Time for Rads, questions..help please.

Chelee · 07-12-2006, 11:35 PM

I have had so many doctors appts. that I just can't stand it. Sometimes its just too much. (As I am sure you are ALL aware of.) It really wears you out. I missed the board for three days now due to all of them.

I went to my first Rads Consult. The Rads onc was nice enough...but I got lost with some of what he said?
I have some serious problems that they have to consider before doing my radiation. I had a modified radical mastectomy with clean margins, (but positive nodes) and on that side is where I have some missing, & under-developed ribs. So the Rad Onc doctor didn't feel safe about radiating my chest wall. (I have no REAL chest wall.) He said there is NO WAY to NOT get some of my lung...and I can't afford any lung damage he said, & I agree.

So he is talking about doing under my arm where I had the SNB...and up by the coller bone I think he said? He said that wouldn't get much lung?

My biggest question is...how much do we know that radiation REALLY helps? I see SO many women that have been through rads and still have recurrances, & sometimes NOT long after they had rads.

And if they can only do two places on me...and NOT where the breast was removed...is it worth it to me to go through rads?

So MANY HARD decisions we all have to make and be comfortable with. I have compromised lungs as is...and no ribs on that side where breast was removed. So is it worth doing rads in the under arm area (axilla) and coller bone if you can't treat the incision area on chest?

This Rad onc kept looking at his watch...I felt like he had to go. Plus he took 2 phone calls. So I didn't get to ask much. I asked how do we KNOW it will help me? He said what he does know is "If I had a 40% chance of recurrance for example, he can take that down to 10%'.
Now that DOES sound good...but I am still wondering how that will work for me with MY problems?

Is there anyone that has been through rads that REALLY thinks it helped them? Did anyone get any cancer FROM the Rad therapy? Does Rads REALLY work for everyone? And if so...how do they know that for sure? How do we know Rads doesn't spread cancer?

He mentioned its rare, but sometimes it weakens the bones and people get fractures...but that is like 1%. I have read of several people that had fracture ribs, so it seems like MORE the 1% to me?

I have an aggressive cancer so I want to do everything I can to get the best results. But I have read where so many people had rads and still get recurrances. PLus I am really concerned about getting lymphedema on the arm with that HAD the SNB. It already *hurts* as it is! What is the radiation under there going to do to me? I wish he would of told me the risks verses benefits in my personal case?

Anyone that has HAD Rads under the arm and in axilla area...and coller bone....can you please tell me your experiences with it and if you feel it really helped? What problems you might have had since? (How do they know it doesn't spread cancer?)

Sorry for all the questions...but I need to get some answers so I can figure out what I am going to do? I don't have anyone to talk to or ask...or I would.

Even if you can't anwer all of them...just answer what you can. Any help I would appreciate. I just want to know that it really works...he couldn't assure me of much it seemed. Or maybe I was too nervous?

Chelee

lu ann · 07-13-2006, 03:14 AM

I think you should call Cancer Treatment Centers of America and see if you can get an appt. with them for a second opinion. I went there after my rad. onc. here would only rad. my spine and not my mediastynime which also had mets. Their phone number is 800.577.1255. They have the latest equipment there, including a tomotherepy rad. unit which targets just the tumor and very little surrounding tissue. It has a ct scan on board to scan before every treatment.

They would be able to let you know if your insurance is accepted. They will fly you and support person out and supply all your meals. You would have to pay for lodging. If you decide to have treatment there, they have a place called "Guest Quarters" which you can stay at a resonable cost. They also have a group you can write to for additional money to pay for non-insurance covered expences. I think it cost me about 600.00 to stay there for 6 weeks.

I hope this is of some help with you. God Bless You. Lu Ann

DeborahNC · 07-13-2006, 04:16 AM

Can't answer your questions, Chelee, but I had recurrance within 2 years of lumpectomy (Stage 0/DCIS/ER+, Her not tested) and 33 rads. DCIS returned with a vengence plus a small IDC component, neg nodes, weakly ER+/PR-, Her+++. It took me almost a year to recover from the crushing fatigue of rads although that doesn't happen to everyone.

I felt on a gut level that I should have opted for mast the first time. I didn't have a lot of choice this last time as the excision was very wide and didn't leave me with much breast for anything other than a mast.

