October Rads. 2009

Anonymous

I asked this over in the Radiation forum, but didn't get much response.

I'm questioning the need for radiation. My oncologist had me line up radiation even before she got the reusults of a contrast MRI and the clean reports from surgical pathology. The last time I discussed rads with my surgeon he said to wait and see what the dble mast pathology would show.

What do they have to radiate? There is no sign of cancer in nodes or breast tissue, breasts are gone and I continue on Herceptin until April. I've heard that once you've done a full course of radiation that, should you develop another cancer, radiation cannot be done. I don't want to take that option off the table unless necessary.

 Questions, questions, questions.

brookside

kt57, where in wisconsin do you live?  I live in Wisconsin Rapids and went to the Marshfield Clinic for one surgery.  Did you go there too??

strngwmn39

swampy, 

How old are you? Premenopausal or postmenopausal breast cancer? I'd love to take a guess as to why your oncologist suggested a consultation with the radiation oncologist (and that's what it is, a consultation, not treatment) but you've not listed enough info, so I will tell you why it was suggested that I have radiation and maybe that will help. 

Why not talk to the radiation oncologist to get an opinion? You may find that the rad onc doesn't feel you need radiation either. I went to the first appointment (consultation) with an open mind, knowing that I could decide not to do it.

In my  case, I was diagnosed at 39, BRCA2+, bilateral cancer, (invasive on one side) with 1+ node. Radiation is not a clear cut recommendation for women in my situation, but some studies indicate a reduction in recurrence and an improvement in overall survival (this is clear for women with 4+ nodes). My radiation oncologist felt that I would receive benefit, given my age and my BRCA status, with the protocol they use at the treatment center where I am now receiving treatment.

I also thought as you do - why use radiation now, when I could need it later? The answer in my mind is that a chest wall recurrence is much harder to treat - and I would rather try to prevent it if I can. That's my reasoning.

 Hope this is helpful. 

Michelle 

Michelle 

Anonymous

Michelle...

I'm almost 68 years old. Obviously my cancer was post menopause. My cancer was IDCS (left side), but I opted for a bilateral mastectomy. Pathology 0/14 nodes left, 0/1 right, and all examined breast tissue was negative for cancer.

I do have a consult with the radiologist on Oct 13th.

strngwmn39

Swampy, 

Was it multifocal? (throughout the breast, or close to the chest wall?) That may be a reason your med onc knew to see the rad onc regardless of pathology.

It will be interesting to see what the radiation oncologist says. The reason that radiation is an effective treatment is that it provides local control for the disease in a mode that is different than Herceptin and chemo.

Michelle

strngwmn39

Dragonfly 1976 - you and I are also in the same boat! Have you started radiation? 

I have had 2 treatments so far, and while my post-surgical swelling has gone down with PT and a lymphedema sleeve, my arm feels heavy after treatment. 

I definitely feel the twinges that elimar mentions - all the time, even after just 2 treatments!

I'm concern because I have expanders - after treatment my skin feels tight for several hours, then it relaxes. I'm hoping it doesn't get alot worse.

I also feel warm. 

My rad onc staff has told me that it is not possible to pre-treat the skin for radiation reactions...so I have a cream that they have given me ( prescription that I use as directed) but I'm not sure about taking all sorts of other steps to put stuff on my skin - has anyone else been told this?

I want to avoid radiation burns, and I believe the staff at this center is very good and that they would tell me what I needed to do to accomplish that. Its so hard to sort through all this info!

Michelle 

PauldingMom

Swampy-ditto the advise here. Go to the Rad. doc and just see what they say. I'm confused as you are. Since my Mom and I are going through this together I've seen both sides of the coin. She opted for the masectomy and no rads. while I went for the lumpectomy and rads. I was under the assumption,like you, that what's there to zap if you've had it all removed?

I had my final simulation today, and start rads tomorrow. Won't be done till after Thanksgiving and am feeling a little down today. Not looking forward to the drive for what my doctor said "may" help. But I will do it and hope for the best.

By the way, no one ever told me that you could never get radiation twice! I'll try and remember to ask about that tomorrow. Is it that you can't have the same organ done twice? or just general no rads. twice?  

Anonymous

Thanks for the input gals. My tumor was close to the nipple and not the chest wall.

PauldingMom, I think the body can only accept a given amount of radiation regardless of location. I've read this in several places, but I don't know if that is true or not.

redsox

You can have radiation in the future to a different location in the body but generally not more radiation to the same area treated this time.  Maximum tolerated dose relates to each area of the body separately.

strngwmn39

pauldingmom, swampy:

redsox is right - you can only be radiated to a given area once - that's it.
Michelle

tracyanne

My radiation is because my DCIS was extensive and so close to chest wall, to chest muscle where breast meets ribs, and to skin.  Even with mastectomy, that chest muscle margin was only one tenth of a mm...rad onc said he'd be giving extra attention to that area.  I can't imagine what 0.1 mm looks like, but I guess under a microscope it's measurable.

Had first treatment today, and was surprised at how emotional I felt.  Comes on suddenly, I find.  This morning it was when I was shown into the dressing area and handed the gown, How many times have we all changed from clothes to gowns in the past few months?!  Blinked away a tear or two, wondering where they came from.

