January 2010 Rads Start

Hi everyone; Just a quick check in, having a hectic couple of days.

Today was #8. My breast is a little more swollen; it no longer fits in my bra cup. Still just slightly pink, although my SNB incision is becoming painful, and it's more pink/red that my breast. Not horrible, though. I'm getting "zingers" in my breast, similiar to what happened after the lumpectomy. Feels like a quick electric shock, goes away in seconds. Tired, too, but manageable.

Guess what happened at rads today: Ms Jigsaw Puzzle spoke!  She always has her hair over her face, looking down at the puzzle. I never saw what she looked like until today, when she lifted her head as I was leaving and said "see you tomorrow". Boy was I shocked. And saddened to see she's about 30-35 years old. The rest of us in that time slot are 50+, one in her 70's. Anyway, I said "yes, see you then!" So we'll see what lively conversation we'll have tomorrow!

Sorry to dash in, dash out; but I really wanted to say hey to all of you, and find out who's started, who's delayed, and how you're all doing with SE's.

More later.

8 down 8 to go.

Debbie

Just checking in...whilst sipping my shiraz and nibbling on some organic cheddar cheese.  Did tx #7 today (out of 33). Still doing ok. Skin is normal and the weird twinges are controlled with Aleve.

 I saw my doc today. She had an older looking male med student tagging along. I gave him permission to stay.He seemed more uncomfortable than I did. Besides, after having to expose the girls to a room full of med. staff for my lumpectomy, this was easy.

Is anyone else taking fish oil capsules? My doc ok'd it. Some studies are linking radiation fatigue to an increase in proinflammatory cytokines. Fish oil's omega 3 fatty acids supposedly help to decrease them.  I figure it's worth a try.

Melinda - My Rds Dr says NO flaxseed and NO extra Vitamin C at all -- she had me stop taking my daily multivitamin and just go with B Complex.   This is so confusing -- It would be nice if the experts would all agree on this for once. She does say fish oil is a great substitute for the flaxseed. I'm going to make an appointment with the nutritionist in my oncologist's office to get more info.

yeah my onc is not sold on anything besides D and calcium. Sometimes I wonder if that discounts the placebo effect, if you take a supp every day, maybe you keep the issue in your mind and also eat better.

The rads nurse explained that the radiation needs oxygen to be effective, so I should not take any vitamins that act as antioxidants.  There was no mention of stopping my Vitamin D or calcium.

I had my Rad Onc consultation today.  I'm not really sure what to do - how did you ladies all decide that you would go ahead with the radiation treatment recommended?

The dr gave me all kinds of stats like if I have radiation it will increase my survival by 10%, but that if my heart gets damaged I'll end up with heart disease and may suffer a heart attack, also my lungs may get damaged and I might experience problems with that which might not show up until later, also that my ribs could break from radiation damage but then they would heal. 

Regarding the lungs he said that if I developed a cough I was to go back to see him rather than a dr at a clinic who might just prescribe antibiotics when in fact I would need anti-inflamatories.

He also talked about the permament effects of the radiation on my skin - discolouring like darkening could be permanent as well as red markings etc.

He mentioned that there is a slight chance too that the radiation could actually end up giving me cancer - he mentioned chernobel (sp?).  But that might not show up until years later.

Regarding lymphedema he did say that there is a slight chance that I could develop that and/or the radiation could damage the nerves in my arm which could lead to pain (which would require medication) and limited use or no use to my arm permanently.

He told me that I would be on my back and that I would have both my chest and underarm radiated.

It was so much information I was glad that I signed up for the study that was going on which recorded my consultation with him so that I could review it with my husband - he couldn't make the appt.

Some good news that came out of this appt is that he confirmed my stage (2) and grade (3) and he told me that my tumour was 3.5 cm not 5.8 as the surgeon reported (incision and mastectomy sizes are not added together).

Also he told me that if I wanted to have implants I could with radiation but that they would adjust my treatment - instead of 3 1/2 weeks high dose radiation I could go 5 1/2 weeks with less radiation spread over longer time which would be easier on my skin.

Another good thing was that I am going to have a CT Scan before I start.  I was wondering what kind of testing/scans I'd have once I finished my chemo.

And another good thing is that I can get my family vacation in before I start radiation.  He agreed that I could wait until the beginning of March to start.

So ladies I'd really appreciate hearing about how you decided to go ahead with radiation and any thoughts you have on what my oncologist told me today.

 Thanks so much!

Marie

untreatable through rads or just plain untreatable?

Sanaisa, I think you are referring to IMRT...I  am receiving this as my tumor was on my left side and this is a safer setup missing the heart and vital organs.  It was authed by my insurance as well.  

