Reconstruction With IBC

kelleyb

The thinking on reconstruction after IBC has progressed beyond "don't do it, you're just going to recur". I see Dr. Cristofanilli at Thomas Jefferson in Philadelphia, he's one of the top experts on IBC in the world. He asked me to wait until I got through treatment before doing any reconstruction. I waited six months after rads and had a bilateral DIEP.  He was totally supportive of this decision, he told me that if my cancer came back odds were that it would try to get my bones, brain, liver or lungs, vs. where my breasts were. He's been very encouraging to live my life as if my cancer will never come back, but he gives me a brain MRI and PET scan once a year just to stay on top of things. If you want reconstruction then get it, if not, that's great, too!  I've met many, many women who are living a long time past their IBC diagnosis and putting it behind them. 

Meadow

thank you Kelley, and yes Akevia. my PS wanted to do a tram, and advised me that the possibility was strong for exactly what did happen.  I was opposed to the tram and he did what I wanted which was to try implants. I guess I am stubborn and should have known it would not work. He did his job in advising me. Thanks for listening

Akevia

Meadow is okay, I understand you wanted the less invasive procedure and you're not wrong for that. I wouldn't want the tram flap either that's  where they take your abdominal muscle also correct? I would do the DIEP flap when it's my time for that. Just don't try to fix and and it cause more problems move on to the flap. Goodluck !! 

Scwilly

I just wanted to say all your discussions are so helpful to me - we all seem to be going though simular yet unique journies. I was diagnosed with IBC in October 2013. After 4 AC & 12 taxols, I had my left UMX in April. I have just started radiation (done 3 out if 25) as I was a littled delayed with healing. I met with the plastic surgeon before my surgery to talk about options for surgery which helped with my decision not to have a bi-lateral. She plans to wait at least 9-12 months after surgery and radiation, so I expect this will be next Autumn (a.k.a The Fall I moved to SoCal from the UK in 2010) I'm not yet used to my one foob and am going to get fitted for a prothesis soon (just using soft pads from the mastectomy camis I got through my insurance) I dont know how I will feel next year but right now I cant imagine not getting reconstruction.

Best wishes to everyone

Sarah

Akevia

Hello Scwilly, glad to see you almost done with your treatments and your holding up pretty good. Happy you join our board and good luck with your reconstruction next year.

Meadow

Yes Scwilly welcome! We are glad to have you here! We learn from each other, encourage, cry ,laugh, all the good stuff! Hope you find information and friendship here too.

Scwilly

Thank you both for your kind words of welcome. Akevia how did your surgery go? I hope you are recovering well.

jessozzie

Hello friends, Kelleyb is right, reconstuction for IBC is not recommended,recur is likely with Ibc,

DiveCat

jessozzie, 

That is NOT what Kelleyb said at all! What she said is that there no longer is an automatic reaction of "no reconstruction ever" for IBC by many medical professionals, including hers who is very experienced in treating IBC.  

Akevia

Divecat thank you for that. 

Scwilly my schedule was reschedule because my surgeon wanted to see if the can shrink my tumor more. So I'm going through radiation now and hopefully this will do the job and I can go ahead and have surgery.

Scwilly

Best of luck with the radiation, sorry to have confused things. I've only done 4 sessions so far so its still new to me. I am trying hard not to imagine symptoms as I shouldn't be feeling any yet - but can't help feeling something. The worst part for me so far is the 3.5 hour round trip to the middle of LA and back each day.

Akevia

Scwilly you don't have things confused I was scheduled for surgery. I just had my 7th treatment today. My skin is darker and sensative and I'm starting to have trouble swallowing which they said will happen. Goodluck to you also with radiation.

Kicks

jessozzie - kelleyb did  not state that reconstruction is not recommemded with IBC.  But rather the opposite as medicine has progressed so far beyond that antiquated idea.  Many very knowledgeable/respected Drs today do not say recon is not to be done at all with IBCers.  My Drs said wait a year, some say 6mths and a few will say it might be OK at time of surgery.  I decided not to do recon but that had nothing to do with being afraid of a recurrance.  IBC, if it recurs, will usually be in distant metastisis, not in the breast.

Meadow

Scwilly, such a long drive for treatment....do you like to listen to books on cds? I live about 25 min out of the city, I love books on cd and the time goes so quickly. Your library will check them out for free, or you can get them at book stores of course. Right now I am listening to The Girl Who Kicked the Hornet's Nest, the 3rd book in The Girl with the Dragon Tattoo series. It is a tough "read", pretty violent at times, but the characters have me hooked and I have to see how it ends. I look forward to getting in the car just so I can listen to my book. Is that something you like too?

Akevia

Meadow that's a good idea. I drive an hour for work both ways, so I'm going to get a few audio books.

Scwilly

Thanks Meadow I had thought of heading to the bookstore and get some books on CD, but I hadn't thought of going to the library. I had been given Edge of Reason - the second Bridgett Jones book on CD - which I really enjoyed.

I have not been advised that reconstruction wouldn't be advisable for my dx of IBC. The only reason for any delay would be to allow my skin to heal after radiation. I discussed through all options with my PS and she indicated whilst implants can be done they can be more susceptible to failure. I try to think of each stage one step at a time. I'm not sure how I will fell after radiation has finished as I am triple negative and so will be 'on my own' after that - scary thought. I felt a little unsettled chemo ended as whilst it wasn't fun - it didn't feel right in those few weeks before surgery to not be having some form of treatment.

