After a lumpectomy and what I assume was a cavity shave my surgeon recommended a mastectomy which is what I had Not a pleasant experience but for piece of mind I’m glad I did
Not at all-I hope it's been useful.A year later it's probably easier to see things more clearly.Having to make major decisions at such a stressful time all adds to the emotional worry along with the fact you're still recovering physically.By this time last year, I was having to go alone to appointments, as I imagine you must be, and that makes it much harder . One thing I should add is some of my friends felt the surgeon hadn't done a very good job not getting everything the first time!(Even so many months later, you always remember the odd comments...)On the contrary, I could see later that he was being very careful and cautious. It did strike me afterwards that it was a bit of a lucky dip ,and particularly if you have a smaller tumour, and it's not so easy to find.
I'm feeling pretty well now, thank you-still slightly fatigued at times from everything and probably the medication -but generally back to being able to do what I could before and more importantly , I don't wake up every morning and think about it-something I would have found hard to imagine a year ago. I hope you're able to reach that stage, too, even if it still seems a way off.I can't pretend I am looking forward to the mammogram but I also feel very reassured that I'm in the system and being checked regularly so if anything were wrong, it would hopefully be found pretty quickly.I see my oncologist every 6 months so effectively, I see one or other every 6 months and I know they work as a team & I can still phone my breast care nurse if I have any niggles or worries.My oncologist gave me a good rule of thumb which was that if I had new symptoms my GP couldn't resolve in a month, ring his secretary-which reassures me I would be taken seriously.
I hope your appointment today went well and you were able to get answers to your questions
Take care 🤗
Thank you so much for taking the time to reply. It is very helpful. I have just seen this. I have an appointment today so feeling more hopeful thank you. Reading about mastectomy was very scary. I hope you are doing well now. Thanks again x
I'm so sorry to hear you are in this position , having already had 2 operations-and not being able to see your team for appointments makes life so much harder.
I had a broadly similar experience so hope the following is of help.
My original tumour , picked up at screening, was 1.5 cm ,so very small and grade 2 and oestrogen receptive. I had a lumpectomy last January and then had to go back for a re-excision in February as my margins weren't clear. So far , so good and I told myself it wasn't unusual so nothing to worry about-I believe the statistics were it happens to 1 in 5 women.The biopsy showed a very small new cancer and DCIS on the margin.
After operation number 2, I got my results-still DCIS on the margins and my surgeon offered me a 3rd re-excision(at this point, we were just about to start lockdown which added to the stress levels!) .I asked if a mastectomy would be better at this point but my surgeon felt he could still remove everything and I was offered re-excision number 3.(I think I was lucky as some hospitals wouldn't give you that option-I should add that I was treated at a centre of excellence with a very good local reputation so have trusted all my team's decisions all along).
Fast forward another 3 weeks and results appointment number 3 and guess what?!-still one margin not clear by a matter of a fractions of millimetres-so back for re-excision number 4 .My surgeon did offer me the choice of a mastectomy at this point or operation number 4 and I chose the latter as I really didn't fancy coping after such a major operation during lockdown as I live on my own -and the result was clear margins all round-eventually!
So looking back , what would I say? Two pieces of information which really stuck with me-as you never hear and remember everything , do you?.Firstly, when I discussed with my breast care nurse at one point, she did say my surgeon had a reputation for being extremely careful, and whereas some surgeons might leave the one remaining micro-margin and rely on radiotherapy to destroy the DCIS, he was always cautious -so I suppose a question to ask is the size of the margin. Secondly, the words of the registrar during my last pre-operation chat -when I expressed my lack of faith in this working, as I thought they would keep finding DCIS cells ;he pointed out that if that were the case, why would they offer radiotherapy which has an excellent reputation for destroying them .
I think it's obviously worth asking what other treatment they plan.
If it's any help, I had 1 positive lymph node out of 3 from my sentinel lymph node biopsy, for which I received radiotherapy to a wider area including my underarm and collarbone ,for 15 sessions.I am now on Letrozole, an Aromatase Inhibitor, for 10 years, as my cancer was oestrogen receptive, and bisphosphonate infusions every 6 months for 3 years to hopefully reduce the likelihood of cancer returning in the bones.My oncologist explained to me the reasoning behind all this and the likely survival rates by running my situation through the Predict programme.I am seeing my surgeon next month for my first annual review and mammogram and these will continue for 5 years.
In retrospect, it was pure torture and I really feel for you with all the waiting-it's awful, and I so sympathise.However, I am very glad so much effort was put into avoiding a mastectomy and I suppose I trusted my surgeon and then my oncologist.If they were really concerned, I feel they would not have given me a choice but pushed for mastectomy . But it hardly feels like a choice as we can none of us predict what will happen!
I hope you have a chance to discuss it more fully at your appointment.Wishing you the best of luck !
yes I would deffo go for an implant but not until you have finished your radiotherapy treatment
I went through something similar I was told don’t have a mastectomy as there are more negative options so I didn’t have a mastectomy as I had cancer in my lymph node as well also like you had a shave taken, so I went for my op saved my breast and went for 3 weeks of radiotherapy, I’m so glad I chatted to my consultant first as if you have a mastectomy you will lean on the side your breast was removed remember they go right to the muscle I did google a video of a mastectomy and I didn’t like it so I was happy to take the chance with just the lumpectomy and go for radiotherapy , yes you will have good days and bad days you will become very emotional it is very hard to take in that you had a cancerous lump removed and now your on a road to recovery, this is just the start of your journey , I made a diary for myself with photos from day one of my op and I’m so glad I did so try something like that as it will help you understand it more if you need leaflets about everything you have just gone through ask your cancer nurse that is what she is their for so I wish you good luck hope I have helped you to make the right choice as my surgeon helped me make the right choice take care ,
Yes thank you, I’m fine. I had a skin saving mastectomy with nipple removal . I chose to have a temporary implant over my muscle to reduce the risk of complications . Although it is different to my natural breast I am really pleased with the result and actually think I will just keep it as it is for now. I’m seeing my onco plastic breast surgeon yearly to discuss how I feel about changing the implant or getting a DIEP but for now I’d rather not go through any more surgery x
Thank you for telling me your story. Hope you are well now. Do you mind me asking what you think of the reconstruction? You don't have to answer though. Just wondered. Thanks
Hi @cazb im sorry to hear about your recent surgery and difficult decision.
I went straight for a mastectomy as I had IDC and dcis.
It was initially thought I only had 1 tumour but following my surgery they found 5 tumours they were all small , but all together there was 7cm of disease including DCIS.
I have to say I am pleased it was all taken and do sometimes think what if I hadn’t had a mastectomy would they have found all the dcis?
I am happy with my decision and was lucky enough to have immediate reconstruction and because of the mastectomy I didn’t need radiotherapy . Good luck with your decision
Hi. I had a lumpectomy in February. Unfortunately the margins weren't clear. I then had a cavity shave in March. My results for this are close & I've been told I have pre-cancerous cells/DCIS. I have been asked if I want a mastectomy 🤯 /or close monitoring & radiotherapy maybe enough. This information was via phone call with my nurse so I don't have a clear picture/all the information to help with my decision until my appointment late next week. Has anyone had the same experience? Has anyone had more than one cavity shave? I'm so confused 😕 All the waiting is torture. Thanks