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Is Radiation really needed?

kaymn
Posts: 3
Joined: Oct 2009

I have hodgkins lymphoma and I am halfway done with my chemo treatment right now. After 2 cycles of AVBD I found out that I was in remission, but my doctor is still talking about radiation after my chemo is done with. What is there left to radiate, if I am in remission already? I have done a little research on radiation and it just scares me with the extra long term side effects and higher risks of breast cancer, as I am only 21 years old. I am just curious to hear peoples thoughts and experiences with radiation and the long term side effects? Thanks :)

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alleycat42's picture
alleycat42
Posts: 16
Joined: Aug 2009

hi kay,

im sorry i dont really have an answer to your question...but... in my opinion, i am thru 6/6 cycles of R CHOP and although i wont know for awhile what the next step will be. all i read about radiotherapy is not good and i was origionally advised by my first oncologist in spain not to have it, if possible. as i say, it may not be opted for at all but if it is i will be geting a second opinion, thats for sure.

at least, you have some time to concider it more and come to the best decision, i wish you the best of luck with that... please post what you decide... you will be helping a fellow soldier in this battle (isn't that what the whole thing is about?) :)

again, good luck. patrick

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Hi,

Nobody can make the choice for you, it is all very personal as well it should be. What I can share with you is my experience.

I did 6 rounds of CVP & Rituxan and then Rituxan maintenance. After the 4 cycles of chemo I had a PET can that showed remission. My onc and I discussed radiation after finishing the chemo and he thought at that time it really wasn't necessary and of course I was tired and didn't want any more treatments, so I chose No to radiation.

I finished chemo in August, and when I went back in December I told my onc that I was feeling like I did before so he did another PET and I did have another spot come back. So we did watch and wait for 9 months and the Rituxan was keeping it from growing, but it wasn't going away. So then he recommended rads.

I did 17 rads and it killed it. I have been in remission ever since. I can't help but wonder if I had done the rads right away if I wouldn't have relapsed.....but you can't look back. Look forward.

I have had some some problems....my rads were left groin and it DID put me into menopause....(not a bad thing) but the dryness has affected my sex life. I am working on it getting better. The problems I have may just be menopause related and I am adjusting.

I don't regret the rads...remission is a very good thing.

I hope this helps. Take care of yourself.
Beth

kaymn
Posts: 3
Joined: Oct 2009

Thanks for all the comments, I will be getting a secong opinion as my cheom comes to a close. I will keep you updated on what I decide.

-kay

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

Kay,

This is a tough spot to be in. I can tell you, that almost all radiation oncologists will swear that HD can be cured with rads whether alone or complimentary with chemo. It makes me crazy because I was faced with the same decision as you.

First I opted for rads (back in the 80's, they didn't know then what they now know about late effects). Unfortunately, I developed new disease in another area, so instead of screwing around, they hit me with chemo. After 3 or 4 cycles, I was told I was in remission. Even before I started chemo, I had been told, the plan was 6 cycles of MOPP-ABV (hardly used anymore because of its toxicity), and then either an additional 2 cycles, or radiation. I'm not sure what the rational was ( I didn't ask, just figured they wanted to make sure it was gone forever). I actually chose the chemo only because what the heck, I'd been through 6 cycles already.

You have every reason to be concerned about the rads. The only thing I would pass on to you, is that treatments have changed. Yes, there could still be late side effects, but the treatments are so much more fine tuned, and use waaaayyyyy less amounts of radiation with still the same success.

If time is available to you, this is where second opinions usually come in handy, but ultimately it's up to you.

A final note - I recently saw my radiation tech for the first time in 20 years. She was glad to see me, but as we talked, she found out some of the lasting side effects that I did have from the amount of radiation I had. That is when she stressed to me, how much things have improved, less exposure just as much if not more, success.

Paul E. (Hodgkoid2003)

DennisR
Posts: 148
Joined: Sep 2009

Hi Kay,
Sometimes the Chemo alone is not able to find and kill ALL the Onco genes that may be hiding out in nodes, blood, or Bone Marrow, depending upon which cells are involved.
A combination of Chemo followed by radiation, which uses a Chemo marker to attach to Cancer cells which in turn makes the rogue cells identifiable and vulnerable to the radiation treatments is often prescribed especially in recurrant cases of cancer.
Radiation however, much the same as Chemo, does tend to kill non-cancerous cells at the same time, probably moreso than Chemo alone, depending on the protocol, and does seem to add to the side effects or possible problems later in life like increased risk of Leukemia, or cataracts, or other cancers.
The bright side of the Rads is that they can be directed, more or less, specifically at known cancer tumors, or used as a "Full Body Radiation" to "Burn the field", as it is in BMTs to kill all the cells in a patient's blood or marrow.
Personally, with hindsight, I wish that I had done the Radiation as well as the Chemo, the first time I was DX'd, perhaps then, I wouldn't have had to have a recurrance. Who Knows?
DennisR

DenJ
Posts: 26
Joined: Oct 2009

I was diagnosed with NHL and have been through 6 treatments of R CHOP. When I first talked to my ONC he said that years ago they would always use radiation along with Chemo, however they have discovered that Chemo worked best by itself. I , too, would get a second opinion but I am in remission and never had radiation. Good luck to you,
denJ

