Worried about lack of treatment plan for stage 4/her2 pos/er+

Hello Everyone! I just wonder if anyone can offer me any advice? I have been devastated by my diagnosis but I think my concern has been exacerbated by my consultant’s attitiude. I was diagnosed with a pathological fracture of my left femur. I have had a rod and pins, in this and will be starting radiotherapy next week. However, when I got the actual results of my biopsies the consultant (who is heavily pregant and seemed exhuasted) didn’t offer one piece of positive advice. At this stage the BC is in my hip and breast and nowhere else. Literally everything she said was negative. She didn’t appear to have a plan for me other than to have radiotherapy and to keep me on the tamoxifen I have started. She didn’t want to overload the system and wanted to ‘save’ herceptin as it only works for 12 to 14 months!. I then started to cry and said I can’t believe that you don’t think I should at least have herceptin being her2 positive. At this she relented and said you can have it then! I don’t know what made me more worried her relenting or not even being bothered to put up an argument. I realise from reading extensively that this is could be the protocol for stage 4 BC. I was just hoping for some more active treatment. I don’t even know if herceptin alone will be sufficient. Another helpful comment she made when I asked how long people have been coming to the secondary breast clinic she replied “we do have someone who has been coming 8 years but she is her2neg!”
I have asked for a second opinion which the consultant agreed to via a discussion with my GP. Then, when I ring up a week later the secretary has no record of this and said this must have been a verbal agreement and the letter hasn’t been started. I just feel like I have been given up on!
Could anyone suggest if I could request more active treatment perhaps surgery, radiotherapy/chemo to get to NED. I don’t even know if she thinks this will be possible for me.
Any advice greatfully received!

Hi PumkinSue

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Hi Pumpkinsue,
I am not in the same situation as you, as I am only just at the stage of having a lump removed this week, but I do hope you manage to get a second opinion. The only other thing that might be worth questioning, is who is going to be dealing with you when your consultant goes off for maternity leave? Maybe you could ask to see them earlier so that you can have some continuity of treatment?
Hope you get something sorted out.

Hello Pumpkinsue

Sorry to hear you’ve had such a bad experience at the start. There are 2 threads you might find interesting - 1. in sencondaries:treatments about not having surgery, 2. in newly diagnosed about being diagnosed with secondaries & primary at the same time, started by me. A number of other members share their stories there.

From my experience (read my profile), it’s not unusual not to have surgery with secondaries. I would have thought the debate would be whether chemo can play a useful role in your situation. I’ve heard from my onc he has some other patients with secondaries on herceptin only, with all tumours shinking slowly over time.

Suggest looking in the secondaries:meet ups section, to hook up with others in your area. At the moment, regardless of whether your onc is offering good advice or not, you need to feel better about it, so keep pushing on the 2nd opinion!

Good luck, Sarah

Hi pumpkin sue, I’m not her2+ but I was diagnosed with both bc and bone mets when my hip spontaneously fractured. I had a hip replacement, which was, is still, problem free followed by a few sessions of rads to finish off any stray cancer cells around the replacement. I was then started on Tamoxifen, it worked well and since then (I was diagnosed with bc and bone mets ten years ago) I have had many years of stability and at times very little cancer activity. Hormonals were used before I had any chemo and I still have a good quality of life. I have never asked my Onc how long he thinks I will live but I was told from the beginning my cancer is not curable but it is ‘very treatable’. ‘Very treatable’ helped me, so much, when I still adjusting to the shock of diagnosis. There is one particular thread in one of the Secondaries forums here which has been started by a forum member blondie, who has been an herceptin patient for ten years. Another lady here has been on herceptin for many, many years and I’m quite sure there are others. I will bump up the herceptin thread for you, it has ten years in the title. I hope you get some answers to your treatment concerns very soon. Take care, it took me a while to get over the shock of diagnosis but one morning cancer wasn’t my first thought on waking and many of us are able to move forward and at times live well with secondaries. Best Wishes.

Thank you so much for your reply. I spent over an hour with my consultant on Monday. I feel a bit better now. She was more positive and the plan we have drawn up seems ok. Your experiences have given me hope. Just a shame I am her2pos or have it all! I know of another lady who had the same thing happen to her femur over 3 years ago now. Thank you again for your reply.

Dear Sarah,
thank you so much for your reply. I feel much better now. I spent over an hour with the consultant on Monday. She seemed much more positive. We have decided to go for taxol and herceptin and then after this I may have surgery if it is still necessary. This has made me feel better if it is possible. I notice that you may be having a WLE and you have spread like myself. Did your consultant explain why he was considering this?. I have read about tumour load etc. I should also add that my second opinion has now been sent as well. It is the beginning of a very very long journey isn’t it? Not one you would wish on anyone really.
Many thanks again

Dear AnnaCornwall,
thank you so much for your reply to my original post. You made an excellent point about continuity of care which was addressed when I met with the consultant for over an hour on Monday. We sorted out lots of things and importantly she seemed more positive. I wish you all the best in your treatment. Thanks again.

