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Radiation after chemo...or not???? What to do?

Erin1414
Posts: 5
Joined: Dec 2009

Hi. I am 27 years old with a beautiful 9 month old son...I was diagnosed with stage 2 Hodgkins in August. I am a stage 2 but b/c of the same of the size of the mass in my chest (wrapped around my heart and goes up into my collarbone) my doc is treating me like a stage 4. I have been going through ABVD since Sept. I am getting 6 cycles over 12 treatments total...and just finished #9 yesterday. Now the question about radiation has been brought up.

My doc admits to being biased against radiation...he said he was trained by a lot of anti-radiation doctors and feels that the long term affects of it might not be benefical. He is sending me to radiation docs (who of course are going to be pro-radiation). So now I come on here to read about a lot of peoples radiation effects 40 years later. I know it would increase my chance of breast cancer (which my mother is a 5 year survivor from)...but I don't know about all the other effects. I don't want to have to deal w/ chemo and all that again...ever. Not in a year from hodgkins reoccuring or in 40 years when I get breast cancer.

So I'd like to hear about you all have to say about it...I don't know what to do!

JynxPhD
Posts: 11
Joined: Dec 2009

You didn't say if your tumor has shrunk significantly or not. My husband was diagnosed in Aug 09 with a mediastinal tumor that was 20cm x 20cm x 12cm. He has had 3 CT scans and 1PET since he started treatment. His tumor is down to 7cm x 9cm so he doesn't have a choice, he will be getting radiation (PET showed activity after 4 cycles). The radiation used today is MUCH safer than the radiation used in the past that all the secondary cancers are resulting from. Even if his tumor was smaller and we had the option not to do radiation we still would. I want him here now and we will deal with any secondary problems from treatment later IF they arise.

dpomroy's picture
dpomroy
Posts: 137
Joined: Dec 2000

I also had a mediastinal tumor that needed to be shrunk with radiation. My oncologist told me that Hodgkins, in particular, HATES radiation. Some people are treated with radiation alone.

I was also told that while Hodgkins is a highly cureable disease with a great prognosis for a long, healthy life, but that if they don't get it all - and I mean every last molecule - it comes back meaner, madder, everywhere, and very very hard to treat.

You will have long term effects from whatever treatment you choose, and effects from not choosing these treatments too.

I vote radiation. I'm biased. Mine came back and it's a miracle I am still here.

Erin1414
Posts: 5
Joined: Dec 2009

I was never told the original size of my tumor but my oncologist told me after my PET scan that was done after 4 cycles, basically the tumor was gone. Nothing lite up in the scan but there was still residual tissue there that could stay forever.

My oncologist also said it was very common to be thinking as you said above...wanting your hubby here now and will deal with whatever when it happens. Thinking it present day is totally normal but long term effects can be just as bad as cancer. So I'm still very confused. THanks for the info though...something I seriously have to think about!!

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

Erin,

Unfortunately, the only ones who will be able to make the decision as to radiation or not, are yourself and your treatment team.

Understand, radiation therapy has changed so much, even in just the 20 years that I recieved it. It is a lot more refined and defined. Where the radiation goes is much more restricted, body parts are protected more. A much smaller dose is used. Yes, doctors are either biased for it (rad oncologists) or against it. I did things backwards - I recieved rads first hoping that would do it, but ended up on chemo anyway. Still, the rad onc had talked (even five years later) about doing more rads. I made the decision not to. But like I said, you have to be the one to take that leap of faith either for or against.

I will tell you to be encouraged the fact that your PET shows such great results.

Paul E (Hodgkoid2003)

sassemink
Posts: 9
Joined: Dec 2009

I also did 6 cycles/12 rounds of ABVD chemo. I followed it up with 4 weeks of daily radiation. It was strictly directed to the area of the mass. My mass was 19 cm when discovered, and I was staged at level 4. I never questioned whether to do radiation or not. I don't think it ever crossed my mind to ask if it was an option. I had great faith in the doctor who was the primary physician in my care (still do!). Because my mass was over 10 cm, I was initially scheduled to do an autologous stem cell transplant, and stem cell harvesting did take place prior to radiation therapy. However, because the PET came back clean at the end of treatment, my doctor and all the other physcians he conferenced with decided we should freeze the cells in case there is a recurrence. The radiation treatment was the easier of the treatments to me. It was very carefully and directly administered. I had very little reaction to it. I do of course realize there is a greater risk of other illnesses due to the treatments, but as I lightly say, you have to get through the cancer to get to those other illnesses...To be truthful, there are not great choices in treatment of cancer. The ABVD has its own risks, but I couldn't tell the doctor no.

