Mastectomy or not

I was diagnosed with 35mm, grade 3, invasive ductal cancer on Monday & the consultant said that I should have a mastectomy. My breast nurse said she saw my face when he said this and said she would ask if there was an alternative. He said that he could do a WLE but they may not get enough margin & would have to operate again if this was the case. I have not yet had the sentinel node biopsy but they think the nodes are clear. Has anyone else had similar because although the initial thought of the mastectomy was horrific I was coming round to the idea and had investigated options and I am thinking I should trust his first decision. Everything feels a little rushed and I don’t feel I am in control.

Hi Samster and welcome to the BCC forums

Whilst you await valuable support from your fellow users you may find some of our publications helpful to read, you can look at these and read, download or order copies via the following link:

breastcancercare.org.uk/healthcare-professionals/publications/diagnosed-with-breast-cancer/

The first publication in the list is the resource pack which has been designed for those newly diagnosed so you may find this useful.

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Take care
Lucy

Hi Samster
So sorry to hear about your dx.
I to was told I would need a mastectomy by my surgeon at dx, then before I was due to go for the op I was given a choice of having a wle.
Obviously I chose the wle. I then had to go on to have a mastectomy as there were no clear margins.
This is my opinion only, but if I was ever in that position again I would definately choose the mastectomy.
It’s not an easy decision to make and I think you should go with your instincts.
Good luck
Chris x

Hi Samster, sorry to hear of your diagnosis it will be a real shock to you and the early days are the very worst and it so frightening not knowing what to expect or what it all means!

I was in exactly the same position to you, my surgeon thought my tumour was arond 2cm following the biopsy and there was no evidence of node involvment following an ultra scan.

I went for a Lumpectomy (WLE) although my surgeon wanted to do a mastectomy - in his words it will all be gone and be over with - however I wanted to keep my breast and I spoke to my GP and he said that surgeons usually want to ‘cut it out’.

I was warned that I may need a 2nd Operation but felt it was worth it.

However I was not lucky - he did the WLE and he did not get clear margins and I had to have another Op, a mastectomy and it was then they found the total tumour was in fact 9cm!! so a mastectomy was the only option really - however I am glad I tried to ‘save’ my breast but it wasn’t to be.

Also they did find node involvement and I had to have full clearance so this was done at the same time of mastectomy - so I would have had to have another Op anyway.

It is a really hard choice to make - and I can only tell you my experience - they never really know the size of the tumour until they have got it all out. Whatever you decide I am sure it will be the right decision for you - its worth speaking to your BCN and your GP (if he is ok to discuss this sort of thing with). You don’t actually have to decide until the day of the Operation and when you sign the consent forms.

You will find these forums really helpful and supportive and there are many different views and all are valid.
xxx

Hi

Sorry to hear about your diagnosis - it is such a shock, isn’t it and am sure we have all felt rushed and out of control when these decision have had to be made so you will get through it.

I was in the same position when first diagnosed and decided to go with WLE first after discussing with my surgeon. Unfortunately the margins weren’t clear and had to go on to have a mastectomy. There were complications with that surgery and the whole thing ended up taking a lot out of me. In hindsight should probably have had all done at start but i think I would always have wondered if the surgery had been too drastic.

Having said that, if you do decide to have a mastectomy its not too bad. You do get used to it - I didn’t have reconstruction and I usually forget about it completely during that day when wearing my prosthesis but we are all different.

All the best with your decision,

V

I would echo what saffronseed said; in a sense surgery is a crucial part of the diagnosis. The tumour can’t be accurately measured until it’s all out.

I had chemo first to try to shrink a 6cm tumour. had a good but not complete response to this, but still had a mastectomy, with tissue expander which was replaced about 5 months later (post rads) with a silicone implant.

Also remember that even if the current estimate of your tumour size turns out to be correct, removal of that amount of tissue will to an extent, depending on your overall size, make a dent in the breast anyway.

I also had full node clearance at the same time as the mx (it was thought only 1 node was affected but turns out it was 16), so again, nothing is certain until surgery.

I recovered very quickly from the mx, in hospital 3 nights, could drive after 9 days, felt pretty active, and haven’t had any restriction on my movements. To replace the expander implant with silicone, I was in hospital 24 hours, again recovered v quickly.

It’s all very shocking initially but I wish you well with your decision.