Hi pumpkinsue, i also like urself, was dx with bc and bone mets all in a few weeks of each other, just couldn’t take it in, my oncologoist was also under the opinion that it is not curable but very treatable, and started me on tamaxifen and bone strenghtners tablets, i am also HER2 positive and ER positive so they thought this was best so i thought there word…i then went home done abit of research of my own and rang and ask why not give me chemo and herceptin when the cancer is still small in bone biggest 8mm and smallest 2mm, they said they would leave it for future down the line e.g. when it spreads MORE…after speaking to a few friends that were doctors that practice outside the UK, they were under the opinion it is very protocol and also to do with budget!!! I was then put in touch with a oncologist who works in Ireland but has trained and worked in the Cancer Cancer in Houston Texas, i reluncantly went to see him very nervous what he had to said and it turned out that , he could not believe all i was being treated with was tamaxifen and bone strenghtners, he said should certainly be on herceptin, chemo and injections to stop my ovaries as i am 37 years of age…he was very much that there was a 15-20% cure or very very long term remission as u can imagine this came as a bit shock…He wrote to my oncologist and told her this and i also spoke to her as it was very long to travel for him to treat him, my oncologist agreed to the treatment but not very eagerly but never the less did…so i have now started on different treatment plan and i hope with the grace of god and medicine, i will get good results, unfortunately the NHS seem to have a budget to stick and treatment plan might not always be the best one at that time…if you are not happy do go for that second opinion…It is very tough and very hard to stay positive as i have 3 young children and am so scared but this is why i am going down the chemo road now instead of waiting. There is so many positive and stable woman on here it gives u great inspiration…xx

Dear Lynn,
thank you for your reply. I am in complete agreement with you that we ought to do all we can to stop it before it has spread further. To begin with I feel that they wanted to just wait for it to spread and then attempt to contain it. I have had a very interesting conversation with an ex-colleage who was diagnosed in 2010. She was originally diagnosed as a stage 3 but as they were planning her treatment they discovered that like myself, her, her2pos er/pr+ bc, had spread to her femur. She said that her GP decided to keep this quiet! She then had her WLE, chemo and rads and while having chemo had a rod and pins put in her femur. She then had a year of herceptin. Three years later she just has 3/6 monthly check ups. When she told me this, I straight away felt that I wanted to go down her route especially as it only in my hip at the moment. I did feel that they were prepared to just leave the BC and felt that they should treat it more aggressively. Things did improve when I met the consultant on Monday. Now I am having taxol and herceptin for 6 rounds and then if it is necessary and I want it they will 'do 'surgery. I was surprised by this turn around. Hopefully they aren’t just saying this to keep me quiet! They have referred me to the Royal Marsden and even said that if they suggest anything else they carry it out. Like you I find this all so terrifying. Like me you have probably never been ill in your life. I fear for my 2 children who I love sooo much and the hubby of course.
I wish you all the very best! As our paths are similar perhaps we could link up somehow. Just getting the hang of the forums and replies etc
Many thanks

Pumkinsue, I’m very sorry you have had to join us, and that your doctor was so conservative in their original treatment plan.
Unfortunately the treatment of secondary cancer on the whole is lacking in the UK (although there are exceptions), and a recent large scale study showed that treatment in the UK is much less aggressive than other developed countries (see link to article in the British Medical Journal below).
LynD has outlined the difference of approach between her original Oncologist and that of an Irish Oncologist who had worked in the US (LynD I think your Irish Onc probably worked at the Anderson Cancer Centre, which is part of the Univerity of Texas). The Anderson Cancer Centre have been collecting data on treatment and outcomes for about the last twenty years. They have concluded that there are a unique subset of patients with secondary breast cancer (probably only 1-3%), who, with aggressive treatment, are potentially curable. These people are described as oligometastatic ( those are defines as having fewer than five metastases all in the same place and be within bones not organs). By aggressive treatment they mean removal of the primary (mastectomy), lymph node clearance, radiotherapy, chemotherapy, endocrine therapy, Herceptin etc. The Anderon Cancer Centre also suggest that with aggressive treatment they have an overall survival rate (which applies to all BC patients - not just those deemed oligometastatic), of around 20% over five years, and around 15% over ten years (which makes survival rates at the Anderson, the best in America).