Then was surprised that I was actually alone in the room for the five to ten minute treatment. Not like mammography where the tech stays in the room.  The computer does all the moving and positioning, and the techs leave to watch on monitors...it was just the weirdest, loneliest feeling.  I hope I get used to that soon. 

It was nice that a beautiful mural was painted on the ceiling :- )

sakura73

I'm taking lots of naturopathic supplements during radiation - no antioxidants, though. I cleared it with the oncologist.

I have number 9 of 30 today. So far no redness, and no aching though on one day I am pretty sure I felt the beam on me. I am using vitamin E cream and have also largely cut carbohydrates out of my diet. Not sure if it is helping avoid radiation burn, but I have lost 3 of my chemo kilos, which is no bad thing!

I agree that it is a lonely feeling - traceyanne I too got really emotional on my first one, and again a couple of times since. It is quite depersonalising, even though the technicians are so nice. Most days I am okay with it, and I hope this continues.

liztaylor1

Traceyanne and Sakura, you wrote exactly how I feel.  The only times I feel alone are on that table in that cold room.  I just close my eyes and think about pleasant things.

Pauldingmom: we are here for you and will be thinking about you tomorrow!!

I went back to work today.  Since I'm the "boss" (LOL) I can rest when I need to.  The problem is that everyone wanted time with me today and I had to leave for rads at noon.   In some ways my job is nice and distracting from the rest of this. 

I read these posts as often as I can and you are all in my thoughts.

BRING IT ON!!

Liz

MTG

sakura73 - I'm curious about the effect of carbs. I've cut them out at home for months now but lately I've been wanting to indulge myself and thinking about having bread and rice and stuff around again. Didn't realize it's absence could be helping with rads as well as my waist line. What's the scoop ?

Helen-Jackie

sakura

I am taking alot of supplements and  vitamins.. which ones did your oncologist allow.. i am taking mushrooms, curcumin (tumeric) NAC, vita a, b, c,d lol, e, and green tea, my onc said take em all, her ddint care, but the doctor said no for tamoxifin.. i dont thinki can do 5 years without these supplements.. what are u taking now and after

are u usuing any speacial homo treatments, what about creams..

PauldingMom

Thanks for all the information. It's great to know that, unlike what everyone who is not going through this thinks, it's okay to be scared, sad, mad or just emotional. 

Besides the sudden onset of chemo. induced menopause, this therapy leaves me very emotional. I'm trying to come to terms with it and all I can think is that it still sucks. I'm also down because I can't find any positive info. out there for my triple neg. status. It may be time for me to seek professional support.Last night I read that I stand a 30% chance of getting the cancer back and if that happens about 9 mos. to live. Very depressing. Hubby said to focus on the 70%, not the 30%. I'm trying. 

Sorry for the negative post, but that's one of the main reasons I come here. Information and support.

Pink Hugs, Lisa 

debnyc

Dear Lisa,

I'm sort of in the same emotional place as you are. I never cried through the all the biopsies, tests and surgeries. Now, after my 2nd surgery, waiting for radiation to begin, I've hit a wall. I cry at some point everyday.  It started when I was waiting to see the medical oncologist. A wave of emotion came over me and the tears flowed. 

I am in the process of looking for a therapist that takes my insurance. In the meantime, my PCP, who is a BC survivor, herself, recommended that I contact SHARE. You call their toll free number, (866) 891-2392 and can speak to a breast cancer survivor with a similar diagnosis. I've found it extremely helpful. Their website is http://www.sharecancersupport.org/

Deb

Dolores81035

Has anyone else ever have radiation canceled because the radiation machine was broken? They called me and said they would reschedule when the machine is fixed.

liztaylor1

Dear Lisa,

I'm in the middle of a meeting (with a lap top...) but just want to tell you that I am here with you in this journey. While I agree with your husband - focus on the positive - frankly, I understand your feelings.  Please share them any time.  I can feel those tears right behind my eyes (I am the one who still hasn't cried - with diagnosis on 8/24).  Only some tearing up when I thought about my sisters (both younger than me).

Need to pretend that I'm listening in this meeting.

Liz

josybee

Hi Ladies, I am having my last Taxol treatment on Wednesday, met with radiologist last week and told me I will be getting 28 treatments and probably starting Nov 2nd. Will be going for simulation within the next two weeks. I am going to try to set up morning appointments for rads because I am planning to go back to work aroung Oct 20th (I work 3 days a week). I figured if I do it in the morning and then go to work, at least if I am tired I can go right home after work and sleep. Anyone have any suggestions about morning ot afternoon??

Helen-Jackie

hi deloros

yes the machine needs to get serviced every few weeks.. so i did one, then the machine was out of service today and i go back tomorrow /

Dolores81035

Thanks Helen-Jackie I will not hold this reschedule against them.

steeny107

Lisa 

Your feelings are normal, There are days when I just cant shift the negative thoughts.  It is so scary. I signed up for some counselling and just pour out my fears to her.  I find that telling friends and family doesnt work as they say just be positive, and I say to myself HOW.  

