My wife has just completed six months of chemotherapy to which she has responded incredibly well. The latest MRI scan showed no trace of the original 8cm tumour. However, her surgeon still wants to do a full mastectomy on November 5th just to be safe, and has admitted that they won’t know until after the operation whether this would have been necessary or not. I wondered if there was anyone else on this forum who has been in a similar situation? Agreeing to an operation which may not be necessary is a big step, and my wife could do with some reassurance. Any thoughts gratefully received.
Hi Nige
I can see your point entirely - does seem a very drastic thing to do if the tumour has gone. However, I do know that until they examine the breast tissue under the microscope and stain it with special dyes to determine whether cancer is left or not, there is no way of knowing for sure. I can’t speak about breast cancer but my son had a similar situation. He had cancer of the kidney as a baby. Had chemo and scans showed all signs of tumour gone but he had to have his kidney removed anyway which at the time I thought exactly like you did. When the pathologist examined the remaining tissue, he did find a small amount of cancerous tissue left which the scan could not pick up as so microscopic but which would have gone on to develop more cancer. It is a tough call, but I am glad in my case I went with the advice and opted for the surgery as well. I think as good as the scans are, they cannot pick up every last cell which the pathologist can
Good luck with your decisions.
Hi there
First of it’s important to recognise the fantastic news that the chemo has worked so well!
I had a similar size tumour (lobular cancer) and had 4 lots of chemo first, then mastectomy, then further chemo and I am about to start radiotherapy. My tumour noticably reduced each time I had chemo prior to surgery. I could still feel the tumour just about when I went for surgery. The surgeon told me that all he could feel was some thickening of tissue when he operated. However - that tissue when it went off to the path lab was cancerous.
I was advised that I would definitely have a mastectomy whatever the chemo outcome because of: size of the tumour, the cancer was multi-focal (in more than one place). So some of it may depend on how the cancer presented in the first place. I was also told that the greatest risk was local recurrance.
I think it is a question that you do need to raise with the Consultant so you are clear why they still think a mastectomy is the right route.
Terrible though the surgery is it is potentially life saving. It is difficult with the treatment because there are no absolutes. I had all my lymph nodes removed in case the cancer had gone to all three layers but it turned out that there was no cancer on the top layer - they wouldn’t have known that though without removing them.
If I was in your position I’d be having a chat with the surgeon and the oncologist to find out more information. On thing I have learned through all of this is not to hold back if I have questions or I’m not sure if something is right.
good wishes to you and your wife
Elinda x
At the moment, I have no evidence of disease, and I am aware that several women on here have gone on to have mastectomys. However when i asked my onc about this, he is of the school of thought that this is more likely to spread the cancer rather that the opposite. So i just don’t know. The traditional route is not to do mastectomys I believe, but the mastectomy route seems to be supported by surgeons at the Marsden and i believe in Australia and perhaps the states.
I’m not sure this helps - but last time i looked there didn’t seem to be any studies to support mastectomy - perhaps there are now.
Best wishes
Hi there
Just wanted to say that I had a mastectomy due to widespread DCIS (ductal carcinoma in situ) in addition to a large lump. To me having a mastectomy makes sense as maybe it’s possible for small amounts of tumour to remain without the traces being spotted by any of the vehicles that are in place to pick them up. I am about to have a mastectomy on the good side soon. My attitude, I’d rather get rid of both of them if they’re likely to grow anymore bad stuff in the future and the sooner the better.
Ruby
Hello
I’m afraid there are three points here:
-
We are not ALL told that surgery is actually diagnostic, in other words they will say afterwards that they did the right thing - they would, wouldn’t they? They will not say “oh heck we removed your breast when it really wasn’t necessary”.
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In the UK surgeons do not routinely practice breast conserving surgery. Many are all too keen to remove breasts and very many women think they ought to have them removed when in fact better surveillance would serve them and reassure and leave them intact without the emotional and physical carnage wreaked otherwise. NB: so-called breast reconstruction also wreaks its own havoc.