By contrast most people diagnosed with secondary BC in the UK are treated palliatively, not curatively. In general doctors in the UK say that while BC is not curable it is treatable (and this means that length and quality of life carry an equal weight). As a result most patients who are diagnosed with secondary BC at the outset are not offered a mastectomy/lymph node clearance, because this is seen as putting a patient through surgery unecessarily. Similarly, most patients (if their cancer is oestrogen receptive), tend to receive endocrine therapy and bone strengtheners such as Bondronate or Zometa (or Herceptin if their cancer is Her2 positive). Radiotherapy tends to be used to relieve pain, and chemotherapy is used when endocrine therapy fails. If chemo is offered at the outset, it is usually to get a fast growing cancer under control.

Unfortunately it’s difficult to say if the Anderson’s curative approach is better than the palliative approach (although the study that I mentioned above seems to suggest that an aggressive approach equals longer survival). Because while Anderson have data to support survival rates, the UK does not (as there has never been any requirement for doctors to collect data on patients with secondary BC). The survival rates listed on the Cancer Research website are based on a sample taken in the midlands, quite a while ago, and nobody knows if this sample was representative. Also since this sample was taken, there have been quite a few medical advances.

Essentially therefore patients have to make up their own mind about the treatment approach they feel would benefit them most and then if necessary push for it or shop around (and unfortunatley this means doing research to support preference, or find out where the treatment is offered). For example there is much evidence now that removal of the primary cancer aids survival, but if an Oncologist is of the conservative variety they may not be willing to offer a mastectomy, so a patient will have to push very hard (preferably by putting their request in writing), or go elsewhere.
Fortunately for me, the Professor of Oncology who manages my treatment at Charing Cross Hospital ( who incidentally also did his early training in the US), favours a more aggressive/proactive approach so I have less of a battle (also incidentally, he says the evidence that mastectomy/lymph node clearance extends survival is almost overwhelming). However, my original Oncologist at my local hosital was so conservative that he offered virtually no treatment plan whatsoever. His prognosis was that I would have 18 -24 months, but thanks to Charing Cross Hospital, I have been on the go for three and a half years, and with luck will be around for a few years yet.

So to summarise, the treatment approach in the UK does tend to be conservative, and patients have to do their research to look at the options, and work out what they think would give them the best chance of survival. Then, if the doctor managing their treatment is unwilling to facillitate the treatment desired, the patient has to push (with evidence), or go elsewhere.
Hopefully I have given you some food for thought, and given you some ideas for moving forward.

Hello Sue,

I understand it’s unusual to be offered a WLE as I have, with secondaries. My onc and surgeon have been very transparent about the lack of research or evidence to suggest any physiological benefit but said there’s an emerging band of thinking in Europe that there might be a benefit in some specific cases. For me, I had extraordinary response to the chemo - my multiple secondaries virtually disappeared from the CT scan.
Meanwhile, we’re progressing on the basis of the logic that it’s better to reduce the bulk of the bc tumour and may have psychological benefits.


Lemongrove, that made fascinating reading, thanks. Sararh

Sarah I quite agree about the phycological effect of having the tumour removed.I had an axillary mass(all the lymph nodes had matted together to form a large lump) and chemo,rads and hormone therapy only reduced it by half.After 3 years I was so depressed that I got a referal to a surgeon who was happy to remove it.She said she could not see any reason not do do despite the bone secs and she thought it would also prevent spread to other areas.Sadly I have recently had spread to my liver but I still so pleased I had the lump removed, it’s presence reminded me constantly that I had bc.

L xx

Hi pumpkinsue,

I am HER2 and ER positive. I have secondaries in my bones, 2 in spine, one in my hip. I was diagnosed with primary BC in September 2008, in November 2008, I was told I had secondaries. I was 42 at the time. I had an aggressive treatment regime, chemotherapy with herceptin and bone phos, followed by mastectomy with node clearance, followed by radiotherapy to my chest wall. I started tamoxifen after I finished chemotherapy.
I have remained on tamoxifen and herceptin for nearly five years. I don’t have any pain or other symptoms and continue to work full time.
There are now a number of other drugs available to treat HER2, namely, Lapatinib, Perzumabab, and recenly trialled drug called TDM1.
Due to developments in drug treatment women who have HER2 BC now have a lot more options available to them.
I echo what others have said, you need to get second opinion.


AlexD, I’m interested to know if you had a mastectomy in the period between discovery of your primary and secondaries, or did you have it after your secondary diagnosis?

I think as Alex, and LynD show, there are doctors who offer a more aggressive treatment option, so even if your doctors approach is pretty standard, don’t think their approach is the only one available - just go elsewhere. You can always pm people who have had a more aggressive treatment regime and ask who manages their treatment (most people on here are glad to help each other).

