Team ILC Warriors
Comments
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SoCalMom71 - Glad to hear that you're home and managing your pain. And I assume that the other breast was clear on MRI, correct? Sorry you had to pay out of pocket for the MRI, but it obviously changed the surgery plan and you'll move forward without continuing to wonder about the spared side. That's great news!
Some oncologists do the Oncotype DX genomic testing automatically, some don't. Mine always uses Adjuvent, which is a statistical model which uses information from pathology along with tumor size, etc. At my request she seemed happy to also order Oncotype DX. There are other factors and models that can be used. My ILC tumor was small and I had a negative sentinel node biopsy. The Adjuvent profile did not suggest that chemo would add much protection, but my Oncotype score was right on the border. I chose to pass on chemo and I am on hormone therapy for at least 5 years.
I honestly don't know how things will be different for you with the larger tumor size. Did you mean to ask how your treatment might change if the final path on the sentinel node comes out positive (you wrote negative)? You will find that approaches are different from region to region and even from oncologist to oncologist. I believe the current thinking is that even if the sentinel node shows involvement there is no need to do a drastic node dissection. I could be wrong on that, but that is what I recall from my own surgery. It obviously might change the treatment plan, however.
The oncologist typically won't see you until all the final path info is available. You will discuss whether or not chemo and/or hormone therapy are appropriate depending on the specifics.
Please take good care of yourself and stay ahead of the pain.
Best wishes!
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Thanks Tina for valuable info. yes, the other breast was cleared in MRI.
What i meant by negative sentinel is that looking at the size of my tumor the surgeon was expecting some node involvement and thus he had said that most likely there will be chemo followed by Rads. However, now that sentinel came negative, how will it change. Thanks to you and lojo etc, i see that if nodes are negative, oncotype testing makes sense. if my oncologist wants to start chemo directly, i might will have to push for the testing, You mentioned that sentinel node was negative for you, but your signature shows that lymph nodes were removed. So the surgeons removed lymph nodes even when the tests were negative?
I also have one more question. A lot of users here have mentioned that they placed expanders right at the time of mastectomy. I asked about it to my surgeon but he said that this wont be an option in my case since i have to do rads which will shrink the skin. did you also go through rads?
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SoCalMom71 - Again, I don't know how the large tumor size and grade play into the plan. There is a lot of good info on the non-discussion board side of BCO:
Fortunately, both the nuclear and blue dye localizations pointed to the same node so my BS was comfortable just removing the one sentinel node. The BCO signature says 0/1 lymph nodes, the default is plural so it might look like multiple, but I only had the one removed.
As I mentioned above, I did not have radiation so that did not affect my reconstruction. I had tissue expanders placed at the same time as my MX.
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SoCal Mom - its true you cannot have expanders with Rads BUT you can choose to have immediate reconstruction done now, which always gives much better results than delayed reconstruction.......and makes the whole process a lot less traumatic. I speak as someone who HATES being lop sided and only having one breast, every morning when I sit up in bed and feel the lop sidedness I feel my spirits plummet and I am nearly two years along. Only you know how you are likely to feel about your body without a breast but push for what you want. Some doctors tell you that rads cause problems in the reconstructed shape but thousands of women have rads after immediate reconstruction without problems. It is a LOT harder to get a successful reconstruction if the base tissue, muscles etc on your chest has been radiated as the tissue does not behave the same afterwards
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SoCalMom, my BS did not recommend tissue expanders during my surgery, either. So now I am looking at 2 more surgeries; one to place tissue expanders and he other for the exchange. S me days I wish the expanders were placed during mastectomy and some days I don't. I do believe the recovery from BMX was faster and less painful without them. I just wanted to get through treatment then worry about reconstruction. I asked my RO about what my skin will be like after radiation. He did suggest that I not wait too long after radiation. As my skin will handle reconstruction better before scar tissue settles in. I am going to have a few consults with PS this summer.