Meadow

Akevia you will love audio books. Scwilly I am triple neg too,  there is Triple Neg board I really like on here, "Calling All TNS" The ladies there post tons of research links, treatment options they have heard of and tests trials. They also are hilarious. And very very uplifting. Check it out if you haven't already.

Donna2012

scwilly,

If you look at my treatment info. below, it is almost 1 year ahead of yours & almost the same.  I had diep 6 mos after rads ended & am very happy I did.

Scwilly

Meadow - I'll check that board out thanks.  I checked out the humour board too the other day as I wanted to have some light thoughts about BC for a change - v funny too.

Donna - its so encouraging to here there is light at the end of the tunnel.  I'm keen to have reconstruction when the time comes. I have a good and v positive friend who works with my PS and so I feel I have a link there and someone who can help me too.

Going to radiation every day has been quite boring (mostly due to the drive) but my mood the other day was lifted as I had my handwriting analysed by one of the other patients. I'm not inclined to beleive in things like this but he was surprisingly accurate! Reminds me that we are all unique and there is always a way to find a smile.

amarantha

Returning to this thread after a couple of years, with a note of irony : about two months ago, I took an appointment, at my surgeon's recommendation to see a plasticien about reconstruction, this was two and a half years after the end of treatment for IBC; then a week later, having misgivings about the redness in the ex-breast I went back to the clinic for another look, and we found cancer in both breasts - it is indeed a local recurrence in the site of the ex-breast (left), plus a spread to the right breast, and a metastasis to the lymph node in the other side. I am dreadfully glad I did not have reconstruction done.

Bravenurse13

Had my bilateral mastectomy almost 3 weeks ago today, had my last tube taken out yesterday!

I decided to do reconstruction with expanders, all three of my doctors decided with myself, it was the right way to go.

Next week my PS decided he may start expanding, and radiation will start after week 6 after the surgery.

My pathology report was a promising one!  No residual cancer, and lymph nodes were all dried up from the chemo, Herceptin, and Arimedex!

All parties are pleased including myself!!!     I cannot wait until the radiation is over with!   This journey has been a long one...

Sherlocked

Congratulations, Bravenurse! Sounds very promising indeed. I had the same results 6 years ago and so far, so good! I don't even take any meds, other than the occasional otc.

I had reconstruction after IBC five years ago. For me, it was the absolutely correct decision, and helps me live my life with few thoughts of cancer at all. There is nothing wrong with being flat, nothing wrong with wearing prosthesis, nothing wrong with reconstruction. What is right for you, is right.

Bravenurse13

Thanks Sherlocked,

I try to be as positive as possible, after all; we all have lives to live without fear keeping us back...

BellaTassie15

Hi, I was diagnosed with IBC in July 2015. I had AC x 4 and was only able to tolerate 6 cycles of paclitaxol/ docetaxol due to peripheral neuropathy. (I have severe pain with walking now and balance problems with occasional falls, so I have no regrets that I did not persevere through it.) I developed mets in liver and bone whilst on this and was then told the lung nodule on diagnosis was a met after all. I am triple positive and had herceptin and Perjeta with this. I have been on these 2 drugs ever since and achieved "no evidence of active disease" in August 2016, which was great! I did not have surgery or radiotherapy.

Last month my annual breast ultrasound showed that the original tumour has regrown, and I have 2 new areas around it. I continue to have no new mets, which is great. My oncologist recommended mastectomy and commencing on Tamoxifen, whilst continuing on herceptin and Perjeta, as she said they were controlling the mets. I saw the surgeon yesterday who said I had to have a full mastectomy and would not be able to have a reconstruction due to needing post-op radiation. I queried whether I still had IBC because my breast looks nothing like it did when diagnosed 2 years ago, but she said it is always treated as the original cancer.

Since I have been living with Stage 4 for over 2 years and know my life expectancy is reduced, I am reluctant to have a mastectomy if I cannot have a reconstruction completed in a relatively short time. I asked for biopsies of the tumours to see if the ER/PR and HER2 status has changed, which would mean a treatment change. I also asked for a referral to a plastic surgeon for expert opinion on my reconstruction chances. I would prefer implants as the surgery is easier and completed in a shorter time, but also because I enjoy the gym and do not want to sacrifice muscle which would further reduce what exercise I could do.

I see above that the majority of those with IBC cannot have implants, which is disappointing. I will wait to see what the plastic surgeon says but am thinking that if I choose to forego radiation (due to being stage 4 where quality of life is the priority) I may be able to have implants? Does anyone here have any knowledge/experience/ thoughts they could share please?

Kicks

I was never told that I couldn't have an implant - just that I had to wait a year for recon. At the end of that year, I decided I was living as active a life as I had (and loving every day) so at the end of the year I was not about to subject my body to another surgery (recon) that could possibly limit my great QOL.

I did have a Modified Radical Mastectomy and 8 years since DX am still NED. But you said you did not have a mastectomy when DX - just A/C and Taxol?

BellaTassie15

Yes Kicks, no surgery or radiotherapy because I was Metastatic before the chemo was finished. They don't generally do this once the cancer has spread. However I now have a local recurrence (breast) and this is what they are recommending because I currently have no evidence of metastases in the rest of my body, which is good!