I too have had very aggressive treatment, and as Alex say’s there is still much more available. I was diagnosed in Nov 2009 with what at the time was thought to be stage3 BC (ER+). I had a mastectomy and lymph node clearance in Jan 2010, and this revealed most of the nodes removed were infected. This prompted scans which led to the discovery that I had bone mets (three in the skull). At this point my then Oncologist became very negative, basically just offered endocrine therapy and bisphosphonates, and told me I probably had 18 -24 months to live.
Needless to say, I went elsewhere, where I was told that with only three mets, there was a slim chance of cure, and even if this wasn’t possible, I would still have at least five years. I had chemo, conventional RT to the MX site and neck, followed by Cyberknife stereotacic RT at a curative doe to the skull (I was the first in the UK to have it for bone mets), followed by endocrine therapy and bisphosphonates (Bondronat). Everything seemed wonderful and scans suggested there was no evidnece of disease (NED). However in November 2011 I had severe neck pain and it was discovered I had spread to the spine (obviously the seeds were already sown in my spine prior to treatment). My endocrine therapy was then changed from Letrozole to Exemestane, and then Fuvestrant. Neither of these worked and there was more progression. My Oncologist then went against NICE guidance and performed a biopsy of an infected node in my chest, and this revealed my cancer had changed from being oestrogen receptive, to Her2 receptive. I was then put on Herceptin and an oral chemo called Capecitabine. At Christmas 2012 I was taken into hospital with an infected seroma (the seroma had existed since my MX), and during my stay it was discovered I have five very small brain mets. My Oncologist then applied for, and got funding for a drug called Lapatanib (which also treats Her2 cancers, but works in a different way, and importantly can cross the blood brain barrier), and I continued with Capecitabine. Normally most people with brain mets are offered Whole Brain RT (WBRT), but because no other mets have popped up since Christmas, my Oncologist has referred me for more Cyberknife stereotactic RT (as this avoids healthy tissue, and can be used at a much higher dose ). If these brain mets pop up again, I will probably have more stereotactic RT (although if they were numerous I would have to have WBRT).
If I can get the brain mets sorted out, there are still more option (as Alex points out). There is a new generation Herceptin, called Kadcyla in America (where it is already licensed for use), and by it’s trial name TDM1 in the UK. The advantage of Kadcyla over normal Herceptin is that it uses Herceptin as a vehicle to carry a powerful chemotherapy directly to the cancer. By working from within the cancer cell, it overcomes the problem of some Her2 cancer cells coating themselves with a substance which prevents Herceptin reaching receptors on the surface of the cell. It also reduces the side effects of chemo, because only cancer cells receive the treatment.

So as Alex and LynD say there are plenty of options out there, you just have to make sure you get them.

Hi Pumpkinsue, I echo what the other ladies have said and am sorry your oncologist was so unhelpful to you. When I went to see my Oncologist I tried to write a list of everything I needed to ask and armed myself with some examples of treatments ladies on here have had and If I am suitable for any of them. I never even heard of Cyberknife until I signed up on here! I hope you get all the treatment you can to help and The Royal Marsden is possibly one of the best places you can get it. I get a treatment plan today so I’m in for a long chat with my Onc at the Hospital and am nervous but determined.

Hi lemongrove,

I had my mastectomy after I had my secondary diagnosis. I asked the surgeon if he would do it and he said yes as there was evidence to indicate that it would improve my outcome. I am treated at Cheltenham hospital. The plan is to start giving me subcutinous herceptin when it becomes available later this year as my veins are bit shot with all the treatment. I was given a choice of a port or the injection so I went for the injection as it is much quicker and less fuss.
Alex D

Alex it sounds like your medical team are on the ball. I had my mastectomy a few weeks before being diagnosed with secondaries, but when I changed Hospitals, the Professor of Oncology who took over managing my treatment later commented that there is now overwhelming evidence removal of the primary aids survival. If that’s the case, I find it shocking that the majority of people diagnosed with secondary cancer are denied this, or told that it’s not worthwhile.
The results of a widescale study were published in the British Medical Journal recently, and this study showed that secondary cancer is treated much less aggressively in the UK than other developed countries, and this could account for it’s relatively low survival rates. See link below:

Lemongrove…just a note of caution when interpreting papers…the paper you quote has my consultant as one of the lead authors…which doesn’t make my interpretation any more valid!..but its a statistical paper which looks at survival in different countries and stage of presentation. One of the conclusions amoung others is that Uk women present at the same stage of disease as other countries ie disease is not more advanced here. Another conclusion is that patients who present with stage3/4 have worse survival in the UK. they raise the possibility that this is due to fewer women at this stage of disease receiving best treatment for their circumstances and that this needs further investigation…Many of us may believe that this is due to the variation in treatments in different places and the limits on access to expensive radiological and chemotherapeutic treatments…but the paper does not show this.