Sept 2011 Rads

TheDivineMrsM

I know just what you mean about the markings. I don't have any tattoos and WAS happy about that at first. My tape drove me nuts so I took it off and Wed. they will just have to tattoo me, at least that looks like freckles.  When I got the markings and changed into my clothes, I just cried! I felt like a pumpkin that was ready for carving and could not imagine being intimate with my husband with markers all over me. I think the doctors, techs, and nurses become desensitized to all of this. Every time I have voiced my concern about something like this I get, " its fine, its only for 6 1/2 weeks".  If I hear that again, I'm going to go off on someone!

Big HUGS TO YOU

Anyone doing Xeloda during radiation?

I had my 9th treatment today, and I am doing well. I have 6 regular and 5 boosts to go.

I just met with the RO that my BS recommended for the first time today and I have been rather down ever since - I didn't cry in the exam room and was able to joke around with the RO, who was something of an old jokester, but the whole experience was off-putting and I've been getting a little tearful every 90 min or so ever since, basically starting from the parking garage on my way out...

I feel a little silly about it because I *know* I have the best diagnosis and prognosis and I'm very lucky and all that. But I don't feel lucky that everyone wants me to have all these treatments with side effects that get in the way of my regular daily life whereas my disease gives me no symptoms and doesn't bother me in the least. And these docs don't seem to get that for me it is a very big deal to not work out for several weeks, and that it adversely affects my mood and I also have to bow out of competitions that I'm sort of expected to attend. He didn't think I should have fatigue but he was more worried that all the sweating and chafing would wreck my skin. So he was thinking maybe 3 weeks or more without paddling or wearing a tight sports bra, so that pretty much eliminates running since I am larger-breasted. Sigh. I know it all beats dying but I don't feel like 1cm or so of DCIS (that was supposedly all removed now) is going to kill me anytime soon or ever.

I am going to meet with a medical onc tomorrow and I really, really hope that he will talk numbers with me, unlike this doc. I think I'm going to ask what he thinks about me postponing rads until late Nov or early Dec, when I would be coming off the water and working out indoors more anyway. I really think it'll be a lot easier to switch up and even skip indoor workouts. We had such a rough spring with all the flooding that I've already been so frustrated and I just hate to miss any time on the water right now while it's still warm enough here to go out. Not to mention I have a brand new canoe that needs taking out and racing. Has anybody else been able to postpone their rads for a couple months?

For those of you that are not rolling your eyes at my being such a baby, here are some specific things about this RO that irritated me:

-he automatically assumed I would do rads without presenting it to me as an option, starting off the visit with "ladies with your type of surgery always have this rad tx afterward". really? then what about all the studies conducted on women with DCIS and diff tx to determine which ones are at the highest risk of recurrence? I didn't get into that with him bc he didn't seem to want to talk about research at all, and I know that I'm actually probably a good candidate for rads (based on my VNPI thingy)

-he said he would never do partial breast rads or accelerated rads on someone my age because it was still "experimental" and for that reason, he would also not consider me for any clinical trials. For the record, I am in my 40s so I am not THAT young! 

-he dismissed my questions about potential damage to heart (I'm getting rads over whole left breast) and lungs and about potential autoimmune disease that runs in my family and I may or may not have. he just said "not a concern" to everything I brought up. Just waved his hand.

 -he told me that if I did have a recurrence of DCIS, they would do a mastectomy next time, not another lumpectomy, which was certainly news to me and my partner. really? even if it was just microcalcifications again?

-he and his resident seemed almost more interested in this fiberadenoma that I have in my healthy breast than in my incision. they both palpated it and asked me if it had ever been biopsied then he said, "it doesn't feel like cancer" and "well, I guess it's probably nothing if it has never been biopsied in all this time" (I told him I'd had it for over 20 years). They even wanted to measure it with a little ruler - I think maybe it was a lesson for the resident? maybe it's pretty large? I dunno, I am so used to it. But I was surprised they cared about something that wasn't really going to be treated and I sort of felt like a guinea pig or learning cadaver or something. I dunno how to explain it but it wasn't pleasant.

Nat

Wow Nat our age, dx, recommended treatment and histories sound like they could be off the same chart! I'm 42, DCIS, lumpectomy and have been dx with Lupus years ago and within the last year was told I don't have Lupus. None of my doctors seem concerned about the Lupus. I've asked if all this treatment was over kill and was told by 2 doctors that there is no such thing, its cancer and this is what needs to be done. This dx just takes over your life, its difficult when you feel great, but know that you wont in a few weeks due to side effects. It makes my head spin! But I guess the bottom line for me is...I will do whatever I have to so I am here for my girls, just hope the family can put up with me thru the SEs.

In general I spend 2 hours a night doing research and reading here. It has given me lots of great info and questions to ask. If your not satisfied with the answers from your RO, go check out another one. It is your choices and your body, try to be as comfortable with the knowledge as you can and go from there.

Keep posting to let us know how you are doing.

Hugs!

Natters:  I am certainly not rolling my eyes at what you are saying.  I know how it feels to be uncomfortable with rads.  The people here and on the July and August 2011 rads threads were witnesses to my emotional misery during rads.  For me, it was never a question of having or not having rads because I wanted to throw everything I could at the disease, including chemo, but that was my choice.  It sounds like you are unhappy with your RO and no one could blame you for that.  If I could go back in time, I would have run to a different rads center after my first visit with the RO.  Please try another RO if you can, but don't wait too long.  I am not sure about the window for rads effectiveness, but please take good care of yourself.  I don't think you are lucky with your diagnosis.  The really lucky people do not get cancer at all.

