Thank you reply, I have not been on here for a while and don't have alerts set up so sorry for late reply. Its very interesting to read (like you say) matching situation.
I am glad to hear all your areas are responding well and are being controlled.
But also read with interest your oncologist recommended unnecessary surgery to for example your ovaries. I rightly or wrongly just want then out because for one I hate the side effects from the zoladex, two I want once less drug in my body and three it's one less area to worry.
As for my breast cancer, I'm just struggling with it being still in me from a psychological point of view, plus ironically from a lump that I never felt in the 1st place I now know where it is and feel it quite a bit when lying in bed etc. I also feel although it has reduced slightly in size and may well be now a buddle of scar tissue and obviously cancer cells I just feel it adds to my cancer burdon in my body. I know it has spread and I know the implication of all that it's just me knowing it's just one more area for my body and the drugs to still keep fighting or attacking it.
I hope you have had or will have the same positive results from your CT Scan (never ever a pleasant wait). I also appreciate your reply and hope we all continue to not let it rule our lives, but it's hard to stop that worry I have to say.
I understand you say you try to avoid forums as do I as I find it a bit overwhelming reading them sometimes. But also find some reassurance in them also. If you want to I am happy to have further chats or support with you personally if there is a way of doing so, as not everything you want to post on a forum page. But otherwise thank you again for your comments and words of support. Rach x
I’m new to this site so only just saw your post.
I had to reply as it sounded like I wrote it!
I was diagnosed in January 2018 with secondary breast cancer at the start, her2+ and oestrogen positive. It had spread to parts of my spine and pelvis.
I had 6 rounds of docetaxel, along with herceptin and pertuzamab. I still have the h and p plus monthly demosomab. I take daily Letrazole and calcium tablets and have zolodex every 12 weeks.
The chemo worked very well and almost got rid of the lump in my breast and the nodes. Last ultrasound scan I was told it was hard to see it.
My spine looks good too although I have lost a bit of height, I’m not the tallest to start!!
I don’t get many symptoms apart from menopausal ones. These have really kicked on now after 9-10 months on the Letrazole and zolodex. It’s hard to know what causes what symptoms and what’s to do with the cancer! My consultant said best up avoid unnecessary surgery, regarding ovary removal, but to see how I get on with the injections and tablets.
I have not been offered surgery to remove what’s left, I was told that this would not happen unless I was stable everywhere apart from in my breast.
i was told at my last appointment with him that I was under excellent control, I’m seeing him again Wednesday after my ct last week and hoping it all stays the same.
It’s so encouraging to see all the comments on here from people many years on with sbc. I’ve avoided forums up to now, but feel positive most of the time and I’m hoping to continue living with cancer for many years to come!
Good luck with it all, let me know how you get on.
I have just taken the first tablet tonight but I will keep you posted. Kess is also on it and is about a week ahead so might be able to give you more of an idea.
Will be interested to know how you get on with abemaciclib as my mum who was diagnsed de Novo last month with ILC has been on Letrosole for a month and is due to start the accompanying abemaciclib this Friday. My understanding from her oncologist is that it's kinder to your bone marrow which is why you can take it continually where as the palpaciclib required 21 days on and 7 days off to give your bone marrow a chance to recover.
She's very nervous about the side effects she might experience but keen to give it a go to try and extend the shelf life of Letrosole as some have mentioned.
Will be interested to see how you get on and happy to share her progress with you so we can compare notes as you're the only other person I've encountered so far who's taking abemaciclib - it does indeed appear to be very new. Good luck. I'm sure you'll smash it!
I wouldn't say I've noticed any side effects from the Zolodex yet, don't know if or when to expect it to happen if it's going to? We are in Surrey.
Hi yes I'm 46 as per very original user name 🙄.
Invasive ductal HER2 positive, ER & PR positive.
Will be good to stay in contact which county etc are you from, also have you had any side effects from the Zolodex yet?
mind is Lobular ER and PR+ HER 2 -, what is yours? i 'm 46 which I'm guessing from your username is possibly the same as you? Would definitely like to stay in touch, like you say I think our situations are very similar.