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Hi SoCalMom,
I also opted for no tissue expanders since there was a good chance I would need radiation. I'm not 100% certain if I want reconstruction at this point - I'm strongly leaning toward not (I don't think implants will be an option on my radiated side and I'm not keen on autologous flaps since they'd leave big scars and possibly reduced function at the donor site -- I don't have enough belly for a DIEP). Part of me wants to wait and see if the BRAVA/Fat transfer is safe and effective, since it seems much less invasive, but I haven't had too much trouble adjusting to flatness - it doesn't bother me emotionally beyond the general sadness of losing my real breasts - but I know it does for many. I'm just not sure I want to endure more surgery and the risk that comes with it. I wear prostheses some of the time, and even though I haven't gotten my fancy ones yet, the cheapo ones look pretty good and I really don't think anyone can tell.
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Lojo, that is pretty much where I am too.
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Good health and strength to all the women on these boards for International Women's Day and the ILC Warriors, in particular.
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I guess I am the lone person who did have tissue expanders during rads. My PS was very happy that my RO was okay with it after the fact. I had the good side deflated so the beam angle could get to the bad side appropriately. Although my skin fell off after rads, I healed well and 8 months later had DIEP reconstruction. All that is left to do is nipple tattooing. My PS did not want to try implants because of the increased risk of complications after rads but I wanted DIEP, anyway. i had plenty of tummy fat to donate,
Everyone was surprised that I had 2 axillary nodes show up positive in path. (1 inSNB). 0 -
I also had tissue expanders during radiation. Frankly, didn't know any better at the time and when my BS told me to get a plastic surgeon prior to the mastectomy, I did as directed. My reconstruction is a far cry from perfect, especially on the radiated side, but I can live with it.
Now, something slightly different. Yesterday, I finally went to see a dermatologist, after procrastinating for 3 years. Everything went fine, but I was told that I really should have my radiated breast examined every six months because there is a slight danger of skin cancer after radiation.
Has anybody else been told the same? My oncologist always asks me if I saw a dermatologist, but she never explained any possible radiation/ skin cancer connection despite my not seeing a dermatologist until now.
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Jeannie, why expanders for a DIEP? This is something I have been puzzled by a few times. I thought they used the stomach, including the skin. Does this mean that even for the DIEP, they have your pec muscles as a layer over the transplanted tissue?
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Momine, I am having DIEP on 5/5, no expanders, they will do the MX and use the fat from my belly to form my breasts. I am keeping my skin and nipples. There will be a small flap, they will take out breast tissue and put in the replacement. For me this was the way to go to still sort of look like me. At the Cleveland Clinic they no longer use expanders for implants, they have new technology but I am not sure of the process. I know if I had chosen implants I would have went there so not to have the expanders, its a all in one procedure. Good to know technology is moving forward and making things easier on women. In addition if over 60 at the clinic they do radiation for 30 minutes during the lumpectomy instead of the normal 6 weeks. I didn't qualify due to age but again things are getting better those that come after us.
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I also had expanders during radiation. It has been 4 years since permanent implants and I still feel like there is a foreign body on my chest and even occasional muscle spasms. I may just have them taken out someday.
I have not had a dermatologist look at my scars but my MO looks at them every time I have an appointment. Seeing a dermatologist every 6 months seems a little extreme since I would think you would notice changes in your skin. It would be good to be told of the risk and how to examine your skin.
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Lemon, thanks. I understand that you can avoid the expanders etc if doing a skin-sparing MX. What I can't understand is needing expanders (or saved skin) for a DIEP. I thought the belly skin would substitute. but I guess that is not the case.
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Danishgirl,
Frankly it never occurred to me to see a dermatologist every year, let alone every 6 months, that's why I am asking if anybody was told the same. Found it strange and unnecessary, too.
At the same time, I had to fight to get my tumor markers test.
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Antonia, nobody told me to see a dermo. However, I have thought it might not be a bad idea. Maybe not every 6 months, but annually. Of course, I have not actually gotten around to it yet. All doctored out.
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Momine- with a DIEP they usually do use your belly skin, but some can keep their skin and nipples if they want. They say it doesn't raise the risk. My BS said 80% of the time the nipples will live, 20% of the time they die, figured it is worth a try. She had to check my skin, especially the rads side, and I mean check up close and personal! Not sure if it has to do with age or not. On the DIEP thread I am learning a lot, but I think there is currently only 1 other besides me that saved her skin and nipples.
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Momine, there is a larger scar area if they use mostly tummy skin for the DIEP. I just had a "crop circle" of tummy skin on each boob, about 1 1/2", that was later used to make a nipple and the remaining part of the scar will be tattooed as an aerola.
