Second time around

Pink

I had breast cancer eight years ago, had lumpectomy, radiation and five years meds. After mammogram in August they discovered dcis in other breast, after operation to remove they found small invasive tumour so had to go back in a week later for Lymph nodes. The decision I have to make now before 4th October is do I have radiation and another five years of meds or do I have bilateral mastectomy with reconstruction. Would love to hear from others. It may seem radical to have mastectomy but The stress this has caused my husband and I this time around makes me wonder if we can keep coping with the what if each time I go for yearly check up. I know there are no guarantees with mastectomy either so I am torn as to which way to go. Would love not to have to make this decision but other women's experiences may help me decide

melclarity

@Pink I'm sorry to hear of your story and yet totally understand exactly what you are saying. I was first diagnosed in 2011 DCIS left breast, I had a lumpectomy, radiation and Tamoxifen for 4 years. In 2015 I had a recurrence in the same breast, but this time IDC 2.5cm Tumor within a year in between my checkups, ER+ Stage 2, Grade 3. Nodes were clear. I had to have Chemo and no radiation as couldnt have it twice on the same side. I then went onto Arimidex January 2016. Due to recurrence my Surgeon and Oncologist recommended a Mastectomy, so a year after treatment finished in February 2017 I had a single mastectomy/diep flap reconstruction. I had genetic testing and it was negative, they all agreed that a double mastectomy wasn't warranted and I certainly didn't want it.

I have to admit, hindsight is a beautiful thing...although with the recurrence I couldnt have avoided chemo even if I had of done a Mastectomy then. I found chemo incredibly difficult and I'll be honest it's not something I think I'd do again if I have a choice. For me having been through it all, if I were unlucky again I would absolutely opt for a Mastectomy/recon again and no treatment especially if it is early. I only say that as I did aggressive treatment for DCIS in 2011 and it came back anyway. 

Lots to think about, but I absolutely agree and understand how you are feeling and thinking of how to proceed. Big hugs you know you're body and you know what you can and cannot do. 
Melinda xo

Brenleigh

I'm sorry to hear that. It is incredibly difficult to know what the best option is!  Sometimes I wished I didn't have to make those decisions. Mastectomy or not? I have an appointment in Nov for genetic testing. Hopefully I won't have the gene. Do what you think is best for you. It's never easy, if only we had a crystal ball! But would we really want to know

Pink

Thanks for your replies, see that's what makes me wonder if I should have the bilateral done,with you Melinda going through with the same as I did with one breast and you still got it back in that breast. I had Arimidex for three years but was so painful I ended up on Tamoxifen, so went through that and still got it again. I am truly torn between the decisions

melclarity

It is a hard decision, I honestly couldn't have made a decision for a Mastectomy it just wasn't something I ever wanted. When I had a recurrence however, I didn't want to tempt fate again, the Genetic Counselors were really good, they said the odds of me getting anything in the other breast is as the normal population as its separate. Hardest thing is all we have is what is here in front of us right now and where we've been in order to make a good decision. Having had my mastectomy/diep flap recon now, it wasn't nearly as psychological as I thought and I guess as the Diep flap is using my tummy fat and flap, so its all still me. I didnt want an implant and lucky I guess I couldnt have one as Id had radiation. 

I think I just learned that I had to make a decision that I could live with nobody else, and know I'd done enough for me and what I was comfortable with. It's so incredibly personal, so I say trust yourself, whats your gut feeling because that will be your best start. 
xxMelinda

Pink

Thanks, yes I am thinking that as I am still considering a bilateral/reconstruction knowing what a big operation it is that is the way I am being guided. I got my BRCA results back a couple of days ago and they were negative which is wonderful as also takes pressure off my children and grandchildren

