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Old 11-29-2008, 12:17 PM   #1
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Join Date: May 2007
Location: USA
Posts: 1,471
singer78 HB User
Question Too Much Radiation????

Long-time poster, here.
Simon on this board, has got me to wondering about how much radiation is too much.
I've been told by my Oncologist, to have ct scans every 3 months for the first 2 years. I'm a Hodgkin's survivor of almost 1 year.
I've also been given Pet scans throughout this first year, which, I assume is a considerable amount of radiation, too.
I was wondering if this is "normal" protocol?
I'm starting to get some pneumonitis symptoms back---and started wondering if too much radiation could be the cause.
I need to address this with my Oncologist, but my next visit is in January...after ANOTHER ct scan in January!
Now, I'm not so sure.
Feedback, anyone?

Last edited by singer78; 11-29-2008 at 12:19 PM.

Old 12-01-2008, 12:31 PM   #2
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Join Date: May 2008
Location: Bristol
Posts: 228
lymphpre HB User
Re: Too Much Radiation????

HI Singer,

I really did not intend to cause you to worry about this issue. In the U.K., there is an enormous demand for scans, so you would never get them at 3 monthly intervals. The reason trotted out is that there is a risk from the ongoing exposure to radiation, but that might just be an excuse for the fact that our health service simply does not have the facilities to provide such a regular service. In all honesty, I really do not know what is a safe frequency.

If they consider you are at risk of relapse, and a scan is the only way to detect it, that probably outweighs the risk from the radiation. Prof David Lynch, who is president of the UK Lymphoma association once said, in response to a question: make no mistake, if you have lymphoma, your biggest worry is the lymphoma. If a relapse were to happen, it is best detected early.

When I was first diagnosed 15 years ago, I had an intial CT scan, but no further ones. Consquently, they missed the fact that I had enlarged lymph nodes in the abdomen, which were allowed to grow for the next four years, until they were widespread throughout my chest and abdomen. If it had not become so advanced, the chances of me having a further relapse would have been far less. Regular CT scans would have picked that up.

It really has to be weighed up against the risk of something being missed though. My current situation is a bit different, as I would probably have ended up trying steroids for my breathing problems anyway because my PFTs have declined so dramatically, so another CT scan at the moment would be unlikely to change anything. I really do not know how much radiation is safe, and would be interested in the thoughts of other forum members?

Singer, please do not let me worry you unnecessarily.
Best wishes

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Old 12-08-2008, 02:59 PM   #3
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Join Date: May 2007
Location: USA
Posts: 1,471
singer78 HB User
Re: Too Much Radiation????

Hi Simon,

I'm sorry for the long delay in replying.
Right before I went out of town, I was having computer problems.
I posted a long post...only to lose the whole thing!
These computers can be touchy little things, can't they?

Anyway---no worries.
I'm not overly concerned, after I did a little research.
You're right about weighing your risks.

I feel I'm in good hands with my Onc.

Enough about are you feeling?
How's the breathing?


Old 12-09-2008, 09:58 AM   #4
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Join Date: May 2008
Location: Bristol
Posts: 228
lymphpre HB User
Re: Too Much Radiation????

Hi Singer

my breathing does not seem to be improving, despite the prednisolone. I can't help thinking they have left it all too late, as pred is supposed to be most effective when used early. Not only did they miss the signs and keep giving me the bleo, but even when they realised there was a problem, they just did not do anything about it. I must have had breathing problems for about 8 months before the pred was started.

The pred only works for inflammation. If you have genuine scarring/fibrosis, there is nothing that can be done about that. The worry is if it keeps progressing, which happens in about 5% of patients treated with bleomycin. I have repeat PFTs next tuesday, so will know one way or another.

Hope you are doing ok.
Best wishes

Old 12-09-2008, 09:39 PM   #5
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Join Date: May 2007
Location: USA
Posts: 1,471
singer78 HB User
Re: Too Much Radiation????

Hello again,

You must be very frustrated with the whole situation.
I've heard of the Bleo being hard on other people here, too.
It's very unfair, that they didn't seem to realize what was happening to you, before some possible damage was done.

Good luck next Tuesday.
Keep us posted.

p.s. yes, I'm doing well...other than a considerable amount of tiredness. It seems to come & go.

Last edited by singer78; 12-09-2008 at 09:41 PM.

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