Radiation and Tissue Expanders
Comments
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I've been looking for a post topic with just this content and figured I'd make one myself. I have TE and I'm getting ready to start radiation next week . I got fully expanded before starting. Please post your experience whether positive or negative, but I'd really like to see more positive. Advice would help. Sometimes it feels like only those with negative experiences post, so I'd like to hear both. Thank you for the encouragement!
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Hi Addison- I had a BMX with TE's, then rads after chemo. Had 3 opinions from RO's and I guess the new way of thinking is that rads after a BMX make sense in some cases, so I did it.
The RO and the PS decided on a saline volume for my TE and then I stopped my fills until radiation was over. Waited about a month after rads to resume the TE fills.
I gave myself a two month break in fills this past fall because I had a prophalactic hysterectomy. Resumed the fills in January and I'm almost done. Scheduled my exchange surgery yesterday for June 12th. My PS is very conservative (will only fill 20cc each fill, twice a week, wants to wait three months after fills for surgery, etc). My TE's look really good. There is no visible evidence of rads, and no longer any color distinction from the rads side to the non rads side. Definitely looking forward to the exchange, as this has been a long road! But, I've done everything super aggressive towards treatment, and am not rushing reconstruction, as I want as few complications as possible. -
So it sounds like you continuted to fill even the radiatied side after your raditiation was complete? I was under the impression that the radiated side needed to be complete before starting. It's so intesresting to hear how different groups of doctors do things. Your information is encouraging!
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I'm struggling with this decision too. I had a 1.7 cm Grade 1 tumor, oncotype 4, but 1 micromet was found at SNB (.7 mm) and then at BMX ( I had previous lumpectomy and re-excision that couldn't fully clear an area with DCIS) ALND they found one more at 5 mm. I had wide margins and was able to have a nipple sparing BMX with tissue expanders. RO initially said no rads with the micromet, but when the other one was found at BMX he said it was still a gray area but nevertheless came down on the side of recommending rads. I got 2 more opinions and they both could not definitively recommend yes or no. My PS said that I should expand as much beforehand if I do rads. There is a possibility also that I would eventually need a lat dorsi flap on the rad side.
I am really conflicted. It seems that more data has come out recently supporting rads for mastectomy. But I am worried about heart/ lung issues too. I also have a really hard time thinking about going through yet another surgery, and a tough one at that. I really would like to have an uncomplicated implant exchange. But I want to do what's best for my health. -
Addison- yes, they filled both to an agreed upon point, then I resumed the fills after radiation.
11Momto3- it is such a touch decision, I know. Maybe get one or two more opinions? From what I've read lately, radiation does seem to benefit even after a BMX. But, of course, there are others issues like you've mentioned. My radiation was on my right side.
One of my RO opinions answered my concerns about damage/ future cancers very thoughtfully and put it in perspective for me. He said that I wasn't wrong if I refused radiation, but, he couldn't tell me that I was right, either. And, "let's treat the cancer that you do have, now" -
I had all my fills prior to radiation..when I had surgery he had already filled them with 400cc...
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I am half way through radiation. I had my TEs filly expanded prior to starting rads. So far it's going fine, but am nervous about the exchange to implants and hoping it is sucessful. My PS wants to wait at least 3-6 months post radiation to do the exchange. I would love to hear from people who have had sucess with this prcocess. Thanks for starting this thread addison, I too have been looking for information about it.
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I had TE during rads.
it went fine. used miaderm lotion-almost 3 tubes for 25 zaps. no signs of rads now. arm pit gott little redtoward end. I got tired.
It saved my skin big time for my diep sx. My RO was really impressed with my skin after, as was my doc for diep. I also only use coconut oil as my moisterizer
my arm was tight when I went into rads. thought I had gotten my range of motion back. wished like hell I had a xanax on board during my planning session. I had my arm up over my head for whole hour that first day. They had to do extra measurements due to my TE. I was on that table whole hour. it was agonizing. my modified radical mastectomy probably had something to do with that pain
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Hi everyone! I'm kelly from Alabama and have not been on the discussion boards in a while. This tells you I have been getting back to my busy life and some normal activities! I am in my last stage of radiation. I have 2 more days of regular all breast radiation and 7 more of concentrated (only on my scar) treatments. I had a BMX and TE placed in Nov. My PS filled my TEs completely first and I started radiation in Jan. My experience has been really good. I have just now began to get a little red and tired at the very end. My radiologist said that when they start the boost next week I should begin to clear up. I was very scared about my skin and TEs, but I feel like everything is working out fine. My PS will take a look right after I am finished and decide when to do the exchange. He said, probably just wait a month!! Real excited. Hopefully this helps you addisonse!
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It's good to hear it can work out well. :-)
Momto3boys, I think I will get another opinion. I was at the plastic surgeons office getting a fill today and the nurse pointed me in the direction of an RO that a patient who had been there before me today is using. Apparently this patient was really against radiation, but feels comfortable moving forward with this RO. Did all 3 RO's recommend rads for you? Sometimes it seems the more opinions I seek the more confused I get... -
I went through radiation with filled tissue expanders without any problems. Had exchange surgery 6 months later without any complications.
