SEPTEMBER 2009 RADS

Betsy...It has been a month ago today when I finished rads and I am still not quite healed all of the way. I still have a spot on the center of my chest that is about an inch wide and 4 inches long of very burned skin. It is just taking a very long time to heal, but it is getting smaller. Kind of like a puddle when it dries up.

I got some very upsetting news today. I have an expander and it seem to do well during rads until a week ago I noticed a small 'hole' along my mastectomy scar in the front part of my breast that was dark in color. I asked the radiologist what it was and he didn't know for sure. Then a few days ago, it started draining a yellowish fluid out of it non stop. I went back to the radiologist yesterday and he said he had never seen anything like it and he thought maybe it was a hematoma. He set me up with an appointment with my PS to find out what it is. I went today and he said that my expander is pushing its way out and the dark color is the actual expander itself! So, now it is contaminated, and that means I won't be able to get my implants because of the contamination. He said I could do the flap surgery or just have the expander taken out and have nothing there. I am upset because I didn't want to have to have the flap surgery. And I am upset that I have had to wear this very uncomfortable expander for 9 months for nothing. I have to make up my mind pretty quickly because of the risk of getting infection. Thanks for letting me vent....

Christy..how very freaking frustrating!   But..you are not ALONE..my sis in law had all kinds of trouble with reconstruction.  Since I had a lumpectomy..I'm not sure exactly what you are going through..but I do know that my sis in law had several "small" surgeries because they cut too close to the chest wall during her masectomy..then she had the reconstruction.  She got "gummies"?   Seems to like them...I think they were a type of "trial"..maybe you should ask about them....I have to admit I'm a little ignorant about the recon stuff but I know she went through quite a bit until it was FINALLY right...It took over a year from masectomy to finally getting her "fips" on...and she didn't have to have chemo or rads....so....I'm kinda of rambling here but I do know that it was very very hard on her but finally she is OK now...not sure if that helps..

Christy--that is really lousy but I have a question--why cant you have the expander taken out--go on antibiotics -let everything heal and in 6 months have the implant-- my girlfriend had part of her expander break through the skin and that is what she will do--maybe you should get a second opinion--I know nothing can be done whileyou have an infection and that has to be cleared up but sounds like there should be another alternative to nothing or a flap-- I had bilateral implants at the time of surgery--the one on the breast cancer side never looked right--it was not inflated completely and I have a corner of the implant ( a point actually) right under my skin that i keep pushing in--Lovely--I am worried that will come through the skin someday soon too --I see my PS in 2 weeks and find out what to do about that!! hope you get more information--Laua

Christy - I am so sorry this has happened to you. BUT - on Monday, i went to the hospital to visit a BC friend who I met through treatment. She had her expanders, must have gotten contaminated at some point, but they pushed ahead, treated with antibiotics and did the exchange surgery anyway (I am not too good with the technology so I hope I am explaining this correctly). Anyway, the infection NEVER went away - she battled for MONTHS after the implant was in, and finally it became a serious enough staph infection that she had to have surgery AGAIN to take OUT the implant and was in the hospital for 5 days on IV antibiotics fighting the STAPH infection.

So while your situation is very frustrating, and I am not taking anything away from your disappointment, I am GLAD they are being proactive and careful so you do not end up going even further in a bad direction like this woman did. She really didn't look so good when I saw her - and that was the day she was being discharged. She had  a friend there who was picking her up and she said that in her observation, the infection had been dragging her energy level down for many months and she just could not move forward.

SO I am hoping that for you, they do whatever they need to do so that you can recover fully and go forward in life healthy and strong.

