SEPTEMBER 2009 RADS

ccbaby

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....

MTG

ccbaby - Vent away. The situation stinks. And you have every right to be pissed. We're here to listen. And, when and if you want, I'm sure the wonderful ladies here will share their experiences about both options.

Titan

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..

Titan

And..on another note...saw both BS and rad. onc. today...the BS gave me quite a breast exam...actually a little uncomfortable but I know it was for the best..anyway...he could NOT find any lumps, bumps ..nothing..so I'm good to go..I see him again in 6 months UNLESS I feel different, find something whatever...I told him that I feel great and he said are you scared about that?  I said no, I will only be scared if I don't feel great...then the rad onc just looked at my breasts..said to come back in a year..when I made the appt. the receptionist..said "A year?""'usually people come back in 3 months..then went on to say usually the people that receive rads are alot older...well yeah!  So what was I doing there in the first place??? Oh well, that is another story..right...that we are too young to be dealing with this??? 

lollys

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

ccbaby

Thanks for the advice girls...Lolly's - I will definitely ask him about that, but I do remember him saying that now that air has gotten in there and it is 'contaminated', that the implants will not work because of risk of infection.  Titan - Congrats on your good news with exam and I will ask my PS about the 'gummies'

AmyIsStrong

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

BetsyBuzz

ccbaby - so sorry to hear about all your troubles. It's bad enough that you had to deal with chemo and rads and now this? Not fair!!!  I'm with Laura & Titan maybe a second opinion isn't a bad idea. Its hard for me to believe you only have one option. My sister, a surgical nurse and says once tissue is radiated...it's awful to do surgery on which might change the surgeons approach with you. Sending you a big {{{HUG}}}.

Titan - Congrats six months of medical freedom!!!!  I go in next week to see both oncs. I think I get three months before my first mammo. You've been there done that..tho.  I'm happy for you. I'm not so much worried about my boob, it's those little buggers floating in my lymph system that my mind keeps going to. I feel pretty positive they got the tumor with surgery and chemo but I too have other calcification's and post surgery had a positive node. It's so easy to get freaked out mentally.  I try really hard not to think about it, why worry right?...it just doesn't do any good. Easy to say, hard to do!

Has anyone else gained weight out there? It's depressing, I've gained 10 lbs.-not good for me. We joined our old gym last week. Now that life is returning to normal, I have to be good again. I gave myself a lot of lead-way through rads. Now I need to detox from sugar. Geez...it's always something.

I made my first hair cut appointment for Dec 2, hitting another milestone. 

Hope everyone is doing well.

lollys

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

OK..about weight..I too have gained about 10 pounds but I'm OK with it...I've always weighed about 140 lbs. (I'm 5 foot 5)..until about 10 years ago..then I dropped 15 lbs...never thought anything of it...but hmm..doesn't it take about 10 or so to grow a tumor..just a thought but anyway...last Feb. before DX I weighed 130.now I am back to 140 and I'm glad!  I feel that having this normal weight may mean that I'm normal too?  I feel that if I would start to lose again that I have IT back again...I'm eating whatI  I wantt, mostly good stuff..but still gotta have the red meat and peanut M&Ms..and chips!  Plus walking.

Betsy..not 6 months of freedom..dang..I still need to see the chemo onc. every 3 months..beginning in Dec...but I'm glad to do it..I think I want a mammo every 3 months too!

If you guys have a minute..make a long story short..had a mam on Monday..said I was "stable" come back in 6 months (well no Sh**8)..anyway, saw the BS on Thursday..said no bumps, lumps..ect...then I got a letter today from the radiology dept. telling me that they found an "area that is probably benign" but to come back in 6 months..I'm thinking..my BS reviewed the mammo...don't they freaking TALK?  I realize that it was a "form" letter but geesh...when they talked about me coming back in 6 months I said of course I will..I HAVE too!  And they said that this was coming from them (the radiology dept.)...This is all in the same building!  I KNOW that I'm being taken well care of but sometimes it is frustrating!  I have the surgical dept, the chemo dept., the radiation dept and now the radiology dept...guess I should feel loved...or something.

Thanks for letting me vent!

Oh..by the way my DH and I are going to the Penn State vs. OSU football game tomorrow..we get to go to the OSU sidelines at the start of the 3rd quarter so look for me!  I will be the one with the really short hair...I had my hair colored today and am going topless tomorrow for the first time!  Whee!!! 

MTG

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.

kawee

TITAN - I'm with MTG.  I have to have everything tied up in a neat little package. Call me a control freak.

lollys

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--

elimar86861

Titan, other than when they had a "board meeting" about me getting a balloon catheter radiation thingy, I don't think my doctors talk much either.  Some are also in the same bldg., like yours. It doesn't seem like it should be MY job to make sure they share info., but I have done all the paperwork so that theyall get each other's reports.

