Topic: Multiple sclerosis and breast reconstruction

Forum: Breast Reconstruction — Talk with others facing decisions about whether or not to have breast reconstruction, and if so, what type and when.

Posted on: Dec 26, 2013 09:42PM

Posted on: Dec 26, 2013 09:42PM

cait1986 wrote:

Hi Ladies,

This is my first time posting.  I had surgery for Stage 1C ovarian cancer followed by chemotherapy two years ago, and shortly afterwards I found out I have a BRCA 1 mutation.  I want to schedule a prophylactic bilateral mastectomy this summer.  Ideally, I would like to have DIEP reconstruction.  A complicating factor for me is that I also have multiple sclerosis.  I have had appointments with three plastic surgeons in NYC.  One PS told me that he would recommend implants and he could not see how any PS would recommend otherwise because I have MS; another PS  talked to me about a TRAM that would only take small pieces of muscle, which I am not interested in due to the muscle weakness it would cause; and the third PS explained the procedure very well and gave me a thorough evaluation, although he did mention the surgery being done in stages (3 surgeries), which I did not expect.  I am concerned about how a DIEP or implants would affect my MS in the immediate and distant future.  The implants come with a lot of risks - infections, capsular contracture, need for replacement.  I don't know if it is the best choice for someone with an autoimmune disease.  I think the DIEP would be best in the long run, but because of the complexity and length of the surgery, may have a negative impact on the course of my MS.  So - I am asking if anyone with MS had breast reconstruction, and, if you did, what method you chose?  Was it recent?  Are you happy with your choice?    Do you have any suggestion for me as I am trying to make my decision?  

Any insights would be appreciated, ladies.  I am having the prophylactic mastectomy because I do not want to have another cancer, but I REALLY do not want to have a multiple sclerosis exacerbation.  I had a bad one in 2001 and it took me almost two years to get back to work and on track with my life again.

I have read a lot of these posts and everyone seems very supportive and empathetic, so I hope some women will share thoughts and ideas.  

Thank you.

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Dec 26, 2013 10:41PM blessings2011 wrote:

Hi, cait1986, and welcome to the forum. Sorry you find yourself here, but this is an awesome bunch of women with wonderful support.

I can't answer your question, as I don't have MS, but I did want to ask a few other questions...

My SIL has MS, so I am familiar with her daily life. She has great days and she has challenging days. I know the toll that surgery takes on her, but hers have been primarily orthopedic surgeries.

The DIEP is a very long, complicated, time-consuming surgery.  Yes, it is done in stages, meaning that you would be under general anesthesia numerous times. The ladies who have had it done, though, are usually very satisfied. Would being under anesthesia that long, and being somewhat more disabled by the recuperation process have a negative effect on your MS? In other words, would it cause a setback? Do a search on DIEP procedures to see how much down time this involves for those without MS.

I have several auto-immune disorders and I have implants. I got saline because that's all my PS does. The shells, however, are silicone. You are right about the risks... I know that there are many women who have had issues, but I haven't had any of those you mentioned, and my PS said to not even worry about replacing them. And having saline means that I don't need regular MRIs to check on them.

There is another type of reconstruction using autologous fat transfer and something called a BRAVA machine. This uses only your own body's natural fat, and there are ladies here who have used it. I think the drawbacks are not having enough natural fat, or the fat transfers not taking. I also think there are size limitations for fat grafting without implants - like a small B cup. Here is more information: 

Finally, what does your MS doctor say about what these procedures would mean to your condition?

Sorry I can't be of more help.... you can also do a search on topics like BRCA, prophylactic mastectomy, DIEP, BRAVA, auto-immune, and so forth.

Wishing you the best in whatever you choose... please keep us posted as you gather information!