Marie, I would look for a second opinion on your rad diagnosis...Masectomy's usually don't get rads, but maybe with lymph node involvement it is different. Either way, I would want to hear other medical opinions before making my choice...   

Thanks for all your info on the supplements...will call my surgeon Monday...ran out of time today! Have a great weekend everyone..

Melinda 

Thanks Onty! 

 I am going through the public system - I went to the BC (British Columbia in this case) Cancer Agency offices for this appt.

I had considered getting a second opinion but what would happen if another dr said no to radiation - then I'd be in a real quandary.  Who would I believe?

I've changed my Med ONC appt to the day before my chemo and I will ask him his opinion on what the RAD ONC said.

Often my Med ONC appts are in conflict with the time of my chemo and I only get to see him for a couple of minutes at most - unfortunately he is an extremely busy dr. 

Switching to the day before will ensure that I get to spend more time with him and not be rushing to my chemo appt.

In any case I will be switching to the March RAD group or not at all - thanks for posting your experiences on here.  It was very helpful to check in before my rad appt!

Marie

According to Wikipedia:

Vitamins A, C, and E are antioxidants.

And on that note, good night ladies!  Enjoy your weekend.

Hi gals, I have stayed away from all these rad boards because I also had a mastectomy like Marie and didn't fit any of the criteria for rads.  Surprise, surprise, I just found out that I will need rads afterall!  Ugghh!  I think there were a lot of reasons that I ended up in this position (age 39, aggressiveness--grade 3, small margins--1mm and 3mm) The rad onc told me I was kind of in the gray area for rads based on all these things, but I think what put me over the top is that the DCIS they found did NOT clear the margins.  I'm still not understanding how DCIS which is contained in the milk ducts wouldn't clear margins (my thinking is you take out the duct, all cancer goes with it, right?)  I don't know, but I guess there are some studies out that place way more importance on DCIS than orginally thought, especially when the woment already has had invasive components.  I didn't get a 2nd opinion, because like Marie, I'm thinking that had my 2nd opinion said no rads, then I wouldn't have known what to do.  I guess I'd rather be aggressive with my treatments than always be second guessing my decision.  Also, my rad onc brought my case up to her board and they almost all agreed with her.  So alas, here I am.  Can I please join this thread?  I'm not sure if I will start rads in Jan or early Feb.  My planning session is this next Thurs.

MarieK - I am still struggling with my decision to go ahead with rads and I am 3 treatments in.  I don't know why I'm so bothered by it, but something in my gut is telling me it's not the right course for me.  Obviously I'm ignoring my gut right now!  So I'm stuck there with ya - don't know what to do!

sanaisa - I am actually ecstatic about the divorce and can't wait till it's all over and done with and have this jerk out of my life.  It's just the health insurance part that scares me and is what has us holding off for now.  I'm a stay at home mom and will be going back to school in the fall and won't have insurance once we divorce unless I buy private ins.  With a pre-existing condition now - well, we all know I'm gonna pay out the wazoo! It's a mess, but most days I just try not to think about it!

Just curious - since our diagnoses are so similar - are you doing Tamoxifen and if so, when do you start?

Re supplements:  1.  My eye doctor prescribed 2 grams fish oil capsules per day for dry eye and my rad onc told me to keep taking them.  2.  My rad onc said the multi-vitamin, B complex, calcium, and Vit. D were all OK but suggested (He did not insist and I was the one who raised the issue) I discontinue 500 mg of Vit. C during rad treatment.

Re side effects:  1.  My BC is left side so heart might be a concern but the angles used should negate that.  2.  He predicted some scarring of lung tissue but that it would not affect my life.  3. Ribs will also received some rads but only severe trauma (such as car accident impact) would cause a fracture.  Hugs are OK!  4.  The rad techs will take periodic x-rays to monitor my condition.

Re skin burning, etc:  I am having a hard time finding aloe without Vitamin E or fragrance, etc.  The health food store suggested I try the thick aloe intended for dilution with water to drink because it has no additives.  I know it's early, but does anyone have any experience with aloe or the green tea spray? 

Daylilly Fan - My Rads Dr told me to use the green tea spray 4x daily, along with a steroid cream. She says they do get better skin results with the two used together. The spray so far is no big deal to use -- you just brew up a strong batch, then put it in any little spray bottle.  Spray it over the entire radiation field and let dry.  The only problem I have is standing half-naked in a ladies' room stall at work waiting for my left breast to dry! I have only had two tx so far, so it's too early to tell if it is helping, but so far I have no redness or swelling.