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Hi Genny, I had neo adjuvant chemo fec and Taxol , grade 1 6cm. Mass shrunk 40 percent. I had a double mx . Did find out it was multi focal so I believe mastectomy is a better choice for lobular because scans just don't see it lurking. Also , it tends to have stray foci in the breast tissue.
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About the DIEP, I get it now, thanks! Of course, the skin on my belly is completely destroyed by stretch marks, so it would make some really strange-looking boobs
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Annette U, How do they go about deciding after chemo how advanced it is. I have to do some more reading on that and talk to my MO some more about it. She has said lumpectomy from the get go, and she says chances are the same for recurrence for lumpectomy vs mastectomy, which I know i have read somewhere. As of this moment I am Stage 2a, grade 1. I had MRI, bone scan, CT scan and sonogram. All showed nothing in my right breast but I keep reading these stories about women that have surgery before chemo and that's when they find out it's more involved than they thought. With neoadjuvent, once the cells are killed how do they determine all that with the lumpectomy and axillary node dissection? There is so much to learn.
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Lemon, did they tell you what the recovery will be like for,the DIEP? I had MX with no reconstruction, and will be staring rads soon. I haven't thought too much about reconstruction yet as this ordeal has been so overwhelming. But I am beginning to think about what will be best for me. I don' know if they will even do the tissue expanders if I have already had MX.
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smrlvr- Its good to see your name posting. They told me 6-8 weeks until normal activity. I work at home so I am not concerned. On the DIEP 2014 thread it seems most women are pretty good after 2-3 weeks, I don't mean healed but feeling good. Some of the best advice has come from Jeannie, she will see this and give you more info. She had it done and is very happy. I don't remember if hers was immediate or delayed. I really don't think they use expanders for DIEP but she will know more than me. Since the skin can come from your belly I would think that is what they make the flaps from and fill them. Sounds crazy and I could be wrong. ILC is too damn sneaky to take chances. Its been 14 months since my DX and I cant wait for them to be gone, I understand why you did what you did.
I went online and searched photos of DIEP and photos of implants. I like the look of the DIEP, its so natural and grows or shrinks with your weight. And they feel like your breasts warm and soft, that sold me. I also am thrilled to use my belly fat which is to me a added bonus after all we have been though. I know its so hard.
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For those of you contemplating DIEP, you need to go to the DIEP 2013 & DIEP 2014 to get lots of good first hand information!
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holeinone: My MO was VERY excited about the San Antonio Symposium's news regarding the findings of Zometa 2 x yearly for three years! In post menopausal women over 55 (I just turned 58),not only does it combat the bone loss caused by the AI, but also gives that 3% BC benefit (which he said is significant). I'll take any advantage I can get!!! Get my first dose with my Herceptin March 20th.
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Martie,
I am hoping my MO gets excited, but I will push for it. Also hoping the insurance will pay. Either way, I plan on getting it. We are the same age, I will turn 59 in May. Wow, you were young when you had bc the first time.
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Momine, just want to be clear that I had a delayed DIEP. I had BMX with immediate tissue expanders, all my treatment, then (15 months later) DIEP. Many women have BMX with immediate DIEP, no expanders needed. My PS wanted me to wait.
Smrlvr, have you met with a plastic surgeon at all? He/she can answer your questions best. I don't share your experience but I know many women do, probably on the DIEP 2014 thread. PSs can do amazing things these days!
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Can only speak for me own Diep...was using the walker for quite some time. Was out of work for at least eight weeks. It's a hard recovery but for those that it's successful, I'm sure worth it!
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Hi Galsal, nice to see you. Did you end up doing reconstruction after your DIEP? Was it not successful and if so did you do it again or did you go a different direction? Hope you don't mind all my questions.
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hi All,
sorry for the late reply.
thanks for all the advice on expanders and reconstruction. I am already past mastectomy, so i guess i need to wait till my PS tells me differently.
Had my post op and the drains were removed along with pain pump. I could not handle the pain meds and was very nauseated for two days, Anwyay, the path reports came back and negative sentinel nodes.! teh size of the tumor was also 2.8 x 2.6 and not 6cm as was reported by MRI.
Have an onco appointment next tues (thats the first one we could get). Any suggestions on what questions i should ask the oncologist or what to expect?
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