional' damage (loss of voice, damage to eye for example.) and I know only too graphically how the regional presnetation can kill me.
I'm a seeker after information but even so I find myself at times being apologetic, never quite sure if I 'really' belong here. I can read the whole of the BCC secondary breast cancer booklet, and feel excluded. Now I've used up all my standard chemotherapy options the irony of my situation feels even more poignant.
Since my own re diagnoses there have been a few more women on these boards with similar kinds of spread..jantharra (Nikki) for example...I'd like to know how you have found the lack (or am I assuming this?) of information? What can we do? A year ago I e-mailed a few people at BCC about this, got one reply but no suggestions for action. I still feel as strongly as ever that information about unusual presentations of metastatic breast cancer is badly badly needed and want to do some lobbying in the hope of more action than happened a year ago.
I know there are several of us...what do you think?