Hi Samster,
I can echo what the others have said. I opted for the lumpectomy and then needed a mastectomy. That said my boob looks great and I’m having the other one done to match! It is all very rushed but you should speak with your breast nurse who can show you pictures of before and after, let you speak with other ladies who have had the same op and try to quash your fears. It’s a mssive decision but my thoughts were …my daughter needs me more than I need my boob. You could even have the choice of becoming larger or smaller!

All that said I also had a lumpectomy several years ago and believed all was gone however back I returned in 2008. This time I knew it was cleared :slight_smile:

I’m sure you will make the right decision for you but get your worries out and talk to people.

You should get enough time to make your decision and discuss your options with your BCN. I was offered a lumpectomy but wanted a mastectomy (I just wanted it all off!), with hindsight it was the right decision as they found two invasive tumours and widespread DCIS, more than 7cm. Again, not what they expected to find. I had immediate LD recon without implant and the result is very natural. Wishing you good luck! Tina

On hearing my diagnosis, I immediately wanted a mastectomy because not only were my breasts on the small side, I felt I couldn’t live with them anymore! Anyway, the consultant calmly persuaded me to go for a WLE. I agreed because he took the time to explain everything very carefully. The breast care nurses were also very helpful. Anyway, as it turned out he didn’t get clear margins on the 1st attempt and following the 2nd attempt thought it would be better to go for a mastectomy due to DCIS being present. In end I had 3 operations - had a mastectomy but also immediate reconstruction. I wasn’t annoyed because I knew the consultant had done everything in my best interest and the final decision had been mine. Take care and best wishes for your surgery. X

Hi Samster

So very sorry to hear of your diagnosis. I can only repeat what all the other ladies have already mentioned. At my dx my surgeon said that she was happy to do a lumpectomy and remove some nodes or i could have a mastectomy. This was the hardest decision i have ever had to make and even up today of surgery i didnt know if i had made the right decision. i went for the lumpectomy and nodes but my surgeon did say that i might need further surgery if they couldnt get clear margins. got my result 2 weeks later and was told that i would need another op because they didnt get clear margins but luckily the nodes were clear. said she could take more of the lump or have a full mastectomy but i could have an immediate recon due to no node involvement. i chose to have the mastectomy and recon because i would never be sure if it had all been taken away. i had an ld flap recon with expander implant. when i got the results back of the breast tissue they had biopsied it was found that i had wide spread dcis and would then have said a mastectomy would have been the only option anyway. I felt comfortable with decision i have made even though they are not easy ones and I’m sure that you will do the right thing for yourself. I wish you all the very best with your decision.

Sending you a big hug, take care
Love Julie xxx

I think I’ll probably be too late but I went for a lumpectomy.

After my biopsy they estimated that the lump was about 1 inch and gave me the option of WLE or mastectomy. My surgeon recommended a WLE and I asked him what he would recommend if it was his wife. He said WLE because the research showed no difference in outcome, and IF it came back, it would be in the same area (and so not classed as a recurrence). No contest to me.

I had the WLE but the results were a 3 cm lump but with clear margins. I am a bit lopsided with one side being being about two thirds the size of the other, but with my bra and clothes on you can’t tell.

I’m happy with my decision.
Mal

Hi, your story sounds almost identical to mine.
I had a mastectomy with no node involvement. I am seeing the surgeon this week with a view to having the other one removed and double reconstruction.
I was told by my surgeon that if I had WLE my breast would be vastly reduced due to the size of the lump and margins, then lump was found to be bigger than first thought after MRI scan, so mastectomy was only option really.
You have to think of the psychological impact of having your breast removed also, but I have found that I was fine with my body from the start. I would rather have no breast than not be here.
I was also found to have widespread DCIS when pathology was done.
Although there are no guarantees that cancer will not come back in an alternative area, I am pleased with my decision.
I hope you have time to come to terms with whatever decision you make before surgery and wish you well.
Take care, love and hugs. Debbie. xx

hi Samster, my lump was firstly dx as an enlarged lymph node july 07 by biopsy andd ultrasound i had lumpectomy in aug 07 and was told it was a tumor with no clear margin and needed more surgery i was given the weekend (and a lot of leaflets) to think about it, my surgeon agreed to do a WLE with node clearance he used the same scar from the lumpectomy (although it was alot bigger) it turned out to be grade 3 ductal her2+ with 7/21 nodes and i did wonder if i did the right thing not having the mastectomy but 3 years later i have just had a reduction and uplift on my “good boob” (june 10) and things are looking ok. I agree about feeling rushed and also i didn’t know a thing about breast cancer at the start but i have learned alot in 3 yrs ( most of it from this site ).Good luck with your choice and any following treatment. Mizzy xx