Radiation?..or Not?

cinnamon · Regular Joined: 02 Nov 2009 Posts: 22

Hello to all. I am a 46 yr old male. Just finished with chemo for Hodgkin's in the areas of the neck, and the group of nodes behind the chest plate.

After 4 cycles of chem my oncologist had me go through a PET Scan. Everything, thank God, came out clean! Great!?...yes it is, HOWEVER...

as a follow up my oncologsy asked the I consult with a specialist about radiation therapy as a follow up. During the consultation it seems that with the therapy comes a slight risk of cancerous tumors down the road as a direct result from the radiation therapy.

I am told that I am clean now...or at least as clean as a PET Scan can pick up on. So I have a dilemma I wondered if others have faced...

Radiation gives me a better chance of Hodgkin's not coming back. However, it gives me a slight risk of damage due to the radiation. Any input from those whom may have been faced with the same dilemma? I honestly am not sure of what to think. Seems like I have to weigh the odds either way?

thanks in adavnce for your input.

ChemoMan · Posted: Mon Nov 02, 2009 3:05 pm Post subject: Re: Radiation?..or Not?

Hi cinnamon

This is a decision for you to make. The Oncologist had already weighed the risks and benefits and decided that radiation would be wise. Now its up to you. I suggest you study this up and take any questions you have to the doctor. If you are unhappy with this you can also seek a second opinion.

You can start your study here:
http://www.medscape.com/viewarticle/704616

Congratulations on the results of the PET scan Very Happy

Good luck and all the best. Very Happy

_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

cinnamon · Regular Joined: 02 Nov 2009 Posts: 22

ChemoMan...the study was very helpful although it confirms what my Oncologist tells me...That the science on radiation therapy is as clear as mud. (Gotta love the way my oncologist words things!...lol)

So what it basically boils down to is that I have a decision to make that includes weighing everything out and choosing the road that I feel provides the best benefits with the fewer risks.

One thing seems to be clear with all the studies...there is an increased risk of stroke, future tumors, and in my case, heart damage, since one set of lymph nodes that had Hodgkin's is situated right there next to the heart.

On the other hand, there is a risk that there are still cancer cells floating around somewhere that the PET Scan could not pick up on.

It seems that my Oncologist was right in the fact that everything seems clear as mud.

Are there any folks on this forum who have had Hodgkin's and been faced with this same decision? What did you do? What swayed your decision? How many years has it been since you made your decision? How have things turned out for you?

SingleDad · Posted: Tue Nov 03, 2009 8:58 pm Post subject: Re: Radiation?..or Not?

My decision was far easier than yours.
My onco wanted what he called the Full meal deal.... Rolling Eyes

Chemo including spinal and radiation - the latter two purely prophylactic.

Now my lymphoma was in a testicle so radiation was limited to that area and the other testicle which does have some risk attached.

Had my kids and clipped already - was kind of funny listening the ESL physician warning me about "can have no more kids" - got old after the 4th warning.

I was surprised at after effects of radiation....more than I thought...like an internal sunburn.

Your situation with your location......tough call and you are younger so longer to develop radiation impacts and your internal organs will be engaged with it.

Tough decision.
I did like the "mop up" concept...that aspect of it I was onside with ....the main decision was the heightened risk to the second testicle but the mop up also was influential and of course that 100% the reason for the spinal.

It IS murky as to how much the prophylactic treatments benefit down the road.

Good luck....the first BIG hurdle is passed.
_________________
Age 61
Diffuse Large B cell Lymphoma Stage 2/3
CHOP+R started Feb 26th 2009
Completed 6 cycles June 2009
Diary here http://cancerforums.net/viewtopic.php?t=12003
Officially in remission July 9th 2009 Wink

Three rounds of Intrathecal completed July 29th
Radiation to come as a prophylactic measure.
1st Radiation Sept 9 - 17 does completed Oct 1.
No more treatments scheduled
Heading to South Africa in January - once the itching stops Mr. Green

joepet · Senior User Joined: 18 Dec 2008 Posts: 286 Location: Japan

Hello cinnamon. Sorry you had to join the club, but glad that you found us.

It was NHL for me, but I had an easy time in the decision (actually, my onc made it for me) to do extra chemo in lieu of radiation. My tumor was in my sigmoid colon close to the rectum, a rather delicate place where radiation would do a lot of collateral damage to the nerves, and a lot of words like "impotence" and "incontinence" (or was it "incompetence"? I hope not!) were thrown around. If it works, I'm glad to have avoided radiation.

