First meeting with the RO today...maybe I can't have rads??

pejkug3 · June 2011

I had a lumpectomy in January. All along the plan was to do rads. Today I saw the RO for my initial consult and he said due to the location of my tumor (left side, back on my ribcage, 3 o'clock position) that me may not be able to do rads.

I guess they typically use one type of rads (?) and he's going to try a sim next week with IMRT. But he's afraid that he'll hit too much of my heart. What the heck?! He said there is no way he won't get my lung and that I may have some pleurisy symptoms or fluid on my lung during rads that will go away once treatment is over. But the big part is that he's not sure he can avoid radiating my heart!

Surely I'm not the only one this has happened to. It hit me out of no where so I wasn't even prepared with my typical arsenal of questions.

I guess if I can't do rads, I just move on with my life and pray that I never recurr. He did say that he would have considered me node negative...I had 3.0mm of a 5.7 cm node (yes, CM) that was positive. My MO said that some would consider that node negative, but since I'm HER2+, it didn't matter.

Advice?

Anonymous · June 2011

My advice? Get another opinion....at a different center.

My 1.4cm tumor was left side, 2:30 position, near the chest wall and I'm having rads. My understanding is they always hit the lungs...although only supposed to be a small amount. I've had 21 of my 30 sessions.

CTMOM1234 · June 2011

Another lefty here -- mine was in 4 o'clock position and I had full breast and boost radiation treatments a little more than a year ago. I had my treatments in the prone (face down) position, maybe that is an option for you -- if not at your current place, then like previous poster wrote, I'd consider getting a second opinion at a different place. Best of luck.

edited to add that mine was close to the chest wall, too.

pejkug3 · June 2011

I did ask about the prone position today. He said no one within 200 miles of us does it that way. Is there a website where I can see what facilities have which equipment?

We're in a primarily rural area. But I could go to more metro areas where family lives. I have been told there is nothing near us with better technology. The University of Iowa is closest and it's 75 miles from me. This RO actually comes to my local hospital from there.

I'm garnering hope from you guys who are also lefties in a similar position. Did you end up using IMRT?

GabbyCal · June 2011

I urge you to get another opinion also. Some insurance policies cover travel expenses for people who do not have access to treatment they need locally. Your insurance company may also have arrangements with cancer treatment centers. Something to check into.

Would you be able to make a trip up to Rochester to Mayo Clinic at least for a consultation?

Either Mayo or your insurance company would probably know which centers have the newest equipment and treatment options.

BTW - I'm just finishing up external beam radiation on left side - cancer site was at 10:00.

Anonymous · June 2011

Get thee to a city, girl! If you have options to handle it where there is more recent technology and options, I think you'll be better off. This is your life you're talking about...I wouldn't gamble on the country docs and the old technologies.

BTW... I have heard that, like chemo, they usually want to start rads within 90 days of surgery or they may say it's too late. There's another poster here who has run into that problem.

Juliebell22 · June 2011

I had umx on left side on may 24rth. Meet with onco on june 24rth. Sounds like they want to do 5 months of chemo. 4 ac/every two weeks, 12 taxol/weekly, followed by 6 weeks rads. Havent heard anything about 90 days after surgery not being effective? My tumor was 6 cm, also at 3:oo, left side. Drs want to put off reco, until I heal 6 months from rads. Am happy they are doing rads before recon! Would rather "clean house" so to speak before getting a new girl! Good luck all of you! Prayers and hugs!

Juliebell22 · June 2011

Also have read that bc cells double every 100-400 days, depending on grade type. Maybe thats why they say 90 days for either/ and/ both chemo and rads?

pejkug3 · June 2011

I'll be exploring options tomorrow. You guys have convinced me that this may not be a lost cause.

I finished chemo last week. Everyone I've talked to says that I should start rads within a month.

GabbyCal · June 2011

pejkug3 - Good to hear. I've been worried about you. I'll be checking back to this thread to see how you progress.

GmaFoley · June 2011

pejkug3: good to hear you aren't giving up - I would also like to encourage you to find your local cancer society - mine wrote me a check for gas money and traveling expenses for my whole treatment... The also gave me a gift card for the local grocery store...

Anonymous · June 2011

Juliebell22: Good point on the 90 day thing...could be that you have to start one of them in the 90 days. Perhaps the one who posted wasn't having chemo...don't recall.

First meeting with the RO today...maybe I can't have rads??

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