They all seem to want separate follow-ups too.  I am going to do one follow up with the rads guy, then he's history.  I'm not far enough out yet to have the first after-mammo, but that "found an area" business is a bummer.  Who needs six more mos. of anxiety!

BetsyBuzz

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)

lollys

Betsy what are those Caramels--they sound amazing --you and I seem to be on the same wave length --I started back to pilates yesterday too and feeling about the same!! have a good weekend--Laura

MTG

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 !

BetsyBuzz

Oo la la...they did turn out great. First you taste salt, then caramel, then choc, with a mild lavender herbal finish (cuts a little of the sugar taste).  I ended up with some left over caramel strips that after dipping in choc. ended up looking like slugs (very fitting for the NW). I put two pieces of lavender on them as antennas and they looked great! LOL. We brought them to our friends house last night, they loved them. Next time I may just make slug caramels...they were so cute and easier to handle than the little squares.

I am boxing them up today and delivering them to my neighbors & friends that kept my dh feed through chemo. The balance will go to the oncology departments that kept me going through chemo and rads. If I don't get them out of my house, I know they will call to me.

ccbaby - Keep us posted on whats going on.

Titan- I looked for you on TV...but didn't spot any topless women. I bet you had fun.

Have a great week everyone.

ccbaby

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.

Titan

I'm sorry Christy..that you have to go through all this stuff...but again..my sis in law did it and she is just fine..but I know exactly what you mean..who wants to go through the surgery, hospital stay..etc...but you may pop back quicker than 6 weeks..!  Keep that in mind...you may heal quicker than what the docs think.

I talked to the BS's nurse today...she read the report to me...its the same microcalcifications that were there before..just keeping an eye on them even though they were just biopsied and benign..really don't understand why they weren't all removed during the biopsy though...there were only 4 of them..what the heck???  Anyway...my BS is very, very conservative and if there were any concerns at all he would be on it...I know that just from the past few months..so I'm ok with it!

Had a great time at the game...the Penn State Fans were super nice...and it was fun going to the sidelines!  Got some great pictures...those kids are HUGE!   What an atmosphere! 

elimar86861

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.

unklezwifeonty

Dear all,

Hope you are having a reasonably ok time during the radiations. I'm led to believe that this will be much easier after chemo. I have a few questions:



I had 1 involved node at micro level (1/4th mm) and a tumor of 3cm. Removed by lumpectomy. One radiation onc says I don't need radiation to collar bone nodes. Says I can choose between canadian and standard fraction (either with boost) which I should get lying on belly. The other says I should strongly consider radiation to collar bone which precludes canadian fraction and requires getting rads lying on back.



Thoughts?

elimar86861

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.

unklezwifeonty

Elimar, thanks.

First radiation oncologist says that not even a single doctor at their practice (which is at a well known teaching hospital) recommended radiation to supraclavicular node in my case.

The second radiation oncologist who is at a community hospital says that the recently updated NCCN guidelines say "strongly consider radiation to supraclavicular node with 1-3 positive nodes". He says that the amount of exposure to lungs is inconsequential unless I am planning to do extreme sports or marathons where I will need every single inch of my lungs.

On one hand I want to treat this aggressively. On the other hand, I firmly believe that micromet places me somewhere between 0 and 1 node, so I should avoid getting radiation to the extra nodes, avoid exposure to my lungs and heart, and save 2 1/2 weeks of treatment by getting canadian fraction. Just wondering what others with similar diagnosis have chosen.

Titan

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!

Titan

Elimar..why did you have lung damage?  Does it matter where the tumor was?  Mine was upper outer so there was no lung involvment...guess it depends on where the tumor actually was in your breast??? Your tumor was so small??

elimar86861

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.

unklezwifeonty

Thanks Titan and Elimar!!!

Sunone

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?

Octobergirl

Elimar,

What kind of "blocks"  did your rad. onc. use to minimize lung damage?  I'm not sure what % of my left lung is exposed to radiation - tx. is in 4 fields -  and plan to ask at my Thurs. appt.  My rad. on. and his NP have given me the same spiel that my breathing will be sufficient unless I am a marathon runner and, anyway, one can live with one lung quite well??? 

I believe that my onc. has ordered the best tx. available to try to prevent local recurrance, but it is hard for me, not a doc, to really conceptualize radiation therapy, fully  understand the potential damage...and weigh the risks/gains. And the stakes are so huge,,,,if one doesn't have the maximum therapy available to one area, it is likely it can't be redone in case of recurrance.

After 10 txs. I began having quite a bit of trouble swallowing and was just told Friday (12th tx) that I need to turn my head further to the side and tip my chin upward more which eliminates almost all of my esophagus being in the field. So glad I asked to see the nurse as soon as I noticed the symptom.