I was diagnosed with primary BC in Sept last year and secondry to my liver in Novemember. I have just finished chemo and am wiating for scans and results to see how successful chemo’s been. I was put straight to chemo so no surgery yet. My onc suggested that I might not have surgery to maintain overall quality of my life as to have surgey now my secondries have been diagnosed will likely be a psycological rather than medical/physical benefit and will be unlikely to change the overall outsome of my illness.
Thing is, I just can’t get my head around surgery not offering some long term benefit as I know the cancer is still in there - still got palpable lump. Suppose need to see how well liver has responded/
What experiences and views do others have? I would really appreciate to hear them.
Best Wishes, Lea
PS. I haven’t been on here for ages so hi to any that may remember me x
Hi Lea, sorry you have to join us but welcome and I am sure others will be along soon to offer help and advice.
My sec to liver and bones were diagnosed in 2004 primary 1999 lumpectomy and rad therapy. No chemo which has always concerned me, in those days I did not ask questions, now I ask too many.
I suppose the thinking is the chemo will shrink the cancer where ever it is. I always make notes with the date on so if I need to refer back the info is there. Onc is now used to this and uses it more than my medical notes.
I do remember your name from the other threads I am so sorry that you have spread to your liver and I can relate to how I felt when I was told I was really scared, mind spinning all over the place. I t will be 5 years in May and I am still here, have had a good 4 1/2 years so far and hope to have many more. So please don’t think this is it there are lots of treatments they can give us.
Sorry this is a short quick post but was just going to log out but did not want to ignore your post.
Take care.
Love Debsxxx
I don’t know if you have posted here before, but would like to say ‘Hi’ anyway.
It is unusual to have surgery (unless for a life-threatening reason) once you have been diagnosed with secondary breast cancer. The reason for this is that usually surgery is performed on a primary cancer in order to remove the cancer from a contained site (your breast). Once the cancer has spread beyond that place, the cancer cells are circulating in your blood stream and there is no point in doing the surgery as the cancer can spring up anywhere else (your liver for example). There are certain areas of research which suggest that performing surgery at this point may actually impair your life expectancy and quality of life. There is certainly no evidence to confirm that surgery on secondary patients extends life so I think your onc is right in what he/she is saying. I know it is very difficult to understand this - I have spent many sleepless nights mulling it over.
Just for the record, my liver mets were diagnosed over 3 1/2 years back (same time as primary diagnosis), I had no surgery, have been on treatment constantly since then, but have always been pretty much normal (well, I guess that is a matter of opinion) since then.
What chemo have you had? Do let us know how you are getting on. Good Luck with the scan results, the waiting is just awful…
Sorry cant really help as dont have secondaries but seen that no-one yet posted. Im sure you will get some responses soon from people who know a lot more than me.
I dont know how bad your secondaries are but Im with you a bit, I think Id rather go through the op if things are positive, because its knowing its still there.
Debs, I too would be questioning no chemo back in 1999 but I suppose back then treatment wasn’t as it is now. No good to you 5 years down the line though in 2004. I knew when they gave me chemo prior it was due to the risk assessment that they gave me indicating a higher chance of spread. I did post a few times a while back - I think I have been hiding since…Its really good to hear from you and read of others who really are able to get on dispite the situations they are in. I do find it helpful to be part of this community even if none of us really want to be here if you know what I mean!
Jenny, i feel you must have been/are in a similar position to me? Have you researched it much? Like Lisa sugests, I have been thinking to have the op as i know that the option is there but I don’t want to put myself through unnecessary etc. When I was very first dx I had hope that in a few months I would be coming through the otherside but since my secondry dx I’m struggling really to back down and accept what a secondry diagnosis means. It makes me so sad. Like many ladies on here I have two children and I have to be around for them, I have to be. They are only 3 and 1 years (just).
My onc explained it pretty much as you have done and I know the op would be like shutting the stable door after the horse has bolted but I think what if my chemo was really successful and everywhere is NED except my breast? Dreamer eh? I know i have to wait for the scan results before I can make any decisions; I hate waiting for those results. I’ve had 4 x EC chemo and should have had 4 x taxotere but I had an alergic reaction twice so it was changed to taxol which was fine.
Lisa, thanks for your posts. My secondries are contained to my liver (4 x small tumours) and responded well to the first type of chemo (only 1 left) but don’t know how well since it changed to the 2nd type.
