Time for Rads, questions..help please.

[Chelee]

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]

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]

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]

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]

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]

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

[tousled1]

Radiation is used when you have positive nodes. I am going to start rads July 24. I already had my first 2 appointments to discuss what was going to be done. I was told that my entire right chest area, collar bone area, and axillary area would receive the treatment. I had 26 nodes removed and 14 of them were positive and a bilateral mastectomy. I was also told that since the entire right chest area is being treated that one complication that could happen (hope it doesn't) in pneumoia in the right lung. Also was told about the fatigue which I believe is mostly due to the fact that you have to be there everyday. As everyone else said, if you feel your questions are not being answered please seek a second opinion. Good luck to you.

[Chelee]

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

[Chelee]

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]

tousled1, So you already have your start date. I should be starting about the same time as you IF I decide to go through with it? Still have not made up my mind. Your Rad doc is going to do the three places they WERE going to on me UNTIL they found out I was missing all the ribs on that side. I have nothing there to protect my lungs from the radiation. Thats what makes my decision harder. I can ONLY have the Rads under the arm in the axilla area and coller bone...but NOT where I had the actually lump. I wonder if its worth it to just treat the two places and NOT the main place the lump was at?
At least this thread has helped me come up with some more questions I would like answered when I go in Tues to see my Rads onc.

tousled1, You were told the same thing about possible lung pnemonia from the rads. That concerned me. I already landed in the hospital once with lung damage...I don't want anymore. I know things happen...but my luck hasn't been very good. My Rad doc said that is very rare...I sure hope so.

I wonder how much of the lung can get hit with the axilla area? I need to ask my Rad doc that now that I think of it. He has pretty much decided we can't do my chest. But under my arm I am still missing those ribs and that exposes my lung...RIGHT one like you.
However it seems the biggest complaint and side affect is the fatigue. I have had something go wrong at every step of my treatment...thats why I am a bit worried. I wish I was going to John Hopkins, or some other big cancer center. One with more experience then the one I am going too.

I wish I had time for a 2nd opinion! But I am being told I don't. That doesn't seem right. This place has stalled me because they KNEW I wanted a 2nd opinion. Thanks so much tousled1.

Ruth, Your post is pretty positive. :) You didn't even suffer from fatigue which is amazing. I know there are some that didn't...and you were one of the lucky ones.
Thats pretty encouraing to here you had the 10 nodes and are already three years old and NED. Wow. That is fantastic! I had five positive nodes...so I know they want me to do it.
I too was concerned about getting lymphedema in my right arm from Rads. But I see your swelled a bit but went back to normal. I suppose I can't worry about that as we can all get lymphdema a month after surgery to 10 years from now. The main thing is to increase our chances to kill the beast.
Thanks for your post. All of you have been helpful. I have some new questions ready now for my Rad doc. I like it when I am more prepared on what to ask. Thanks to ALL of you.

Chelee

[lu ann]

They have councelors who are very knowledgable and could councel you to make the right decisions. I read one of your posts stating you have an HMO. That is what I'm hearing from many to be a problem. They know you are stuck with them. Just please call CTCA and talk to someone. You might need them in the future and will have the info you need to get the care you deserve.

My husband and I were amazed at the treatment we received. We arrived there on Monday. We had all the scans, tests, etc. repeated and by Thursday the Medical Oncologist, Radiation Oncologist, my husband and I were sitting around a conference table. They explained everything in detail with us of what I had and their opionion of the best way to treat. I started rad. treatment one week later.

It has been 2 1/2 years since dx. of recurrance. I have been on treatement for all but 14 months. My disease is stable and I am living a good quality of life.

It doesn't sound to me that you are being unreasonable about your treatment. There is a saying the squeaky wheel gets the oil. Take Tom's advice and go in there with knowledge as your ammunition.

I have been treated by 4 different oncologists and 2 different rad. oncologists. I went to my origional oncologist from 15 years ago when I had a recurrance 2 1/2 years ago. I found many mistakes in a letter she wrote to another provider. She also took a personal phone call from her husband just as she was about to give me the results of the biopsy of my spine. My blood pressure was at stroke level. I took my records off the door and read them myself while I waited for her to come back into the room. My husband was pissed off to say the least and found her to be very unprofessional.

I heard from a friend that she had an abnormal mamo and had to have a biopsy. It was benign, but I think she learned a little about what we all go through.

Even though I had excellent treatment at CTCA, I decided not to go there for chemo. I chose a provider 10 minutes from home who was a very good doctor. He took the time to explain everything to us. Even so, we decided last year to go to University Hospital in Cleveland where I can be involved in clinical trials. We have been very happy with the provider and staff.

Just hang in there. You sound like a very intelligent woman. If you can change to a PPO in the future, do it. You might have to pay a little more in premiums, deductable, and co-pay, but it will be worth it. Cancer Treatment Centers of America accepts most plans so talk to someone there even if you can't go to them now for treatment. They will send you a bunch of material, including a video and an inspirational book free of charge.

God Bless You.
Lu Ann

[Bev]

Hi, you have an unusual case, so I think a second opinion is in order. I followed up after chemo by 3 weeks. They do need a week for simulations. There are probably plenty of people who have had a larger delay due to complications from chemo. Getting it right would seem to be more important than getting it early.

When you have it on the left side you have potential for damage to heart and lung. Also rib breakage. The cancer side effect I think would be leukemia. My impression is that would occur 20 years down the road if it does.

Other than sunburn. I had no side effects, no fatigue.

I only had lumpectomy, so I think they would have taken me out to the back alley if I decided against rads.

Hang in there, you're 1/2 way thru.Bev