This time I opted for a bi mast although my left breast was healthy. I don't regret my decision in any way.

I hope someone can answer those questions for you.

saleboat · 07-13-2006, 04:41 AM

Chelee--

Studies pf radiation therapy have shown that is helps prevent LOCAL recurrance-- it won't do much for distant recurrance. I had a lot of radiation, and the Dr. said that it would reduce my risk of local recurrance by a substantial percentage, so I went for it. It is the standard of care for women with a high # positive nodes, whether or not they had a masectomy.

Just like with chemo, there's no guarantee that it is going to work, but it increases your chances of remaining disease free. And there are side-effects, unfortunetly. For me, it was fatigue. As far as I can tell, that was it, although I'm only 7 months out.

Good luck with your decision.

Jen

Shell · 07-13-2006, 06:05 AM

I had radiation after a lumpectomy, and didn't get lymphadema and didn't burn that much. I continued to work through the treatment, and I didn't notice any extra fatigue that a working mom already has. I got some edema of the breast afterwards, but went to a thereapist specializing in lymphadema, and it resolved.

I had radiation to four areas, including the axilla and supraclavicular nodes - my cancer progressed, but I don't believe it was due to the rads...

I would certainly recommend getting a second opinion to get your questions answered - you should push to get the info you need to address your concerns.

Good luck w/ things,
Shell

Ruth · 07-13-2006, 07:53 AM

I had rads to all areas you asked about~the way my Dr. described it to me was it would help significantly in local recurrances (less than 5% chance of recurrance in area radiated). I had clear margins with modified rad mastectomy also. I really didn't suffer from fatigue but I was also coming off of months of chemo and I felt better from that in itself. My arm swelled slightly and went back to normal after radiation was over. He explained that can happen sometimes. I had the extra radiation since I had 10+ nodes & it was the most aggressive thing to do. I am still NED and finished radiation in 2003. I agree that a second opinion would be a good idea given your weaker lung capacity and the missing chest muscles.

The area that was radiated on me just went through a breast reconstruction with implants and it is doing fine. I think ultimitely everyone's body responds differently to radiation as it does to chemo. My experience was a good one.

Hope this helps a little! Peace~Ruth

Chelee · 07-14-2006, 11:06 PM

DeborahNC, Us Her2 gals all have such an aggressive cancer and higher chance of recurrance which I why I suppose I should have the Rads. You had the 33 rads and still have a nasty recurrance which I am so sorry to hear about.
As you mentioned about the fatigue from rads...that seems to be one of the biggest side affects from Rads. Just the thought of going every single day is depressing on top of all my OTHER doctor appts. I am exhausted just thinking about it.

saleboat, Thats what I really never thought of before until I few people like yourself started telling me. That rads is really for the LOCAL recurrances. I never thought about it. Your doctor told you the same thing mine did as far as it would help reduce my chance of recurrance by alot. He said if mine was a 40% recurrance, he could take that down to 10%.
My Rad oncologist did say there were three things they go by to decide if you need rads...one is tumor size...if its over 5cm, the 2nd one I CAN'T' remember. LOL And the third is lymph nodes involvment. In fact my Rad doc said four or more. I happen to have five.

Maybe after my 2nd visit this week on tues I can find out some more from my Rad doc to make a decision. I am so afraid of anymore lung damage...I've had enough lung damage since this started.
But I am glad to hear your 7 months out from Rads and doing great.

I do want to increase my chances of remaining disease free as you said. I just wish there were more guarantees...but with this or life in general...there aren't any. I hate all these decisions. Thanks so much for your reply.

Chelee

Chelee · 07-14-2006, 10:35 PM

lu ann, I wanted a 2nd opinion really bad especially since I have some missing ribs on the side I had the mastectomy. But my cancer center tells me I am at the five week mark and I need to start right away!

I thought I was told you have up to eight weeks to start rads? Now this Rad Oncologist says 3 to 5 weeks. (I don't know what to think?) I would like another 3 weeks to make my finale decision...and time to talk to another cancer center...but now he makes it sound like thats not possible?

The CTCA sounds like it would of been a good place to check out...but I am out of time I guess. Did all of you have Rads 3 to 5 weeks after your last full cycle chemo?

Chelee