Treatment options for recurrence

Hi Melinda,

Thanks for your post.  It seems we are both in the decision making process at present.  Your circumstances seem to be that you may have had a more aggressive cancer that what mine has been.  I also have been lucky that I have not had chemo and think that if I did it may have affected my choices as it appears to be doing to you - understandably.  We are similar in that we are both monitoring at present but your doctors seem to be a bit more definite about the treatment recommendations than mine.

My doctors seem to be on the fence and say it's my choice. As I have already said - they say the "recommended procedure is mastectomy" but follow it with the statement that I can also choose to monitor.  Which also comes with risks of course.  That does not make it any easier to decide.  I am going to talk to my oncologist more this week to check a lot of the figures I have been told so far.  Also I will discuss the seroma that was found on the ultrasound last week as the breast surgeon said that it will probably get absorbed by my body but I have read a bit about them and it seems that they are often drained because of the increased risk of infections they can cause.

So, hopefully I may get a bit more info from the oncologist.

I wish you well with your treatments and hope that your treatment direction becomes clearer for you.  I hope you are feeling well soon.  Thanks again for your input.

Cheers, Pauline xx

Hi Beppie,

Thanks for replying.  You have posted replies to my previous posts and I have read some others of yours.  I have been wondering how you have been going.  I hope you are feeling better and have had some better results by now.

I too have had complications from the first lot of treatments but not as bad as what you have experienced.  So I am sorry for what you have been through.  I developed lymphedema in my breast after finishing radiation treatment and that has caused a lot of discomfort and at times pain.  In the last few years I have had numerous infections which the doc thinks is because of the compromised tissue from radiation and the lymphedema.  At one point he thought I may have had inflammatory breast cancer because of the amount of redness and swelling but after more ultrasounds and biopsies it was concluded to be infection.

I have been to see two plastic surgeon who both seem to be quite good and gave informative opinions.  One of the main issues I have at present is trying to make the decision to have a mastectomy when I am being told it is the "recommended procedure" for a recurrence but then being told I could choose to monitor and take Arimidex.  But then also being told that they don't have data on women who don't have a mastectomy because most women have it.  This is like going around in circles.  It is not like having a mastectomy if a small thing to do.

Anyway, I do appreciate your reply and I will keep trying to just gather information to make the decision that I feel is right for me.

I hope you are doing ok.

Cheers, Pauline xx

Hi Kath,

Thanks for your reply. I was told by one of the plastic surgeon about the option of taking muscle from my back and bringing it to my chest to enable me to have an implant.  She had said that after having radiation treatment previously that my chest muscle on that side would not be viable to do the job. The other PS did not want to consider implants due to probably complications from the radiation treatment.  I also did not want to consider implants so the only possibility that I seem to have is tram flap. 

My thoughts are that if I have the mastectomy I have to go into it knowing that not having reconstruction is probably more than likely the long term outcome for me.  That is why I am thinking for so long about it.  No surgery comes without it's problems - even after recovery.  That has been my past experience.  But yes, if the risk of further recurrence is high then it is the best option for survival but the doctors appear to be so on the fence about whether to go one way of the other which does not make decision making any easier. 

Thanks for your input and feedback. 

Cheers, Pauline xx

I am 38, have had a double mastectomy 10 weeks ago, no reconstruction. No plans for recon because I am "not suitable" because of other chronic medical conditions. I am quite happy with the way I am, I do not miss my boobs, I do not need them and they just got in the way anyway :)
Also, I have a seroma. So far I have had it drained twice. I was scared it would hurt to have it drained but it hasn't. The last time I even helped by squeezing and pushing the area around the seroma. LOL. They do feel better after they are drained - but so far mine just re-fills within a week. Current plan is just to leave it and see what it does o  its own - see if my body can re-absorb it itself. If it does start to bother me in anyway though, pain or any other way I can call them and they will drain it for me. I also have a binder I wear to put extra pressure on the area. It is very tight and uncomfortable, but I find I gt more uncomfortable not wearing it.
Good luck with your surgery and and other stuff, no matter what you choose. You need to choose what YOU feel is right for YOU. No-one else, YOU! XOXO

I am afraid I can't help much about your difficult choices but I can advise on a seroma, as I had a much larger one for a year. With hindsight and in discussion with your oncologist, I would suggest massage ( a good lymphoedema specialist preferably) to help disperse the fluid as soon as possible as it's not just annoying, it creates a nice warm wet place for bacteria. 

Good luck whatever decision you make.

HI Pauline,

Ok, so similar to you, I had BC 2011 DCIS, lumpectomy wide margins, radiation and Tamoxifen for 4yrs. 2015 it came back in my scar tissue :( inspite of treatment. Being a recurrence I then had to see an Oncologist as I had IDC Stage 3 Aggressive. My only option he gave was Chemo and then a new Hormone tablet. Like you Mastectomy was discussed after Surgery and diagnosis last year, I was told however it was not urgent as all results were good. I could choose to be monitored for a bit. However mastectomy is something my Breast Surgeon and Oncologist have been pushing since I finished Chemo in December. I started Arimidex in January, dont really notice any side effects at all. I get hot flushes but Chemo threw me into menopause. 

So you can be monitored on Arimidex and see how things go...or mastectomy. That was my options too. Im now getting my head around, I dont want to go through this again, I cannot face Chemo. So looks like Diep Flap Reconstruction, but Surgeon said it isnt urgent. All Scans came back clear this month. 

Hope that helps, Melinda x

Hi Pauline, 

You sound like me. Breast cancer 2004 - lumpectomy ( lobular) and radiation and 5 years of Tamoxafin . Margins not clear enough so a further 2 surgeries a week and a month later, but axillary clear. One more operation for a large seroma to be removed a year later. It was like a hump on my chest and wouldn't resolve itself so my bs decided to remove it to be sure! 2013 the cancer returned in the same breast DCIS  ( milk ducts) and I had a mastectomy, chemotherapy  and I'm now on femara - side effects for both the same , hot flushes. Both cancers oestrogen positive. Due to the radiation in 2004 I as limited to what reconstruction I could have. In 2004 I couldn't put anything on my breast until the radiation was completed and there was no heart protection either . I cried with the pain and bleeding . Scars are still there now. I ended up with atrial fibrillation as a result. I had a TRAM flap ( stomach) reconstruction was didn't turn out very well . I had 2 choices - that or lat Dorsey flap ( my back muscle ) my skin was so tight from the radiation and the muscle removed during mastectomy so implants weren't an option. I've also had a Caesarian and numerous operations using my tummy but the tram flap was still a  viable site.  The best advice I can give you is to choose the best plastic surgeon you can find , do lots of research . Wishing you the very best of luck with your choice. Good hunting xxx 

Just read back your blogs. They can do other flap reconstructions as you have been told...and can sometimes put an implant behind to make a little bigger if the flap is small. I think this can be done after radiation as the skin is often replaced. Your plastic surgeon would be the one who knows what is possible.  You can though have a mastectomy now and if you cange your mind later can still have the reconstruction, as long as health is okay...being 60 is no barrier...you may still be living another 30 years, something to ponder. Kath x

Are you not a candidate fr a tissye expander reconstruction?