Stormy - LOL, yes he does. Aloe, when ingested, aloe is believed to act as a natural laxative, help with weight loss, help with anemia, and help increase insulin production in the pancreas, among other things.

Thanks for the all the support, guys. I had a MUCH better appointment today with the MO, and that helped. I asked him about waiting and he thought that I'd be Ok waiting as much as 2-3 months to start rads, but that I should discuss it with my RO. And although it went well today, I've still been a little teary. So maybe I do need to see someone else b/c I would have to see this other guy 7 more times if I do start with him.

Stormy, I don't have lupus but my dad did, and my aunt and cousin. My sister has RA pretty bad, too. And I just started getting pain in my wrist/hands last year and although I haven't had a real flare-up this year, I have had some achiness, to the point where I was planning to see a rheumatologist if it got worse. I was nervous that rads or Tamox might bring out something genetic in me for either disease or some other autoimmune thing...I dunno. Maybe it's silly, but it's a concern and I just wanted the RO to hear me out, not just dismiss it. And I know EXACTLY what you mean about this dx sort of taking over your life! I do feel great and I don't have any symptoms. The only pain and discomfort I've had is from the damn tx grrr I will go through it all just to try to avoid being treated for it all over again, I guess. Your daughters are a very good reason for you to stay well! 

Julianna, isn't it too late for brachytherapy? I thought your BS had to implant something in you while they were doing the lump or MX? The one good thing about getting a second opinion is that maybe I could find out if other DRs would consider accelerated or partial radiation. I am at an NCI-designated comprehensive cancer center but the rads are done at the hospital next door and maybe they are not as cutting-edge...

Ceeztheday - I had microcalcifications on my mammo, no lump - but also no discharge from the nipple. Actually, I do have a lump that I've had for 20+ years in my healthy breast, but it's B9 (fibradenoma). 

Elizabeth - sorry to hear it was so miserable for you. Reading your post made me think it might be worthwhile to try another DR. The center itself is located halfway between work and home, so it's super convenient, but there are at least 7 other ROs at the same center I could see. And one of them apparently is very active, runs every day, etc. So maybe he could empathize? Running is my Prozac and my Xanax and if they take that way, then they might have the prescribe the real deal...

Pam, your post was SO encouraging. Even though I am a grade 3, which I get is "most likely to succeed," as far as cancer goes. But I got good margins (smallest was 5mm) and I'm ER+ and  willing to start taking Tamox tonight (just got my Rx). But I love hearing that you were able to delay a couple months. I just was allowed to start exercising again on Monday and I really want to take advantage of the last 2-3 months, as long as they'll give me, on the water and on the trails before it gets too cold and icy here. Not to mention the 2 competitions I signed up for. I don't have kids and these activities are everything to me.

Nat 

Well girls it looks like I will start radiation tomorrow.  2pm is my scheduled time.  I am so ready to do this and get it over with.  I sure hope it isn't bad at all. 

Good luck tomorrow, ksmatthews!  Number two for me today and I was done in 15 minutes.  I asked the tech about staying covered with a towel during treatment and she said that there have been several studies that show staying covered doesn't affect efficacy of treatment.  

Well, #2 today.  It is not bad at all.  I go in at 4 and out by 4:10.  I feel a little irritated but not to bad.  I will usually see th Dr. on Thursdays.  I will see if she recommends anything to use.  They told me not to use anything until I see the RO. 

I had treatment #10 today, and I am doing well. No side effects yet, except near my scar, my skin looks a little darker. I have only 5 more regular treatments and 5 boosts to go.

Natters, is your RO planning to do rads in the prone position? (lying face down). My RO says she does this to protect heart and lungs. I'm not sure if that is standard procedure for all doctors? I think you and all of us have a right to have our questions answered...that is frustrating that your concerns aren't being addressed!
Stormy, my itchy tape during chemo turned out to be allergic reaction to the tape...I do feel like sometimes the techs, nurses, etc become desensitized to the fact that we are all going through a lot! I feel like a pumpkin that has been carved already with my scars, tattoos, etc...what a mess!

My vent of the day: I was supposed to start rads on Tuesday and they called as I was on my way to tell me the machine was down and service tech was on the way to repair. Today I got the call as I was leaving my house that the machine was not working. I burst into tears and my husband said he didnt understand why I was crying. Really?! I want to get going and start marking the days off so I can move on. I am thankful to be 4 weeks PFC and feeling better every day! Waiting for some hair growth.....

Natters:  I had whole breast rads on my left breast, too.  I asked the RO about possible heart damage during my CT sim and he said that for most people, the heart sinks down into the chest when they lie on their back and the rads was given to the breast sideways instead of overhead.  The CT confirmed that I was one of those people.  He said they would have planned rads to protect my heart if it did not sink down.  Of course, you can tell from my previous post that I do not have a high opinion of my RO.  Since I have already finished rads, I hope he passed Rads 101 with flying colors.

Just posted this over on the august rads page, but...



Yesterday was day one...and as I stared up at the machine, I kept saying over and over- merilee's healing light, merilee's healing light...thanks for the anchor, girlfriend, I guess I needed it. Today's day two went smoothly, also.



31 more to go. X's on the fridge calendar. My last class of the day is theatre, and those dramatic teens are counting down with me; funny sweet.