-
We are NOT encouraged enough, in my case actually refused, to seek second opinions when such important decisions (for us anyway, perhaps not those wileding the scalpels) have to be made. We generally get the paternalistic surgeon who wants you to behave and conform to some kind of “norm” rather than giving you ALL the information you need to make a FULLY informed decision and proceed with INFORMED and VALID consent.
Some women are fairly sanguine about breast removal and “oh my life has been saved”, for others it is a personal trauma or worse and my view is that we are not all always given enough time to digest whatever facts we MIGHT have been given.
I have a friend whose behaviour was manipulated by a surgeon. She was in shock at her diagnosis and vulnerable - we are in in this state at diagnosis but we should still be treated like adults and given whatever we need to make OUR decision and NOT have surgeons coercing us into something we live to regret. SOME women might rather stay intact and risk the consequences, others might not but the decision is ours and not theirs.
Your wife is ENTITLED to a second opinion and a third if she wants it.
Not to sound patronising but good for you for doing some research.
Hi Nige,
I am in a similar position in that I had a lump removed some weeks ago (I was lucky enough to have a surgeon who wanted to try and save the breast) but, as there weren’t sufficiently clear margins I am having a mastectomy next week.
I struggled with this for quite a while for the same reason as your wife. On my mammograms the only thing that was visible was the one small lump I had found myself, otherwise it all looked clear. So it was a surprise when they found a few more lumps (both invasive and non-invasive). Why weren’t they visible on the mammograms or ultrasound scans? I now understand (I think) that the breast tissue itself can obsure the image, particularly if it is quite dense.
I initially felt that I might opt not to have the extra surgery, but friends and loved ones started to make me think again.
I have to say that it has taken me 4 weeks or so of thinking, researching, asking for help/advice from this forum, talking to others to gradually make up my mind what to do. It could take longer, I guess.
I have a different surgeon doing my mastect and when I met him for the first time I took the opportunity to really quiz him including about the pathology results from the lump I had removed. He was much more informative than the first surgeon. I learned that the bc was stage 3 invasive (not stage 2 as I thought, like that of my biopsy) and more widespread than I had understood. Ironically, being given a worse picture helped me to decide that it was serious enough to go ahead with the mastect.
I was also offered an immediate reconstruction. I don’t know if your wife has, or if this is something she could consider at a later stage? Perhaps this might help. I have heard good and bad about recons - it really is a personal decision, but I have decided (I think!) to go ahead with mine. A lady I know had a mastect with a view to having a recon later, but is now happy as she is.
I agree with Cathy59 - it is really only when the tissue gets to the path lab that it can be known for sure if there is any cancerous tissue there.
My heart goes out to your wife, I really do empathise.
Sorry - I have gone on and on…
My best wishes to you both xx
Nige,
a P.S. …do try for a second opinion, as Dahlia has said, if your wife wants to. My bc nurse was very understanding about that and said it would in no way be held against me.
Many thanks to you all for taking the time to answer my husband’s request for help. The oncologist and surgeon are absolutely unequivocal in the need to proceed with this surgery, given the initial footprint of the cancer and the fact that it had spread to my nodes. I agree with the comment that surgeons are all too keen to “wield the scalpel”. However, I am very fortunate in that I have been able to change surgeon and now have an excellent (female) surgeon whom I trust. The first surgeon made me feel like I was on the cancer conveyor belt.
I have done a vast amount of reading around the subject but this is no substitute for seeking advice from people who are actually living/have lived through this and have come/are coming out the other side.
My very best wishes to you all.
gardengirl
A good posting.
The reason your disease didn’t all show up on mammogram (and I know I sound like a broken bleedin’ record!) is because they are only, AT BEST, 80% effective and if you happen to have young tissue or dense tissue or fibrous breasts then believe me 80% is well over estimating it. If you have (and don’t know you have)a genetic mutation then the percentage reliability can be as low as 23%!!! It is written up and has been researched, MRI is far far better AND there is no risk with MRI as there is with mammography.