(Sorry to go on so long in this post. But I just saw this woman a few days ago and it is fresh in my mind.)
Wishing you the best -

Amy

Betsy--I am struggling not to gain weight--especially since starting on the Arimidex--I just dont want to gain  and it is so hard cause we do a lot of social eating and love pizza and pasta--and then I got my cholesterol backand it was really much higher than ever--never had a cholesterol problem--so i know how you feel--chemo rads surgery--now having to watch what we eat--hopefully we can at least have a glass of wine with our lettuce!!!--how exciting a haircut--I am not even near that it has been 13 and 1/2 weeks and although the hair is covering my head it is very very short 1/4--1/2 inch maybe -- you will have to post a new picture soon!!

have a good weekend everyone and stay strong!!Laura 

Titan - Rather than wondering, why not call the BS and ask about the letter ? If it's simply protocol to cover your next visit, then fine but if there is something there (and frankly, I'm not certain how anything could survive so soon after rads and stuff) then maybe a followup in 3 months makes sense. Just my two cents.

Titan--I agree with MTG and kawee--I am a bit of a control freak too--what do they  mean "an area ...." jusst get some peace of mind !!  Hve fun at the OSU game--go buckeyes(if that is who you cheer for ) I am an original ohioan too( cleveland no less!) but now in California still i have my ties to Ohio--

Ooh, the caramels do sound great, esp the lavendar infusion, kind of sweet, floral with the fleur de sel to cutthe sweetness and add dimension. WOW ! Very sophisticated and sound amazing !

My head is spinning trying to decide on what to do...I have went over each option and researched them all online. I think that I may get a GAP (which my PS doesn't do) or a  TRAM (or preferably a DIEP to which my PS doesn't do either) flap surgery. I don't look forward AT ALL to another surgery, especially an 8 hour, 4 night stay in the hospital, 6 weeks off of work. But if want a breast there, that is what I will have to do. Otherwise, I would just have the expander removed and then do nothing.

For the past few days I have been having soreness in the nipple.  Not swelling, not redness, not shooting pains, just an underneath soreness in the duct work.  Remember I am about 4 weeks out of rads and my surgery site was close to the nipple area.  To me it doesn't seem to be related to the rads (although the nip was in the boost area.)  I am thinking that it might finally be my nerves healing underneath as the feeling does seem to be coming back.  Has this happened to some of you, with this kind of after-the-fact nipple soreness?  And yes, I will ask a doc, but not til Thurs.  Thought I'd ask here for the time being.

The part about the rads that I really hated was the amount of lung that had to take collateral damage.  One question you might ask could be about how much of your lung will get zapped in either position.

If they removed 9 nodes, with 8 being clear, that might be why the one RadOnc thinks the supraclavicular nodes don't need to be irradiated  The node biopsies are supposedly pretty accurate, so ask the other one WHY he wants to include those.

unklezwifeo...I too, am Triple Neg. but no node involvement; however, I had dose dense chem, 4 ac and 4 taxol plus 33 rads (7 of which were boosts to the tumor bed)..so I can't really help you except to say that I would get the strongest rads available...rads, seriously, are a piece of cake compared to chemo...I think most people would say the same..yes..there is burnt skin and some pain..but...it is totally, totally doable......not sure if I helped any...but we are here to be with you with whatever you decide.hugs to YOU!

My tumor was in the 6 o'clock position.  Rads were hitting about 20% of my right lung UNTIL I made a fuss about so much getting zapped.  RadOnc put in some "blocks" and I ended up with 12-13% of the lung getting exposure.  Funny thing is, both my husband and I remember that in the opening schpiel the RadOnc gave us, he said a small bit of lung couldn't be avoided, like 3%.  Well, turned out to be a lot more.  Treatments may have come a long way, but they have a long way to go if they have to damage major organs of the body, IMO.

I asked about lying face down for Rads, but a) my place didn't have the set up to even do it; and b) my old school RadOnc felt that the results of that method were not as effective.  Since my tumor was not at all near the chest wall, lying prone seemed like it would be more possible to avoid getting the lung in the rads field.

elimar - I was also told by my rad onc that I would have a small area of scarring on my lungs from the radiation, I had a very small area of DCIS in the 7o'clock position on my left side, but the whole left side is being radiated.  I was told that it is such a small area on the lung that I would never notice it. How did you know that more of the lung was being radiated than they originally predicted?