Welcome back to the forums, I’m glad to see you’re getting some good support from other users of the site. I have put for you below links to literature regarding a secondary diagnosis that may help you. The only one you can’t download directly is the Secondary Resource Pack which can be posted out to you free of charge. I hope these are helpful to you.
If you feel you need to talk to someone in confidence then please do phone the helpline where the staff will be only to happy to talk to you about your diagnosis.
Hi Lea…I’m so sorry you have to join us.
Like Jenny I’ve had no surgery, I was diagnosed with both bc and bone mets in 2003. My primary tumour is now a useful indication as to how my treatment’s going. I had 2 and a half years of no active cancer whilst on Arimidex but the primary was still there…although doing nothing. Half of it is thought to be just scar tissue now. Now I’m on chemo I’d be reluctant to have any surgery as I’m guessing I’d have to have a break in treatment in case of the risk of infection? Just guessing on that one.
Good Luck with your scans…the waiting is too awful…but I hope you get some great results…Take Care…Belinda…x.x.
We do sound a little similar. My first chemo was 6 x EC chemo and after hormonals didn’t work, I was on weekly taxol for about 6 months. I had two very good years on xeloda, which is an oral chemo - maybe this will be an option for you next.
I read somewhere that surgery for stage IV may actually increase the numbers of circulating cells thereby making the situation worse. I don’t know if I’ve got this right or whether there is very much clinical research to back this claim. I know many women would like to have surgery on a kind of psychological level.
If you have one remaining tumour, have you looked into RFA (radiofrequency ablation) where they zap small or lone tumours? Perhaps it may be worth discussing with your onc as a way forward?
My children were 4 & 5 when I was diagnosed - so I understand how awful you are feeling. My son will be 9 in a week or two and I am just so chuffed to have grown him this far!
I just want to say sorry you have had to join us on this thread, its not easy but there is alot of support here and alot of information. I am glad your liver is responding well to the EC chemo - that sounds really promising.
I can’t really offer any insight into the surgery /no surgery question except to say its pretty well established in this country that you don’t have surgery after a secondary diagnosis. (and that gos for other things as well - I had recent discussions about my thyroid and it was agreed no way would there be any surgery as infection etc would be very risky ). In the USA I think there is a minority opinion it might be beneficial. It would be alot to go through on top of continuining treatments etc.
I hope taxol really does well for you. I don’t think you posted what region you are in - but we are having a meet up soon in London on 20th March, its good to meet in person. Its open to anyone with secondaries and it started out on the liver secondaries thread…feel free to come, everyone is really friendly,
Hi Lea
sorry to hear about your secondary diagonsis. I was diagonosed with bone mets(L hip) at the same time as my primary BC IN Mar 2007. I had surgery to repair my hip and commenced on zoledex and Femera. I had a good reponse to the treatment and 3 months later I had a left mastectomy and ALC (1/16 nodes affected) I have remained on hormonal therapy and my bone met remains stable…no further spread, no pain. As to whether surgery is beneficial there was a small study conducted in either FInland/Sweden which looked at the overall benefits of mastectomy after secondary diagnosis.
I can only speak for myself but I am glad I decided to go ahead with the surgery…as to whether it will make any difference to my overall prognosis well only time will tell.
Best wishes
Hi Lea
My bone mets were found after a local recurrence on my primary site. I didn’t have chemo 1st time round due to no node involvement and a very good prognosis - shows what figures are worth! I always wondered whether not having chemo has resulted in where I am now but after reading loads of posts for all I know I had it at the beginning. However, back to your situation. I ‘chose’ to have chemo for my bone mets as my onc’s initial choice for treatment was hormones only as I’m very Er and PR+ve. However we all decided to kick start the process and from my point of view flush out the system as it had presumably spread through my blood system. I had 6 xFEC last year and good shrinkage was seen in my breast lump (over 80% and possibly more as it’s located in the scar tissue) plus recovery/healing in my mets area. I have been told I won’t have a mastectomy unless the lump causes me problems. My view if it does then my other problems will be even worse! Also, as said above, the lump can be used to judge other treatments with a less invasive way than scans etc. My onc also used the ‘horse bolted’ reference so maybe we have the same one? I am now on Arimidex (and bone strengtheners) and will be having some scans soon to see how the hormonal stuff is working - hopefully very well! It does seem the norm to not have a mastectomy for secondaries, something I (and my family and friends) found strange to begin with but once I had more knowledge I understand the reasons why. I hope your treatment goes well and you get good results as well.