Ultrasound also picks up areas of suspicion that mamography will just “overlook”.
Sorry, using it for dignosis/screening is one thing (and not a good thing either actually) but relying on it after a diagnosis is sheer madness in my opinion. I’d be long dead if I’d relied on schmammograms!
Hi Dahlia,
Thanks. Sorry - you probably have put all this somewhere on here before but I haven’t been thro all posts, so thanks for the info re mammograms. (I did ask about an MRI or other scan but was told it wouldn’t make any difference…!)
Yes, I’m beginning to understand that the screening process is not an exact science…and I always thought mammograms were a fail safe method …! Ho hum.
hya,
I am in totally the same position, I had three tumours aggressive grade 3 with lymph node involvement,diagnosed in march.Ive undergone chemo, its just been stopped early due to my bone marrow couldnt take anymore.I had an ultrasound and mammogram,they said that if I was a new patient they would send me away with nothing suspicious found,yet im awaiting the surgeon to ring me today with a date for a double mastectomy and immediate recon.Im so scared,but in my opinion id rather get rid of the breasts just in case theres anything lurking,im also on herceptin. I always go back to what my mom said about my grandad,they opened him up and afterwards the cancer spread everywhere.
Its a worry and a personal decision.Ive been told my bmi at 33 is dangerous for the op and i have two weeks two lose a stone which i only put on due to being extremely poorly with chemo side effects !!
It helps to know I’m not alone. Even if we are in a crappy situation together !! take care sharon xx
Nige/Mrs Nige,
I hope you will come to terms with the decision about your proposed mastectomy on Nov 5th. I think I might be in a similar situation in that while I’ve not yet completed my chemotherapy (another 6 doses of weekly Taxol to go !) I’ve had a fairly good partial response so far to the drugs, and will be having another examination next week. At the moment my initial 5.7cm lobular tumour is down by 35-40%. My surgeon has said he’s strongly veering towards mastectomy because of the initial size and because I’m not the most generously endowed lady a WLE would in any event be disfiguring. Like you I’ve done my own research too and I have come to terms with the idea. All along I’ve tried to invert the horrors of this disease into positives, so I don’t if possible dwell on the Se of chemo, rather I think great here comes the heavy artillery. Similarly, yes i will lose a breast but with it will go any remaining sub microscopic traces of the Big C…Oh and then there will be radiotherapy. Are you having that too ?
Very best wishes for your op and wishing you speedy healing and a good result.
I have no regrets about having a mastectomy - but that is not say that I have found it easy. I think every case is individual so it is important to look at all the factors. My surgeon is actually very keen on conserving the breast where possible but was absolutely clear it wasn’t an option in my case.
I was the opposite from some, the first surgeon I saw said I would be booked in a for WLE and I had no lymph node involvement. From what I could feel of the size of the tumour I just didn’t think that could be right and I was very worried about it. I got a second opinion and was immediately told that I had lymph node involvement (later verified by MRI) and I would definitely need a mastectomy. I was given more time and much more information from the second surgeon who I felt saw me more as an individual and when I saw the Oncologist he was in total agreement about the course of action.
What I would say is to be pro-active through all the treatment - ask questions and get advice when you need it. Don’t be afraid or embarrassed to do so. I found it very hard at first but I had some counselling and as she said to me ‘no-one has the same vested interest in your body as you do’.
very best to everyone with their treatment
Elinda x
Just a question, (as I didn’t have chemo only WLE and rads.) What is the point in having all the chemo first to reduce the lump and then having to have the breast removed anyway? Why don’t they do the mastectomy first then do the chemo if they find the lymph nodes are affected? I would definitely have asked the question had I needed to.
In some cases the operation will be technically easier to perform if chemo is given first. And for some people (not me or Nige) it can make the difference btween ending up with a WLE as opposed to a matestomy. In my case there is some node involvement too. I was given the choice of whether or not to have neo adjuvant chemo (ie pre op for those who are new to this !) or surgery first followed by chemo. I reckoned that because I had/have a largish tumour I wanted to try to get it shrunk somewhat. Also after surgery there would be an inevitable delay of some sort before chemo could start, plus the possibility of further delay if for example the wound got infected etc so I wanted to start straight away on the global drug treatment for those reasons, not to mention the fact the drugs could start straight away with zapping any further undetectable tiny cells too.
