Could do with advice - quite urgently!
Hi all
I had a wide local excision two weeks ago, after being diagnosed with grade 2 lobular breast cancer at the end of Jan. Had hormone therapy for 3 months followed by neo-adjuvant chemo for 6 months, the latter of which worked really well and shrunk a pretty massive (8-9cm) tumour. The results are back from the op and surgeon is pleased generally - however, she compares tumour to block of ice, it has melted but pool of water remains - so we are going to need to go back in to get clearer margins. Following a meeting about me, some of the docs recommend a masectomy - they say even if margins are clearer after another wide local excision, that the cancer could come back in 10 years (I'm 40 now) so am beter off with a masectomy. I need to decide within next few days and I just don't know what to do. I always said that if I had a masectomy, I would do a double (risk reducing in second healthy breast) as I feel the pscyhological impact would be no worse and I would definitely want reconstruction surgery. Now my surgeon is talking to a few more people about me now as I type, she thinks another wide local excision could do the trick and that the risk of it coming back would be alleviated by radiotherapy in the new year - obviously there is still some risk, I appreciate that. She also says that if the margins are not clear, then the masectomy will be next step. No one is telling me what to do, the decision is largely mine to make. I think it'd be easier if they'd just make my mind up for me!
Also another question: She says if I have a masectomy, I would be up to year waiting for reconstruction as have to have radiotherapy first. They do sometimes do immediate reconstruction after surgery but she says the cosmetic effect may not be as good if I have to have radiotherapy afterwards. Anyone done this??
Comments
I was in a similar boat nearly three years ago. Did not get clear margins after surgery no 1. Given my age (39 at diagnosis) and the fact that the cells were grade 3, mast was recommended. Although I was devastated at the time I am glad that I opted to take out the boob that was "trying to kill me". Immediate recon was not recommended as I needed rads so I was a uniboober for about 18months. As I had surgery first I was going thru treatment for nearly 8months of that 18 months.
Only you can make the ultimate decision. Most people don't regret the decision to have a mastectomy as it give peace of mind. You don't necessarily have to get rid of the other one immediately, you could have the other off at the time if the recon.
I think a apt with the plastics team might be in order. You don't have to rush this decision so don't let the medics pressurise you. Get them to get you an early apt with the plastics squad and then you can make an informed decision.
Hope this helps. Post or pm me if you have any more questions.
Good luck
Lindylu
Hi Kazoo,
Like you I was dx with ILC( Lobular). I decided to have a double mastectomy and it's nearly 4 months ago now and I'm heading for my third round of chemo. I didn't have to have radiotherapy at all. I had the right healthy breast removed because of the "Risk" of re occurrence and there were two tumours in the left breast. Being dx at 38 with 4 children, it didn't take me long to decide what I was going to do, I didn't want to go through this twice, end of. I have never regretted the decision and yes there is scarring but hey when I have reconstruction next yr, who's to know with the new boobs!!( People will think I had a boob job!!!LOL). I personally am not bothered by the scarring or the fact I don't have boobs at the moment, it would be worse if they were telling me it's my legs they had to remove , now that would be life changing.
The decision is really up to you Kazoo and do not let anyone rush you into a decision and to let you know no matter what you decide we are here for you always.
Blessings
Mimiraffo.
Hi Kazoo,
The other thing to consider is that after the wide local excision your breast will be a different shape. Mine was pretty funny looking and the plastic surgeon actually said she could get a better result from a full reconstruction rather than fixing my breast after the local excision. All the more reason to speak with your plastic surgeon and if you have health insurance you can choose your plastic surgeon.
Hi Kazoo!
Life would be too easy if they made the decision for you!!! As suggested here, surely you can take another week or two to look into your options?
I had mastectomy with immediate reconstruction using the latissimus dorsi flap with an implant. I had chemotherapy after that and radiotherapy.
I had no choice but to have a mastectomy but I did have a choice on whether to go ahead with immediate reconstruction. Ultimately, my decision was based on the fact that my health wouldn't be compromised, so once I was assured that there would be no difference in the outcome of my prognosis then I decided to go ahead with the Imm Rec.
So today was my last day of radiotherapy and I am still happy with my decision. However, my breast had shrunk and there is encapsulating (that's when the muscle hardens & starts rejecting the implant) but this is not as a result of radiotherapy - it had started before RT.
If I had to make the decision all over again, I would still get the immediate reconstruction. We are all advised that reconstruction can go wrong, and I have spoken with one woman who had it done a year after her treatment finished, got an infection a year after that and the implant had to be redone. Ultimately, we just don't know what is going to happen but this has been my own experience. My biggest piece of advise is go with your gut instinct. Best of luck to you Kazoo, you deserve it x
Hi Kazoo
Firstly, take a deep breath and take some time to think about what you really want to do. A week or two will not make any difference. I had mastectomy and immediate reconstruction and am having radiation at the moment. The breast surgeon and plasctic surgeon had a word with the radiation oncologist and she was happy for me to go ahead and have the reconsctruction. I had the Diep reconstruction where they take your tummy fat to make the new boob. The op was over 8 hours and the recovery is not easy but well worth it. The benefit of the Diep is it only uses your own fat so no implants, thus reducing problems wth capsular contraction from radiation. They are giving me the radition over a longer period of time with a lower dose so as to reduce issues with damaging the reconstruction. There may still be some skin problems but plastic surgeon says he will be able to sort them out and to be honest, I am not too concerned about the scarring at the moment, am just happy that I am doing everything I can to make sure the cancer does not come back.
Girls, thanks for all your advice, experiences and kind words. I love this site, it really helps to know people understand. I have decided with my surgeon to go in for another wide local excision on Weds and if the margins are not clear, then a masectomy is the next step and I think I have accepted this. I am still unsure about a double masectomy, but this is not somethng I will rush into. I'll keep you all posted, thanks again xx
First of all take your time on this decision, an extra few days or a week or two is not going to make any difference.
I had a mx and immediate reconstruction. My breast surgeon consulted the radiotherapist and they were confident after the mx i wouldn't need radiotherapy. For that matter I didn't expect to have chemo either but after the mx they found micro invasion and I am now just finishing my TCH chemo. The chemo has not affected reconstruction and I am very happy with it.
You should ask to speak with the plastic surgeon on how the radiotherapy would impact the reconstruction. It varies depending on what type of reconstruction you are having. Also maybe check with the radiotherapist if you definitely need this treatment after the mx. It isn't always required as everything has been removed and clear margins are found.
Not sure if this helps but ask the different doctors and don't be afraid to get a second opinion either.