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11momto3- yes, all three recommended rads. We were surprised. My PS and my MO both said I didn't needs rads (BMX, clean margins, no nodal involvement, no LVI). But the RO's felt that since my tumor was over 4 cm, I would benefit from radiation by preventing a local recurrence. I believe they said it would bring my local recurrence rate from 15% to less than 5%. They all said that the incisional scar is the most likely place for a recurrence, so they did that, and I think my chest wall.
My PS was adamant about waiting at least six months after rads for the exchange (it will actually be 13 months now, since I threw the hysterectomy in there).
In the beginning, it was hard for me to wrap my head around Oncotype score of 16 and getting rads, but, finally clicked that Oncotype is for distant recurrence (mets). Radiation is for local recurrence. -
Things to keep in mind, that I learned thru rads: you need to eat considerably more than you normally do, preferably proteins. I found rads to be more tiring than chemo, almost from the first few days, and started feeling dizzy and very tired and lost a few pounds. My RO said that during rads, your body is working overtime to repair cell damage and needs more nutrition.
I used only what they gave me (their instructions!) to put on my chest. It was Aquaphor, and after 7 weeks of radiation, I only had a slight pinkness to my rads side. They also supplied deodorant to use. Drink lots of water, but, not too much. At one point, I was drinking so much water, and felt like crap- well, I was drinking about twice the recommended amount for my weight and my electrolytes were way off. I hate Gatorade, etc...but, started drinking it, and pouring it in my water bottle (half and half).
Eat a lot of lean protein! -
Hi Sarah! This is Kelly from baby center...I'm also getting ready to start rads next week. My TE's have been filled 4 times so far. Initally my PS said if I wanted my breasts bigger I'd have to do that lat flap surgery I was telling you about. Now (after much discussion) he says if my skin looks ok after radiation he will very slowly fill up my TE's- about 30 cc's a week. If my skin gets messed up I will need to make the choice between having to stay the size I am now (about a full B cup) and have the exchange after I've healed from rads or go through with the lat flap if I want them bigger.
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is your cancer on the left side? I think you're really smart to think all of this out. Whenever my doctors are "maybe", I know there's a reason they are partially thinking yes. The insurance that radiation gives against localized recurrance is very reassuring.
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Kelly- my advice is straight to implants and get the full B instead of the C. Lat flap is a HUGE surgery. I talked to several of the nurses that were taking care of me in labor and delivery and they were all aware of the surgery and said to avoid it at all cost. it's not worth it to have bigger boobs.
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I had a left mastectomy with SNB in February 2012. A TE was placed at the time which was then filled to capacity before I started 25 rads. I also had chemo before rads. I am getting a DIEP flap surgery done in May. My PS wanted to wait almost a year to give my skin and tissues time to settle after rads. There is some visible contracture around the TE after rads, but the PS feels I'm good to go for surgery, and did not do more fills. I wanted an implant, but PS is not comfortable doing that any more, and feels that DIEP is the way to go.
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I had a bmx with TE in July and I will be finished with rads tomorrow. The last 2 weeks I started having pain in my TE and I feel like it is because the tissue has shrunked and is squeezing the TE. Im not sure if that is really what has happened. I will be seeing my ps next week and will let you know if he says there is any damage. Other than that I havent had any problems with the TE's during radiation. Hugs
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Hi this is my first time posting but after reading I thought I would share my experience. I was diagnosed with breast cancer in my right breast they found it in my yearly Mammo, after doing the biopsy they said I needed to do the surgery to go in and check things out. After that surgery my surgeon said it was getting to aggressive so I would need the Mastectomy, It was all happening so fast! I opted for the bilateral Mastectomy because mentally I thought I couldn't do this again. I had the surgery in November of 2012. They started the TE shortly after I went weekly for the fills. I found out that the cancer was .04 to the chest walls so they recommended 28 days of radiation ugh right? I just finished a week ago (after hearing the horror stories of what the radiation could do to the TE's I thought I was out of the woods). Well this past Sunday I passed out in my apartment and my daughter found me. I was brought to the ER and was admitted now I have cellulitis in the breast again. ( I had it before right before Christmas and was hospitalized he put me on IV antibiotics and it seemed so much better and I went home with antibiotics) my PS has scheduled surgery for tomorrow morning, in a way I can't wait the breast is soooo swollen and painful I look forward to it being removed and I can finally have some relief. It is an hour surgery which I will have one drain for a week. Then in 6 months I will have the flap surgery then start the TE all over again. In the meantime I had scheduled surgery to have the good breast permanent surgery in April. This will give me time to decide if I want to go ahead and start the TE again or if I like having it without. Hope this helps anyone with questions about it. It's nice to hear every ones stories!
