HELPx2

WayTooYoung · 01-19-2013, 07:14 AM

Hello ladies,

I am seeking counseling from anyone who's had radiation treatment 2 times. Please see my other post titled "Help" for more insight.

Since my second recurence last week....things have been a total blur. Yesterday I broke down and really cried. My oncologist sent me to go see my radioOnc just to be sure nothing can be done in that department. She said I would not qualify for surgery or radiation since I did not qualify for surgery last year when I had a recurrence. And since I already had maximum dosage of RAD, i probably would not qualify either due to side effects and dangers...well guess what? HE SAID he was recommending that I get the same amount of radiation for 5 weeks!!! For some reason, that didnt sit well with me....doesnt even sound right...I am scared, confused, and worried.

He is also saying that the best way to administer the radiation is to deliver it 2 times a day at 6 hours apart!!! I do not live close to this hospital at all and I would have to leave my teaching job. I feel so overwhelmed BC I have bills to pay...and worried about my future...what if it triggers second cancer!?! Or worse more scarring to my heart and lungs? ;(

Anyone with radiation experience??? Lost and confused more than ever!

sarah · 01-19-2013, 09:57 AM

you need a second opinion. Get the opinion from a different hospital and the top guy you can get to, let them now it's urgent.
I've only had rads once so can't comment on the twice idea however I know that despite the fact they say only once, it has been done more in certain cases but I don't know any personal histories.
I hope you have some good support and are taking anti-anxiety drugs or something. It's hard to be calm at these times.
Where is the hospital you go to? Maybe you can find a cancer survivor to stay with during this time??? so you don't have to travel twice a day and then get a leave of absence from your school.
big hug and love
sarah

yanyan · 01-19-2013, 11:05 AM

Hi WTY! Sorry to hear you are going thru a tough time! Local
Recurrence to skin and chest wall remains to be a challenge treatment wise. Two times a day radiation gives your healthy cells to recover as they are given in smaller dosage. You might have to take another chemo combo until surgery is an option. I hope you will find light in this cancer fighting tunnel. Lots of hugs

CarolineC · 01-19-2013, 01:58 PM

Hi WTY,
I was only maybe 2 months out of treatment for my earlier stage bc when I started having symptoms in my sternum and a 3cm lesion was found 6 months later. I thought when I saw my rad onc that he would suggest 5 treatments to alleviate the pain but he suggested 20 more in an adjacent area but part of it would overlap with the previously radiated (25 rads the year before) area. I believe he said to treat it aggressively since it was undetectable anywhere else. I also decided to have chemo again because although it was undetectable didn’t mean it wasn’t setting up shop. I am now just a year out from all that treatment and yes, it was very scary, and can’t we just have a vacation from Cancerland? It’s so exhausting to always be hoping to get away from it all, we have done our dues enough, we want the wind in our sails and to get on with a “normal” life.

I have been treated as oligometastatic, having limited affected areas. I don’t like the fact that it seems no one is helping you with sorting out all this information you’re being given and your lack of support from that oncologist. Have you contacted your provincial cancer agency to see what help you may be able to access financially?If you decide to do the rads you could possibly move to a local cancer lodge and have financial aid with the costs. Also, are you part of a union where you could be covered for short term disability? What about a breast cancer navigator at your local cancer agency? Or a counsellor to help you access any more help?
Princess Margaret Hospital has a radiation program and I found the number for an oligometastases program they run (I know yours is a recurrence, but it is still limited, so maybe they’ll have ideas) and you could talk to someone there. I ‘m not good at posting links but check this out -http://www.theprincessmargaret.ca/en/HealthcareProfessionals/ProgramDepartments/RMP/Pages/ClinicalPrograms.aspx. The contact name is Asanda Cheung at 416-946-2130.

In regards to any other treatment- shut the hormones down, at least for now, with shots and then you can take Letrozole (Femara), and are you at least on Herceptin? What kind of hormone therapy were you on before?

Anyway, I hope some of this information helps you.
Caroline

'lizbeth · 01-19-2013, 03:34 PM

Oh this is heart breaking. I will pray for you. I don't even know what to say. Am wishing for miracles and new circumstances that will allow you to receive all that you need.

Sending you love and support.

Becky · 01-19-2013, 05:25 PM

Get a second opinion to be sure. Waiting a couple of days won't hurt at all.

carolanno · 01-20-2013, 11:45 AM

Hi,

So sorry you've been dealing w/so much. my first recurrence was near my primary tumor (2.5 years later) and I had a second 6 wk course of radiation along with Taxol/Herceptin. i was cancer free for 10 yrs after that w/no adverse effects of second radiation. more recently, I had a mastectomy and my surgeon was a little concerned about the skin that had been radiated twice, but it healed well w/no complications. so I hope my positive experience helps to allay some of your fears.

Take care,
Carol

BonnieR · 01-20-2013, 01:36 PM

As others advised, get a second opinion. Just talking to another expert helps clear the air and offers clarity. You hear differently. And try some medication for anxiety. Ativan is my friend.
Keep the faith

WayTooYoung · 01-20-2013, 06:04 PM

Thank you all for chiming in. I will definitely ask more questions and try to see what other options are out there for me. Good to know some of you ladies have had RAD treatments in the same area and have not experienced much more complications.

I am soooo tired.