As you had the nodes in a couple of places, it sounds like they would have to do the radiation over a somewhat wide area? My own opinion is that the bigger the area the radiation needs to cover, the greater the risks and the lower the chance that the radiation will be what puts you "over the hump" of remission. I can offer you no study that verifies that, just the feeling I get over what I've read about over the past few months.

Tough call in your case though, I can see the logic in either decision. This is where I would probably go along with the opinion of the onc that I trusted most, and let him/her earn those big bucks they are pulling in!

Good luck, and I hope that either decision leads to permanent remission!
_________________
Age 37 (36 at diagnosis)
Diffuse Large B cell Lymphoma
Stage 1AE (localized in colon)
Began six cycles of R chop 21 3rd Dec 2008
Finished R chop 21 Apr 2009
Complete remission as of May 2009

cinnamon · Regular Joined: 02 Nov 2009 Posts: 22

I have made my decision this morning. NO RADIATION...several reasons..

1) increased risk of future tumors due to radiation

2) Prone to possible strokes due to radiation being done to the neck area.

3) One node to be hit with radiation would be in my throat area and since my father and great grandfather both died of throat cancer then I feel my chances of cancer coming up in that area due to the radiation would signifigantly increased.

4) The nodes behind my chest plate are smack dab next to my heart...I am told by the specialist that there is a slight risk of heart damage due to the location of this set of nodes.

5) While I hated chemo, my body reacted very well and very quick to it. 4 full cycles and everything is gone as best as we can tell with a PET scan. I feel like my body was strong and was ready for battle so in turn I am hoping it totally cleaned itself of this horrible thing we call cancer.

6) I know what I face if the hodgkin's comes back. I know what I could face if the radiation causes something down the road and I know the risks either way. I think this gave me enough courage and education to make an educated and reasonable decision.

When I made my decision this morning I felt a "peace" and calmness come over me. I have promised myself to have no regrets based upon the fact that there really is no right or wrong answer to this damn dillemma. Not going to look back and not going to constantly look over my shoulder waiting on something to bring me to my demise. I have vowed to only look forward and to look at my experience as a blessing, in a wierd sort of way.

Wow!....I think i feel better already!

SingleDad · Posted: Wed Nov 04, 2009 8:41 am Post subject: Re: Radiation?..or Not?

well done - indecision is brutal
_________________
Age 61
Diffuse Large B cell Lymphoma Stage 2/3
CHOP+R started Feb 26th 2009
Completed 6 cycles June 2009
Diary here http://cancerforums.net/viewtopic.php?t=12003
Officially in remission July 9th 2009 Wink

Three rounds of Intrathecal completed July 29th
Radiation to come as a prophylactic measure.
1st Radiation Sept 9 - 17 does completed Oct 1.
No more treatments scheduled
Heading to South Africa in January - once the itching stops Mr. Green

ChemoMan · Posted: Wed Nov 04, 2009 3:05 pm Post subject: Re: Radiation?..or Not?

Hi cinnamon

Congrats on making your decision and I am glad it is making you feel a lot better.

Heres to many more trips around the Sun for you Very Happy

_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

aisha1 · Posted: Wed Nov 04, 2009 4:32 pm Post subject: Re: Radiation?..or Not?

Well done on the decision. I am also in the same boat.

My haemetologist has held a meeting about me today with some others, he told me that he is going to discuss whether I require the full 6 courses of chemo, and whether they are giong to give me radiation as well.

Same as you, it would be in my neck AND chest, right next to my heart and I don't like the sound of it. I told him that, and he said "Well, let's see what happens after the meeting".

Hope you are doing well.
_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

cinnamon · Regular Joined: 02 Nov 2009 Posts: 22

aisha1 - Doing fine here, thanks for asking.

It was a very hard decision for me, one that took over a week to make. I researched medical journal articles, got the input from folks on this forum, and also made out a list of my family history.

I finally laid everything out in front of me on the living room floor and took a while to take it all in while weighing out my options and percentages. After that I just sort of sat on it for a couple of days and let it run through my thick skull...LOL

The radioligist specialist, when I consulted with her, was very pushy. She put a certain degree of fear in me. Then I decided that I had a decision to make for myself. My oncologist was very helpful. I have learned to trust her over the time I spent under her care. I re-consulted with my oncologist and she made it clear what the percentages were, what the advantages were, what the side affects could be, and then she reinforced that this was a decision that I would have to make since in her opinion the science of it all is about as clear as mud.

I am at peace with my decision mostly because I made it after I felt like I had educated myself and weighed out the percentages of everything in a very thorough manner. Have I made the right decision? Only time will tell. However, I refuse to second guess myself or else I fear that I will live in fear. And to tell ya the truth...I;ve been through enough fear and anxiety over the last 8 or 9 months.

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