Thankyou for your reply Anniej
I have taken note of the drug you have along side Letrazole to look it up for info Thankyou.
I can sympathise completely with you secondary diagnosis as is such a blow when your still regaling from the breast diagnosis. You also feel very cheated that you don't get the chance to just deal with one massive problem to be then given another more scary one.
It is good to reach out for people on here with similar life's and issues but I too want to meet other woman in a similar situation and don't have a Maggie centre near me (I don't believe) I am near York and would love to find somewhere that has similar meet ups and supports, if any one has any ideas I'd love to know.
I am going to start denosub for my bones but my oncologist did say not right now as asymtomatic but from what I read it's there to help not wait till I need it. As I have just finished my chemo I think he wants me to have a break from that onslaught before I start the next as I do gather you can have some nasty side effects from the denosub such as joint pain etc.
It would be nice to know if everyone gets sides effects as I was once a true believer regarding drugs that there were people out there who read the side effects and belived they had them. But I have to say after been on my treatment and the drugs that go with it, I feel people do seem to get all the side effects to the drugs ie hormone therapy, bone strengthening etc. One of my drugs which was dexamethasone unfortunately put me into drug induced diabeties which I now take medication twice a day for.
Thanks again it was lovely to hear from you.
So glad you came out of appointment feeling more focused and have some direction, it's funny what we become happy to accept once we have a diagnosis. I guess it's called learning to live with it while still trying to come to terms with the diagnosis.
I am like you about to start Zolodex injection, Letrazole and bone strengthening. I suspect we have a different cancer pathology as I'm also staying on targeted therapy hercepcin and pertuzumab. What is your type of breast cancer again and what area do you live or where is your treatment hospital/centre?.
So as to your question about the drugs you are going to start I can't be much help as I too am in the dark. The only thing I will say is I have opted to have my ovaries out to go towards managing my oestrogen levels as I wanted to have one less drug in my body (Zolodex) so I am on a waiting list for that. How old are you littlep as you are obviously pre menopausal?
It would be great to keep in touch if you want to that is as I feel we are at a very similar place with how our cancer was diagnosed and a the treatment route we will kind of be on.
Best of luck to you and here to few side effects.
I had a really positive meeting on Friday with the Oncologist, he apologised that everything had taken so long and that I'd been left "staring down the barrel of the gun", he sent me immediately for a Zolodex injection, gave me letrizole tablets and is applying for funding on abemaciclib which he said has only very recently been licenced by the NHS, I will also have bone strengthening drugs as well. He said if you're going to have Metastatic Breast Cancer, March 2019 is a good time to have it as new treatments are coming out all the time and there's many more in the pipeline.
I know there's still a tough road ahead but I now feel like I have hope of a future which at the end of the day is all anyone has.
Bracing myself for any side effects now, any advice on the drugs would be helpful....