Nicky
Suspect however that the evidence is not great and probably the most important thing is what your own personal feelings are about the advantages and disadvantages of surgery. Could you ask for a referral to a breast surgeon to get their opinion and so you know more about what the surgery involves? Having had a mastectomy myself and breast reconstruction (at primary dx), I know it isn’t easy and I ended up with lymphoedema as well, so definitely some major disadvantages.
Not sure how well the argument about using it as a way to monitor the secondaries really holds up - I now have liver secondaries and they seem to be able to monitor what’s happening well without the need to refer to the breast tumour. Plus it appears to me from what many people post, that tumours in different sites may well respond very differently to treatment, so not sure how good a guide a tumour in the breast could be to what is happening to the tumours in the liver.
Sorry - probably just adding in too much information that is just going to confuse. Really do suggest you go and talk it through with someone, so you feel you have reached the right decision for you, rather than just being told!
I felt exacly the same as you after my spine met was discovered, I even found out about the study KatherineM refers to, but the study was far too small to be significant - so no real help there then. I thought that mastectomy would increase my chances of a longer life. I came to the conclusion that the reverse is true. Others have not. Certainly in this country it is the common belief amoungst the medical establishment, but it may be worthwhile looking at the American/Australian sites to see what they do.
Sorry that this has happened to you, but as you’ve already heard, there is still a lot of us alive and kicking thanks to medical advances - Herceptin in my case.
Very interesting, ot2walk - please can you tell us a bit more? What factors led the oncs to offer mastectomy? How were you monitored between primary dx and your op? Were you offered a choice whether to have surgery? What about the lymph nodes - could you have had mast. but no axillary surgery (with its risks of lymphoedema)?
A lot of q’s but very relevant for me personally.
I was DX in June and then had secondaries confirmed in my liver in September. I had chemo for my initial diagnosis and had had 4 doses at the time of my secondary diagnosis, my breast lump had not decreased in size during this time.
The team at my hospital were split on what my treatment then should be. The oncologist felt that I should have surgery or radical radiation therapy on my breast tumour and the Professor a surgeon and expert in endocrine therapy was proposing no surgery and hormone therapy.
In the end I had to make a call and at the moment I am on Arimidex as I was concerned that while surgery/radiation was taking place my liver met was free to grow as it pleased! After 3 months both liver and breast tumours were smaller, my 6 month scan is next month.
I have researched the issue and there is conflicting evidence, they did studies on mice that showed that on the removal of the primary tumour the distant mets grew (granted we aren’t mice) and then there were the studies in Sweden and I think the US that showed benefits, but these were not randomised and don’t take account of the site of secondary Mets, ER status etc etc.
I still am not totally convinced that I shouldn’t have had surgery but at least I can change my mind - if I had surgery that wouldn’t be the case. I was told that I could have surgery in the future if I chose to.
You need to weigh up in your own mind the pros and cons for you and push for the choice that you feel happy with.
Sorry to hear of your mets dx. I was dx with liver and lung mets before a primary was even located and my team didn’t rule out surgery, but their priority was to get the mets in my major organs under control (7cm at the time). The liver mets have reduced to just over 1cm now and the area in the breast has reduced too, but my lung mets have multiplied instead. So, when I asked recently about whether surgery was still in the treatment plan I was told that no studies have firmly proven that there is any benefit or longevity gained by removing the primary in women with metastatic disease. I was quite relieved actually - having spent the 10 of the past 12 months on chemo I have no desire to undergo surgery and reconstruction.
So sorry you have this dilemma. I think others have provided an excellent summary fo the current thinking around surgery for women diagnosd at Stage 4.
There is another issue that you might want to ask your doctors about. This is about the possibility of your breast tumour not responding to treatment in future and becoming a ‘fungating’ tumour: this is when a tumour breaks through the skin and becomes an unpleasant smelly wounds. This is an unusual feature of breast cancer but it does happen. I know about it because I currently have tumours in my chest wall and neck which are not responding very well to treatment and may eventually break through the skin.
I hope you don’t mind me raising this but I think it is something else to ask for more information about.
very best wishes for your treatment…and I hope you can soon feel as comfortable as possible about decisions around surgery.
Sorry Mrs blue, I don’t think I wa clear. The onc and surgeon were all for not having a mastectomy. The feeling being that once you make an incision, and therefore create a surgical disturbance it can all go anywhere. That is the fear anyway. I personally don’t know of any medics that advice otherwise. I hope this clarifies