DennisR
Posts: 148
Joined: Sep 2009

Hi DenJ,
I was DX'd with NHL in 2000, had resection surgery to remove the tumor followed by 8 sessions of R-CHOP Chemo, went into remission for 5 years, and was considered cured. 3 years later in 2008 I was DX'd with a recurring NHL.
The 2nd time was much more difficult and required a completely different regimin of Chemo Drugs administered for 8 sessions in a 24/7 drip procedure followed by a Stem Cell Transplant which required full body Radiation and more Chemo. An extremely difficult and frightening experience.
The problem was that once a cancer has recurred following R_CHOP it is considered resistant to the R-CHOP Chemo and that it will continue to recur, but with much shorter intervals between episodes.
I'm only telling you this because Cancer is a difficult, unpredictable disease and while we understandingly tend to want to take the easiest path in fighting it, it may not be the best thing in the long term. This time around I determined to fight it with every tool that was available to me, and at least I feel like I gave it my very best effort to defeat it once and for all.
Hind sight is great, but I don't know whether more Chemo the first time would have prevented the recurrance, but I always wonder about it.
Don't want to scare you Den, but forewarned is forearmed. Good luck.
DennisR

DenJ
Posts: 26
Joined: Oct 2009

Hi Dennis, thanks for the info. I do apprecaite any and all info that I can glean. I have done alot of reading about NHL and the various treatments and I am not disillusioned of what may be in store for me. I certaintly agree with you in that one should use any and all things at thier disposal to beat this. I hope you are doing well and you sound like a fighter.....good luck to you my friend,
Prayers, Den

melaniejill's picture
melaniejill
Posts: 11
Joined: Oct 2009

GET A 2ND OPINION!!!!!! SAME SITUATION WITH ME IN FEBRUARY AND I WISH I HAD GOT A 2ND OPINION.

PREPARE FOR HEADACHES YOU WILL HAVE FOR THE REST OF YOUR LIFE. ALL THAT ENERGY YOU ARE FEELING RIGHT NOW, LIKE YOU ARE 20 AGAIN. ITS GOING TO VANISH WITH RADIATION. ID RATHER HAD GONE THROUGH CHEMO TWICE THAN DEAL WITH THE CONSAQUENCES OF RADIATION.

THEY DONT MENTION PULMONARY FIBROSIS WHEN ITS STARTS OR THE TIRED FEELING YOU ARE GONNA GET ALL OVER AGAIN, THAT STILL HASNT GONE AWAY FOR ME 8 MONTHS LATER... THE SHORTNESS OF BREATH YOU WILL NEVER RECOVER FROM.. JUST GET A SECOND OPINION AND MAKE MAKE SURE YOU ABSOLUTELY NEED TO DO IT.

I DID THE RAD BECAUSE I HAD DEAD SCAR TISSUE IN MY LUNG BUT IT WAS THICK AND IT COULD HAVE POSSIBLY BEEN SOME ALIVE CELLS IN THAT MASS SO I HAD TO DO IT, BUT I WISH I WOUD HAVE WENT TO UCLA FOR MY 2ND OPINION. RADDIATION WILL AFFECT YOU FOR THE REST OF YOUR LIFE, NOT LIKE THE CHEMO.

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

A second opinion is always a good idea if time allows. Side effects are always possible, but not certain. Some people get them, some don't. There are several factors to keep in mind. And I'll say this as someone who has major issues due to radiation therapy.

Times have changed and improved since I was treated. You don't really hear the term "scattered field" any more as radiation is more finely directed. Also, they have found that remissions can be achieved with less dosages. These are huge factors in short term, and late term effects.

The other thing to keep in mind, is follow-ups. It is so important, and this is not something a cancer patient/survivor ever wants to hear, it is so important, that you are followed up for the rest of your life. My invincibility could have cost me my life. All because I didn't think I needed to be followed up after 6 years. Almost 20 years later, my cancer is still in remission (I call myself cured). But there have been things happening to my body over the decades due to both radiation, and chemo.

There is no doubt, that without radiation, I would not have enjoyed the longevity that I did.

But again, if you have the time, there is nothing wrong at all with pursuing a second opinion. With more info, maybe you can make a more comfortable decision. Please, do what's best for you and your remission.

Paul E. (Hodgkoid2003)

killbadstuff.com's picture
killbadstuff.com
Posts: 9
Joined: Aug 2009

It really does depend on the area that is being radiated. I was told that because my tumor in my chest cavity was so large to begin with, that radiation would help reduce the risk of recurrence. That said, the benefits outweighed the risks for me. I just finished my 2nd week of radiation and have only experienced slight fatigue and some redness of the area. So far, it's cake compared to chemo...so, it's definitely an individual-type thing.

killbadstuff.com's picture
killbadstuff.com
Posts: 9
Joined: Aug 2009

It really does depend on the area that is being radiated. I was told that because my tumor in my chest cavity was so large to begin with, that radiation would help reduce the risk of recurrence. That said, the benefits outweighed the risks for me. I just finished my 2nd week of radiation and have only experienced slight fatigue and some redness of the area. So far, it's cake compared to chemo...so, it's definitely an individual-type thing.

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