Topic: SEPTEMBER 2009 RADS

TITAN - Did they not stick needles in your cysts?  I used to get them all the time too.  I can't tell you how many needles I've had stuck in me and ultrasounds too.  Cysts have clear fluid in them so they would draw the fluid out with a needle, send it to the lab, just to check it out.  Once they drained it, no more cyst.  If they get blood, then it can be a tumor. 

I have had a couple of cyst that they did needle biopsy.  I had calcifications back in my mammos from 1993 even.  I knew they were there because they had to do extra films with the small square to get a good compression on that area.  They have been there ever since but apparently changed this year so that is why they did the stereotatic needle core biopsy and found the DCIS.  It is very common to have calcifications but they usually aren't cancerous.  They always look for a change in the way they are distributed.  It is amazing all we have learned that we never knew before.

Peg..I had never heard of microcalcifications before this summer...I remember thinking..what the heck?????  And then I read everything I could about them and freaked out.  But they ended up nothing.

Just got back from the BS...I am CLEAR!   YAY!  I have to see him again in 6 months.

I have quite a few microcalcifications.  The Dr. explained to me, it's when it's in a linear pattern and not just speckled here and there that it could be DCIS.  He showed me mine and this time they were in a linear pattern.  That's why the biopsy. 

I had my first benign tumor at 17, many needle biopsies, another precancerous lump in 1989.  All  in the same breast.  This is the breast with the DCIS.  He says this type of breast tends to get DCIS.  I asked if I should get a masectomy, he said the radiation would take care of it, it would kind of sterilize the breast??????    

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--

Titan - Have fun at the game. Congrats on going topless! When are you going to post pics? Ok, three months is better than daily or every other week. We are moving forward...maybe with a few steps back now and again but the direction is right.

I'm with Elimar...my rads onc gets one followup visit then it's back to my med onc & bs. How frustrating that in this era of instant communication that the communication between docs is so BAD. Did you ever ask your bs who's in charge now - they get paid enough let them make the decision. You shouldn't be stressing about it...it's bad for your health to stress. Re test results (prior post): I ask for a copy while I'm at the doctors and they seem to be happy to share. From this point on, I'm demanding a copy of all my results. 

I went to pilates yesterday...OMG am I out of shape. Could hardly hold my arm up, plus I can hardly bend anymore...it's going to be a slow rebuilding process. But I've got the time TG.

Laura- my hair really isn't long enough for a cut yet. I think it's going to be more shaping than anything else and it's a month out. I'm about a 1/2 inch and I'm beginning to like it. I think I made the appointment to make me feel like I'm making progress. Plus my hair dresser is so busy if I don't get on her schedule now, I won't get in until 2010.

I need to go, I'm making Fleur de Sel Caramels to bring to my onc's office next week. I was too tired to do anything like a boob cake on my last rads day. I infused the cream last night with lavender...I hope they turn out. They are all leaving my house as gifts. I WILL NOT EAT ANY CARAMELS.  (needed to say that, wish me luck)

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.