Dx 9/15/2011, IDC, Left, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 12/4/2011 Lymph node removal; Lymph node removal (Left); Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Surgery 8/21/2012 Reconstruction (Left); Reconstruction (Right) Hormonal Therapy 9/4/2012 Arimidex (anastrozole) Hormonal Therapy 10/21/2013 Femara (letrozole) Hormonal Therapy 10/1/2021 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx IDC: Papillary, Left, <1, Stage IA, Grade 1, ER+/PR+, HER2-
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Jan 15, 2014 10:12AM hamm512 wrote:

I am BRCA1 positive and have MS as well. I am in the process(doctor visits-MRI) of having a Prophylactic Mastectomy. I have thought long and hard on this issue.  I was told that I would have to go the implant route due to the MS.  The least amount of surgery the better for my MS. The recover time is longer and the type surgery for reconstruction you desire is more invasive. I have had minor surgeries and have done fine but my MS does flare up. I know that when I have an illness where the healing time is long, I have had an exacerbation. I would prefer to DIEP reconstruction but will not do it. I was on Gilenya when was very ill and had two exacerbations.  Maybe the medication was not working well for me or it was just MS being MS. I am now on Tecfidera and I hope it will help prevent an exacerbation with my surgery. Everyone is different but I know what disabilities where left behind with my last two exacerbations. I am still trying to get where I was before them. My main goal is not to get cancer like my female relatives. It is bad enough to have MS so I want to avoid cancer if possible. So, I will do the surgery that will give me the best quality of life after.

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Jan 21, 2014 11:29AM cait1986 wrote:

Thank you for replying, Blessings 2011 and hamm512.  The decisions we have to make!!!

hamm512 - I am seriously considering implants for the same reasons.  I saw a PS that does Direct to Implant, and this sounds like a good option.  However, I have yet to discuss this (or using expanders) with my neurologist.  Also, the PS only does Direct to Implant with silicone implants, and I'm wondering if saline might be better for someone with autoimmune problems.  Have you decided which method you will use for implantation and whether you will use saline or silicone?

I wish you well on your journey to (drastically) reduce your chance of cancer!



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May 17, 2014 01:01PM emilykp wrote:

I know this is months later.  However, I have a mild case of MS (for almost two decades) and after bilateral mastectomies and tissue expanders placed, I have had a terrible MS Flareup.  I am going to back out of the reconstruction process.  My advice to anyone with confirmed autoimmune disease: avoid foreign bodies in your body.  I'm highly suspicious it caused my flareup after so many years.

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May 20, 2014 07:02AM 0809 wrote:

I too have MS (R&R relatively mild) I was diagnosed with breast cancer last July (2013). Will be deciding soon what to do for reconstruction. I have already had a bilateral mastectomy (last Aug) but postponed reconstruction. Too much happening physcially and psychologically. emilykp your post is in agreement with my thinking. For me an MS flare and recovery is as threatening as cancer. Been there too and recovery is a long process.  I have lived all these months "unconstructed" with just loose skin. (Not easy to look at.) Have gotten use to being flat. When I am healed from radiation I will then have a decision to make about reconstruction. Right now I am fairly positive that I will not reconstruct. I have seen beautiful reconstruction photos, but for me, I think no reconstruction is my course of action. What will you do? 

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Oct 4, 2015 10:38PM AnneeS wrote:

I was recently diagnosed with DCIS breast cancer, Stage 0. I was seriously considering a bilateral mastectomy with a LAT FLAP reconstruction, but am reconsidering after seeing this forum. I am scheduled for surgery on Oct. 20, so time is closing in on me! I am now thinking that maybe I should simply go with a lumpectomy with perhaps a sentinal lymph node removal, followed by radiation. I had wanted to never have to worry about cancer again, but now worry about an MS exacerbation following a major surgery. I also take Copaxone shots 3x weekly. I need to see if Copaxone can interfere with these procedures.

Goo luck to all of you! God bless!

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Oct 5, 2015 04:21PM farmerlucy wrote:

My friend had a unimx, healed, had the TE's put in, healed and then had the exchange. Her MS is well controlled and she had no issues during / after the surgeries

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/20/2012 Prophylactic mastectomy; Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/10/2012 Lymph node removal Surgery 7/21/2012 Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant Hormonal Therapy 4/9/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/13/2015
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Oct 5, 2015 05:57PM chef127 wrote:

I have had 4 surgeries in the last four years and never experienced a flair of my MS due to surgery.

When I was considering a Mx the plastic surgeon would not do any flap reconstruction because removing any muscle could through off my balance even more. Not good.

I went with a Lumpectomy and reduction on the other side. I'm really pleased with my decision.

I hope you make the right choice..for YOU.

good luck

Dx 8/2011, IDC, Left, 4cm, Stage IIIB, Grade 2, 1/8 nodes, ER+/PR+, HER2- Radiation Therapy 1/2/2012 Breast

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