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Thanks Sarah! I'm leaning toward just doing the exchange. I can't imagine all of the extra pain, doctor's visits, risks, etc for less than a full cup size. Plus, I am so ready to get these expanders out.
Squirt, thanks for sharing your experience! I have never even heard of cellulitis before! Sorry you had to go through that twice!
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Hi ladies Im still having pain in my right breast from radiation I guess and pain in my left breast from the last fill. Ugh. Definitely be glad when they are out. lol. Hope everyone is doing well. Hugs
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First radiation thread for me.
Last chemo (Taxol #4 after 4 A/C~~all dose dense)
umx, axillary dissection, immediate reconstruction T/E March 5
Got a call today booking CT mapping next week (March 27) with rads to start the following week.
I am really concerned as it seems really soon to me though RO knows exactly my surgery date. I see PS Wed. and of course will be looking for input and also I see the BS a week from today though I honestly don't see her providing much input as I think it will be more the PS and RO. Have any of you started rads so soon after surgery? This is/was a fast growing aggresive cancer as shown by the pathology in Sep. after lumpectomy and SNB and I gather no one wants too long between chemo and rads even though it was agree no problem for me to have the surgery pre rads. I am not a candidate for any sort of flap procedure the T/E is my only chance at reconstruction.
Marian
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Hi Ladies! I've been reading through some of the posts, but so far have not found anyone to comment on how to deal with lopsided TEs. I am more than half-way through chemo and should start rads in May. We will have to overexpand the left side, which is the radiation side, and luckily can leave the righty as is for now (although not at the full size I will be at exchange time). Anyway, my big concern right now is timing and how to deal with the two different sizes for months. I have to have lefty overexpanded before May 9th - in one or possibly two more visits. Is my best bet to buy one of those small breast forms to insert into a cami so as to sheild the awkwardness? Do any of you have recommendations for sites to buy from? There are so many on the internet, it is overwhelming.
Many thank,
skimommi
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Hi Marian and welcome. I believe for me they said it was normal to start radiation about 4 weeks after chemo or maybe it was within 4 weeks. Anyway my urgery was before chemo so I cant help with that.
Hey Skimommi and welcome. I had my ps deflate my non cancer side and then had another CT planning around it. They didnt deflate it much and I didnt really look lopsided. Ask your RO if you can just have a small amount removed and not the whole thing.
Hugs to all
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Melmcbee I won't actually have to have the non-radiated side reduced at all. It is just the perfect size right now to not interfere. However, we are talking about putting like 80-100 more cc's in the radiated side. I was needing to go with about another 80 on both to be done, but won't have another fill on the right since they would just have to take it back down. How different do you think 80 cc's will appear?
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Im not sure but I felt like I could tell with each fill which was usually 60 cc except the last fill was 120 and I wont do that much again. lol Still hurting. Good luck and healing hugs
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I'm so glad to read all the comments. I am 3 weeks out from BMX with TE. I had an issue with my skin on my left side where the cancer was so my PS has me on 24/4 oxygen to help the skin heal. He only filled the left side 50cc and the right 150cc. My skin is looking good and next tuesday I will have my first fill on the left to try and even it out. I too will be having radiation and want to know how long everyone waited to start after surgery? And I am so confused on wheter they deflate the side they will radiate...both sides?? I meet with my RO tomorrow and hope to get some answers. If anyone can give me tips on what to ask please let me know! I too was told implants after RAD is very difficult and I do not have enough skin to do a FLAP/TRAM nor do I have a desire to do so! I would be perfectly fine with a B cup and just have the RAD and Exchange! And did most of you get your TE filled all the way before starting RADS?? Thanks everyone
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CLYDAY-
I had my bmx on July 25th and for some reason had a lot of issues with my incisions healing on both sides, frusterating I know.
I had my TEs filled all the way during chemo before radiation, went through 33 rad tx and finished march 16th. I will be having my exchange surgery on Aug 1.
So far so good, there is a little more tightness on the side that had radiation, but it's slight. visually I can't really see a difference between both sides. My skin got red and irritated, especially on the armpit, but has healed up nicely.
My PS thinks things look good and hopefully everything will go well with the exchange and the implants, I am like you have have no interest in have a tram/flap....no more surgery please!
Good luck! I have heard that implant with rads can be challenging, but there are also women who have had success, hopefully we will be in that category
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Clyday,
I had BMX with expanders and they didn't deflate either side before radiation.
I had all of my fills before radiation began, over a four week period after the BMX. They can start to inflate you with surgical drains still in. Mine were in for three weeks! I was inflated to about a B. Radiation started two weeks after the fills were complete, so six weeks after surgery. They told me rads should start no more than six weeks after surgery.
I have one week of rads left (28 sessions) and so far I am just a bit pink. I use the special lotion they gave me three times a day. -
Did anyone's PS insist on TE placed only after radiation was completed? It seems to make much more sense to place at bmx and to avoid a separate surgery just for expanders.
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