Our lifes have changed so much since our DX we now have to think about the end when before we just thought about living.

I try and say to myself, well your here right now today and although I am weak and tired from the chemo I am here and feel ok.  So I try to enjoy and smile for today.

I hear stories of people just dying, my aunts bestfriend just died from an ulcer, her husband found her in the morning.  I use these stories to appreciate that I am still here and no one knows when there last day is going to be.  I hate that I even have to have these thoughts and sometimes think my aunts bestfriend had the easy out.  If and when my time comes I want it like her, quick and painless.  But right now I am planning on being around as long as my body will let me.

I also stop myself from reading stuff online, I only read the inspirational stories as reading all the other stuff just put me down. 

Deb I am going to look in to your website.  I am always looking for someone with a similar DX to compare to.

 good luck to everyone

Michelle 

LittleRed

This is now my second week of radiation.  So far so good.  No redness, no discomfort.  I hope  it continues this way.  This is so much better than the chemo.

I'm working now too.  Only 3 days, 8:30-1:30.  Then I go for treatment, then home.  Right now that's enough.  I'm tired.  But work is a good distraction, and the part-time schedule is easing the transition back.

Best to all you ladies - be good to you.

PauldingMom

Thank you all for the advice and well wishes. I'm gonna check out that number and site Deb. Thanks!

First Rads. went well today. Might have to go ahead and get a tattoo or two (Hee hee, tattoo or two!) as the tape left me raw in some spots. 

Lesleyanne67

I am hopping over to this group from Sept too I just had my 6th of 33 today.  So I had my simulations, tattoos and first couple "zaps" in late Sept but the bulk of treatment will be this month.  A little tired in the afternooons, I went for the 8am time slot.  Othewise holding up well. 

Have heard some ladies talking about nipple pain, I guess it gives me reason to be happy about the bilteral Mx - no nipples to burn anymore...

tracyanne

About that 30% negative vs. 70% positive...I like what someone said here on another thread about how her well-meaning friends and family didn't want her to think about the 30%...that the 70% chance of a good outcome was so much greater than the possibility of a bad one!  Why should she worry about the 30%?

Her response to them:  "If I told you that airplane you were about to get on had a 30% chance of mechanical failure, would you still get on it?"  Of course, the answer is no...suddenly 30% seems like a signigicant number after all!

dsgirl

Hi again everyone.

Pauldingmom-Lisa glad day one went ok for you, I ended up with a few tattoo's too, but they are so tiny I have a hard time finding them, I used to say never in my life will I bungee jump, have tatoos and body piercing, well, I can now say I broke one of those -lol. Really mine are so small the techs always draw a circle around them with a marker, and tell me not to worry if the markings go away, they reapply as needed.

As far a being emotional, thats ok, I think that is what these boards are for too, Lisa. Let it all hang out, but your husband is right, after venting focus on the 70%. And remember those are just stats.

I read with interest (and a certain feeling of doom too) the posts about carbs, I am a sugar junkie, 2 teaspoons in coffee and tea, so if sugar is not a good thing during rads I just have to do without  my coffee in the morning, and then I am not a happy camper. Believe me I have tried no sugar, splenda, saccharin, and so on and after a week or so I just decide not to drink the stuff, yet of course I really like and need my coffee with breakfast but it has to have that sugar. I guess tomorrow I will ask at that question of the techs.

Boy I hope they call me if the machine is down, hate to drive so far for nothing.

My skin seems to be holding up pretty good, had # 12 today. Saw doc and forgot to ask about the red wine, but I am still having a small glass every nite.

This board is moving fast, seems like I posted here sunday and we are on a new page already, but welcome to everyone who just joined Oct. rads.

Time to get going and fix supper, my turn tonite.

Take care everyone, sending gentle hugs

dsgirl

sakura73

MTG my naturopath told me that a low carb diet lowers our body temperature, which can reduce the burning impact of radiation. She says her patients who cut out carbs always burn less.

Helen-Jackie I am taking I3C, calcium, green tea, curcumin, reshi mushroom, methyl transfer, PSK, and a few other things. Took them all through chemo too, except the I3C which is new. I don't think I want to take Tamoxifen (have not made final decision - and if I do start it won't be until the New Year) but the I3C helps with estrogen balance. The radiation oncologist was fine with me taking all of them. During chemo the medical oncologist had no problems with them either.

 Had treatment 10 of 30 today. No burning yet. The radiation oncologist said that if I don't  have any pinkness yet it means I probably won't burn badly by the end. She said the radiaiton in my case is not focussed on the skin, whereas in the case of mastectomy you have to radiate the skin which is why sometimes those women burn more.

 Hope everyone is doing okay!

 

linn56

I'm starting soon. Had my initial consult last week and am going back tomorrow for what the radiation doctor called a "planning meeting". Not sure exactly what will be done, but I have an idea based on what the rest of you have described. She said there would be 2 before the rads actually start. Doesn't "Planning meeting" sound very relaxed? I could imagine all of us sitting down at a conference table with coffee, donuts and a blackboard.

Wish I felt that relaxed.