Hi
As Onestep says, if a tumour is large then to shrink it first with chemo will make it far easier to remove. As the success of surgery, either WLE or mastectomy is very dependant of obtaining clear margins, then shrinking the tumour before removing it is more likely to have a good outcome than trying to remove a large tumour. This procedure is done for many types of cancer where the tumour is large.
Hi Nige,
I was diagnosed with Lobular BC in Feb this year. Nothing showed on mammogram or ultra sound but my surgeon could feel a large lump about 8.5cm. He said I should have 6 chemo then a mastectomy then 13 radio. I first had my sentinel nodes removed and cancer cells were found. I had 7 chemo and was told the tumour had shrunk and was no longer visible but the lump was still there. On 9th Oct I was thrilled that the surgeon was doing a WLE and he was confident of removing all the cancer. I am shocked now to be told that cancer cells were still throughout the tissue removed and I have to go back next wed for a full mastectomy.It’s like being on a roller coaster and now I wish I had not been given supposedly good news but been told to wait for results. I have only got a few days to decide but I honestly can see no other way to go. My trust has been tested by what has happened but I can see no other way out. My heart goes out to your wife as I know exactly what she is going through.
I would like to comment on my own case. I was diagnosed with breast cancer in August 2009 in both breasts after having endured 4 biopsies, MRI scan, ultra sound and mammograms. After my diagnosis, when I was very shocked and vulnerable, the surgeon immediately tried to rush me into chemo with a view to shrinking the tumours and then surgery poss full mastectomy. My suspisions were immediately aroused, as I felt strongly that there were alternative ways of dealing with the cancer. This view was dismissed and ridiculed by the surgeon.He tried to put psychological pressure on me, saying’ you want to be alive to see your grandchildren etc etc’. I was also advised not to read up on the internet about cancer in case it ‘put me off’ treatment.
Being a bloody minded individual I immediately started weeks of research, and what I found out about the cancer industry really scared me. I immediately refused the tamoxafin prescribed and any further treatment
I then devised a healthy, meat diary and caffine free diet for myself, trying to alkalise my body. Anyone who is interested can do their own research it is out there. I am still alive, with my tumours, I feel terrific, I have lost weight and am leading a healthy stress free life, in spite of the dire warnings of my surgeon.I am only talking about my own experience, it takes guts and courage to refuse conventional treatment. But there was a clear choice in my mind. What is the point of getting rid of your tumour if you are going to end up dead from Chemo and surgery. I want to live and if that means living with the tumour then so be it. I have every hope that I can get rid of it myself, like the thousands of other people on the internet, who the medical profession ignores and ridicules.
It’s really down to personal choice and what you think is right for you, but I always thing of women like Caron Keating who rejected the conventional route for the alternative and who have since died (I have read some reports that alleged she refused Tamoxifen because she didn’t want an early menopause and had she agreed to it it could have saved her life).
When I had my lymph nodes removed and was 2 weeks away from starting chemo, a hypochondriac relative of mines who is into all sorts of unconventional stuff gave me a book about not having chemo and I have to say I nearly went ballistic as I was very offended. I decided to have no contact with her throughout my treatment as she is constantly googling for stuff on the internet and reading research she doesn’t really understand - she buys “cures” from the internet as well and spends £200 a time on a “practitioner” who rebalances her. He offered to do this for me as he claimed I had BC due to my breasts being full of aluminium, absolute tripe.
I have a relative who is very senior in Oncology and who kindly gave me advice after I was diagnosed. I had no reason not to trust what he told me. Personally, I was glad to be rid of my tumour and to throw everything at it. I could not have lived with a dangerous alien being in my body and I find it quite scary that whilst I had a very aggressive and fast growing cancer, I did not feel in any way ill.