Hankster

Having a mastectomy is a very personal decision it impacts your self-esteem and it can impact your relationship.  I had a mastectomy 13 years ago and I don't regret it for a minute my husband has been wonderful but it really needs to be a joint decision . I made the decision to have an implant  because it was a less invasive by surgery has worked well for me.   One thing it does do is remove the stress that will come back in the breast.  I would suggest that you and husband talk to a cancer council councillor to talk through the realities of intimacy with a reconstruction.  It has been no issue for my relationship but I know it is for others.  Don't be afraid just be informed.  You will make the decision that is right for you.  Take care

Pink

Thank you for that, lucky to have very supportive husband who will love me whichever way I go as yours obviously has, I am sure it will come to me and once it does my head will settle

June1952

Hi @Pink
I am sad to hear of your news.  I am 100% with you on the annual stress levels.  For what is it worth, if I have anything appear again I would have the second mastectomy and be done with it.  Ask all questions you need and good luck with your decision.
Hugs to you and your supportive hubby  Summer  :-) 

Pink

Thank you for your support, lot to consider. Cheryl

AllyJay

There is no right or wrong answer to this...each of us has to make the decision that is right for us. I had a bilateral mastectomy in April this year. That the left had to go was a given, but the right had shown signs of "abnormal geography". I was given the choice of biopsies, further scans and ra ra ra but I asked to have it removed too. Number of factors here. I'm 59 and, lets be honest, gravity, age , pregnancies and breastfeeding had taken their toll. My nipples didn't gaze cheerfully above the horizon any more, but looked rather forlornly towards the ground. I would have been very lopsided (having been a 18D), but most importantly, for me was the fear and stress of the right side going bad. I said to my surgeon, after she had gone through all the standard statistics about the second breast, that I felt as unsettled as if I was told that a registered sex offender lived next door to me. No matter how many assurances I was given about how this person would be closely monitored, ankle bracelets tracking his movements, weekly check in with his parole officer and so on, and the fact that I would probably, statistically, be safer as he was a known potential threat, rather than Joe Soap who could be more dangerous, but was off the radar, I still would not live there. I would move, but that's just me. As it happened, the post mastectomy pathology showed Atypical Ductal Hyperplasia as well as columnar cell changes in that suss right breast. Not cancerous or even technically pre cancerous, but abnormal, and would have needed very close monitoring. Not for me.

Pink

Thank you for that, I can very much relate to things going south. I have the same thoughts about that constant worrying and what ifs. What are the statistics or percentages though of keeping your breasts and going through treatment as opposed to mastectomy as far as reoccurrence is concerned. Any idea?

melclarity

@Pink interestingly I asked my Surgeon/Oncologist the same thing at my 2nd diagnosis in 2015, and was told there is no difference between a Lumpectomy or Mastectomy in terms of Statistics or Survival rate. Seems odd doesn't it? So when I chose the Mastectomy it was purely to stop it coming back once again in that same breast. 

Thought you might find this link helpful 
http://www.breastcancer.org/research-news/more-double-mx-but-survival-same-as-lx

Melinda xo

Pink

Thanks for that Melinda, will check out the link

primek

I had a bilateral mastectomy and reconstruction. I had an aggressive tumour that wasn't visible in a mammogram done just 5 weeks before I found a lump. I had very dense breast tissue and a really sucky family history. I wasn't keen on a lumpectomy due to my concern that local recurrence could be missed in mammograms due to breast density and my surgeon actually suggested the bilatetal and reconstruction, which I agreed with. Whilst I miss my breasts I don't regret my decision. It at least reduces the chance of local recurrence or a new primary cancer by 97% so I'm pretty happy with that. Of course it doesn't prevent metastic spread but that is why we do the chemo and tablets to try to mop any of those stray cells up. I know statistically a lumpectomy and radio usually gives equivalent results. ..but it wouldn't reduce my scanxiety. Kath x

[Deleted User]

I agree Kath. I had a left mastectomy and wish I'd had a bilateral mastectomy to avoid the yearly mammograms. These are very stressful.  I wasn't expecting the discomfort of reconstruction after the mastectomy though.