Hi Rachel, I'm so pleased you reached out to this group. I've learnt a lot myself. My story is not the same as yours, but perhaps it may help? My lung mets were discovered two years ago, after my second ct scan, and when I was almost finished my radiotherapy. It was a great blow as I thought I was doing really well, having gone through my op, chemo and 25 rads. I am ER+, HR-, and was put on the aromatise inhibitor Letrozole to discourage the reoccurrance of the primary. In addition, I was prescribed Palbociclib which I was told works in tandem with the Letrizole, both to inhibit growth of secondaries but also to extend the shelf life of Letrizole, so to speak. I believe on average Letrizole works for about 22 months before the little blighters figure out how to get around it, but the addition of something like Palbo can extend it to 5 years. Great news for us. I am regularly scanned to check that the mets have not spread to bones or liver, which would be quite normal for someone like me. I understand that I would possibly be given Denosub for bone mets ( unless something better comes along), and also calcium to help to strengthen the bones. The cancer would cause holes in the bones which would be extremely painful and also make the bones very fragile. I am in Newcastle, which is a centre of excellence for cancer, and my treatment is fantastic. I am very much part of a team helping me to live with, not die from, cancer. I am assured that there are plenty of treatment options currently available, with others currently being researched. I regularly meet women like myself at Maggies Place, where I am able to reach out for help and support. Some of those have been living with secondaries for a great number of years, and I am determined to follow their example! Passing on their grit and determination to you, too. Lots of warm wishes for successful treatment(s) and a long life. X
When I was waiting for the scan results I got lots of back ache! When they told me where it was they explained there was not enough to cause any symptoms. Once they told me that the back ache went away! The mind plays tricks and is very powerful indeed. I imagine your back pain is caused by picking up small children. You will feel better when you have a treatment plan. It’s not easy but it’s doable. Essentially it has to be done. The advice not to cancer to take more from you than it has to is good x
I am meeting the Oncologist on Friday and should get a treatment plan then, will let you know what he says. As for the secondaries, I wouldn't have known they were there! While I was waiting for the PET scan results I had convinced myself that every other ache and pain was mets but was gobsmacked when he said it was in my Spine and Sacrum, I have a slightly tight power back but I have young children so figured that's all it was. Do you get symptoms from yours?
I was diadnosed de nova exactly a year ago. I have mets in my spine. I was put on Palcibiblib (Ibrance) and Anastrozole. I also have Zometa once a month. I was a mess at first (and still have my moments) but am working full time and feel okay. My hair is thinning but otherwise so far so good. The mets in the bones have shrunk and so has the mass in my breast and the lymph nodes. The oncologists keep mentioning surgery to remove what's left of the lump but they haven't made a decision. There's no doubt that it's hard but I certainly wouldn't call my life joyless. I can't give advice as we are all so different but when I was first diagnosed I found the posts by others who were coping really helpful. Best wishes Anne
I wonder if it is an age thing re ovaries as in theory I'm closer to natural menopause than you, but I have no idea to be honest all this is a great big learning curve we don't want.
I am interested that you went onto hormal treatment letrozole as another person who responded to me mentioned I should be put on a hormonal drug after chemo.
I am in 2 minds over surgery for my lump and wish there was more concrete research as to the pros and cons, but agree that physiologically it plays on your mind being there and I wish I could say it wasn't, although like you mine has shrunk but not disappeared.
I think a lot of my anxiety over "what now" is due to being my last chemo last week and its been so full on I'm like "no! Keep going don't stop" as I fear stop is regression when I obviously have to try to come to terms more with living with this and constant continuous treatments (hopefully) It's all about adjusting without a rule book or guidebook of right and wrong.
Where abouts do you live? I'm up near York and want to try and seek out support as think this may help, but this forum is a great help for me and others too.
Take care and Thankyou Beth
It's so good to hear from someone else in the same situation, where so much hope is given to breast cancer treatments and dare I say cures, but then when told you also have secondaries your options are greatly reduced. Well I still want to fight (and I hate using that term) but want everyone around me to be fighting too.
How are you managing with you spine secondaries and if you don't mind me asking what treatment /management plan are you on?.
Good to hear from you and my best wishes go to you.
Sorry for delay in reply but your 11 yrs knowledge of living with sbc has been a great source of information for me thank you so much. I have read a re read your advice and understand that I may have to live with my breast lump for a bit longer and see if indeed it does stablize hopefully and then could be reconsidered down the line all being well.
You asked my age I am 46 and pre menopausal so yes have currently been put into menopause but I will defo be pushing for ovary removal as zolodex monthly is not my overall long term choice. But you did interest me in your advice and suggestion of a hormone tablet along side my targeted H + P, this has not been suggested to me yet and I wonder why but I will be asking my oncologist, I guess I just thought the hormonal elliment of treatment once finishing chemo was the zolodex, but I appreciate our bodies do excreat oestrogen elsewhere. Did you have this hormone treatment once your chemo had finished?