Erin1414
Posts: 5
Joined: Dec 2009

My doc is saying I have the choice to do the radiation because the cancer responded sooo well to the ABVD. And he doesn't think I need it...he doesn't think most Hodgkins patients need radiation. He said that research shows that if the cancer responds to the chemo alone that should be the only treatment given but b/c old school doctors have a hard time taking things out of regimen they just leave the radiation in....I dunno if that makes sense. Yes the possible long term effects from the chemo are there...just not sure if I want to add MORE possibly long term effects.
Where was your mass located?? I don't even know if that really even matters but mine is in my chest wrapped around my heart.

This is a very hard decision. If the cancer is gone after my 6 cycles of chemo then I want to be done BUUUT I don't want to be kicking myself in the booty in a years time if I have a reoccurance!

sassemink
Posts: 9
Joined: Dec 2009

My mass began on the mediastinum (sp?). I still have 5.8 cm of mass left..it shrank from 19 cm. My doctor never said radiation was an option...i don't think he's old school per say...he's my age...i was 38 when i was diagnosed. as a matter of fact, i began the whole blood work process this time 4 yrs ago. my heart was involved...left ventricle compressed and fxn at 37% with right side doubled in size trying to compensate...i wondered why i couldn't climb the stairs in our house w/o giving out of breath. i know what you mean about now wanting to kick yourself for not doing the right thing...i still wonder if i should have had the stem cell transplant then instead of "waiting" for it to return...that's always my fear. and one thing i've learned unfortunately is that the fear is always there when you go back for check-ups. i had my first scare recently when a lymphnode in my jaw area lit up on the PET. it has since rectified itself, and the mass left in my chest has stayed stable in size, but the SUV determined by the PET has increased over the last 3 visits. doc is not worried but says he knows i am, so he is putting me back on 4 mth visits instead of 6. I DON'T MEAN TO SOUND OFF-PUTTING because i realize how fortunate i have been to have had these years w/ my children (11 and 8)...but i look at it this way...if i have to do the transplant, i've had a break from the whole thing...has your doctor said anything about harvesting stem cells in case you ever need a transplant? hope you're doing well.

Erin1414
Posts: 5
Joined: Dec 2009

No my doctor has not mentioned anything about harvesting stem cells...but I have an appointment with him on Monday so I will ask him about it. I honestly dont even know what you'd do that for?!? I'm starting my last cycle of ABVD on Wednesday...I'm really hoping I have 2 treatments left and then I'm on my road to complete recovery! I've decided to not do the radiation...since my last PET scan came back negative I'm gonna take my chances and hope that the chemo was enough to rid this crap of my body forever! **fingers & toes crossed**
Hope all is well w/ you!

sassemink
Posts: 9
Joined: Dec 2009

i hope your visit went well...as to harvesting stem cells, it is in case there is a recurrence of the cancer, another lymphoma or leukemia...i will be able to do my own stem cell transplant. it was to be a "done deal" because my mass was so large and my disease so far advanced when i first began treatment. like you, my final pet was clear. my oncologist talked with his mayo collegues in fl, minn, and the lymphoma and leukemia society, and their consensus was to freeze the cells in case i need them one day...i got my diagnosis 4 years ago on march 8. most of the time now, it seems like another life time. i will encourage you to find a good support system. for me, the realization of what was happening/had happened didn't kick in until it was over, and i very stupidly told my husband of 16 years to leave...we have been divorced for 2 years, and we are slowly working thru things. but i overreacted from fear...i didn't want to unload all my fears on him while we were going through the cancer, and he didn't want to unload his on me...so you can see how we messed up...not trying to tell you my life history...just want you to be prepared for any stupid backlash of fear that you may face after your treatments are complete and you begin those 3 month visits...i think that's when i really felt most alone b/c i didn't get to hear positives from my doctor every 2 weeks...it was quite an adjustment for me...then too, i wanted to run away and pretend that it wasn't really me that had gone through all this stuff...my children (11 and 8) were all that kept me from doing that...and on bad days, they are still the only thing that keeps me sane...i enjoy reading your posts...let me know how things go...

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