Iv been told I may start denosab for my bones at some point but not yet as symptom free, which again I am unclear about as my secondaries are in my menubrium (top of sternum) right iliac blade and right humerus. I thought the point of that drug was to strengthen my bones to try to prevent or discourage any further cancer cells taking up base there so should automatically be on it. But then again is it side effects vs quality of life.
You have been a great support and a positive inspiration for me that you are 11 yrs down the line, you must be made of strong stuff, as all us women are faced with this terrible disease.
I was diagnosed with both primary and secondary at the same time too (multiple liver secondaries).
As I am only 31 I'm on Zolodex too. I have managed this for just under a year but havent been given the choice as to whether to take my ovaries out or not. As long as im in the hospital monthly I dont mind getting the injection, from what I gather this is a matter of preference but do keep meaning to as my onc if one is better than the other.
In terms of the breast lump, I had a good response to chemo (EC) bringing my tumour down from 5.5cms to 1.5cms and throughout chemo we were not sure about surgery but at the end of it I went ont to Letrozole hormone treatment and my onc said that he would refer me for surgery (his choice). He advised there was no evidence that this can help with the secondaries but my surgeon said it has been known to help the secondaries by removing the primary (again with no strong evidence). It was ultimately my choice and I felt better in myself to have the lump removed so I had a partial masectomy with no reconstruction in Oct followed by radiotherapy in Dec. I was offered a reconstruction but my skin wasnt quite right for the one they wanted to do however my surgeon did say that there is always the possibility of recon in the future.
If you feel strongly about removing the lump I would push for it, im glad my team offered it and I certainly dont regret having it even if i am a bit lop sided!!
Hope that helps a bit.
I am in the same situation as you, I have just gone straight in with a secondary diagnosis as it has spread to my spine. The surgeon said they would not perform the Mastectomy because it was more important to focus on systemic treatment s, I quieried wether it could happen further down the line and he vaguely answered that perhaps it could be revisited if the bone mets were controlled but I felt he was trying to say what I wanted to hear as he didn't linger on the subject.
It does upset me that I still have the primary tumours but is encouraging to hear that they can at least be shrunk.
Hi, me again.
Just realised that you said you were having zoladex as well. I had that after my primary but did want my ovaries removed. For various reasons I didn’t have them removed but when I finished my 2 years on zoladex my periods did come back and I’m sure that huge increase in hormones in my body had something to do with developing secondaries. I have since had my ovaries ablated. It is possible that having had docetaxel your ovaries may be redundant now anyway, in terms of fertility, but you won’t know this and I’m not sure if you’ve mentioned your age. I think it will be down to you what you want to do - have monthly (or maybe it’s now 3 monthly) injections or a fairly minor operation to remove your ovaries. Again, if you’re not on a hormone treatment alongside zoladex, I would ask to be put on one, oestrogen is still produced by the body through other means than the ovaries.
I saw your post the other week but wasn’t able to reply at the time and also as I hadn’t been diagnosed with secondaries at the same time as my primary I didn’t think I could help.
Having re read your post there are a few things I’ve learnt during my 11 years on here (and living with SBC) that may be relevant.
Not many ladies present with secondaries at the same time as primary which is probably why you’ve not had many replies. Some of us probably do have SBC at the same time as primary but until we have a scan we, and our oncologists, don’t know. I suspect if we were all scanned, which isn’t usual protocol, more of us would be diagnosed with both at the time.
Once SBC is diagnosed the aim is to control the disease systemically, ie with chemo/hormones etc. Often surgery isn’t offered when an original primary is found. My mets were found when a local recurrence in my breast was seen on a routine mammogram. It wasn’t removed because the urgency was to get on with treatment. This would have been delayed if surgery was done as your body has to recover from surgery especially your immune system if you are to have chemo. I asked again a few years later as I wanted it removed but was told it was no longer visible on CT scans and had in fact gone. It has stayed this way ever since. Sometimes surgery is offered but a period of stability is usually the criteria.
As to what chemo you would go onto next it would probably be Kadcyla as this is the next step if you are HER2+ Some, most, of the chemos mentioned on here are for hormone positive, HER2- SBC although some, such as Capecitabine can be used for both. The H and P you are on will hopefully work for many years although being hormone positive I would suggest you ask your oncologist about also having a hormone treatment (usually a tablet) alongside them. Plus of course a bone strengthener.
I hope this helps. As many of us have found out there is no definite path of treatment that we all follow, different oncologists may choose a different order of treatment although all of them are generally available for them to use.
Thank you London that is helpful but I guess still a lot of unanswered questions re research as to what is the best option. You have been on so many different drugs to try and manage this disease it is frightening. I guess this is a further conversation with my oncologist. I will keep looking into articles and see what I can find. Take care x
Hi no I didn't say where met was it started in my menubrium (top of sternum). But also now have spread to right iliac blade and top of right shoulder joint. Although the last two are minimal.
Thank you for your reply and so sorry your original diagnosis was not what it seemed, cancer is so hidden isn't it.
Hello, I was diagnosed lobular grade 2 cancer with secondaries in liver and a rib very soon after the primary diagnosis just over 5 years ago. ER7 HER2 positive.
I then had EC chemo which put me into menopause ( I was 53 at the time) I had a few zometa injections then was changed to denosumab (which I’m still on, and the tiny area of bone mets in my ribs has remained stable always). Then I had tamoxifen, on this I brought up the subject of mastectomy! My onc agreed for me to see a surgeon who proceeded to refuse to do it, on the grounds that it would not cure me. But a scan then showed minor progression anyway so I had docetaxol chemo. After that I had letrozole. While on letrozole with scans showing shrinkage or stable I found an article that indicated that removing the primary can help even if it has already spread! (It was from America but can’t find it now as it was on my old phone sorry!) I asked my onc to refer me to a different surgeon and she did. He agreed to surgery as long as there was no reconstruction involved so as to keep the site clear. I agreed to that! So it was done! They didn’t give me radiotherapy too as it was deemed not needed as the secondaries were already known about. About 8 months later (21 months in all on letrozole) there was more progression so I changed to Capecitabine. I was 20 months on that before progression. Now I am on Eribulin, and have currently just finished cycle 4. A recent scan shows stable. Liver function tests all show my poor liver is still working completely normally!
The scar is a constant reminder of illness but I’m glad it along with the primary lump is no longer there! I mostly feel fine, still quite active and get on with as much of what I enjoy as much as is possible. Hope this helps. Good luck.
Welcome to the forum. My case slightly different to yours. In August 2009 diagnoised with breast cancer had mastectomy in the September but before starting treatment they give me a bone scan and CT scan that is when I was told it had already spread to bones. Had the 6 chemo then Rads. Put on Letrozole as I was past the menopause I am ER positive. I am sure someone be along who is in the same situation as you.
You never mentioned where it has spread to. Hope treatment is going OK.
Hi second post of the day (on chemo steroids! )
I asked this question on the private secondary forum but had limited response so out to the larger audiance.
I was diagnosed Nov 2018 with secondary breast cancer from the off set or as I understand through trolling the Internet De Nova presentation of the breast cancer.
I just completed my last and 6th cycle of docotaxel yesterday and will continue on targeted therapy herceptin and prejeta for as long as my heart will stay strong or as long as my cancer is kept at bay. I am her2 positive and er and pr positive grade 2 but stage 4, so will be kept in permenant menopause so have to decide on zolodex monthly or have my ovaries out. Any advise to that choice would be good.
But my question is they are leaving my breast lump in place as feel it's it detrimental to remove it if targeted treatment shrinking it. Is there any one in a similar situation and also with subsequent concern about this. I know ladies have had their lump removed then went on to some time later to develop secondaries and that is a sad but different situation. I am reaching out to those women who presented out there like me with secondary disease fron the onset.
Advice much appreciated as also is the choice of chemo or treatment offered from here on in.