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A Mom and her daughter - Radiation

AMom
Posts: 4
Joined: Aug 2006

I am a Mom of a V.C. survivor diagnosed and treated in 1999. She had the gold std treatment at time as determined by NCI and Sloan Kettering Research Institute. This entailed 5000 total units of radiation over 5 weeks (morning and afternoon) along with once weekly Cisplatin chemo each week. About 6 wks later she had an added 5000 units in an implant over 24 hours.

The results of all this you can see - it will be 8 yrs in Jan and she is still alive. But she (and we all) have paid a price for it that you all should anticipate and be very proactive about!

1) Lots of damage in the groin area - her ovaries were cooked so she went into early menopause.

2) Bladder damage which i will go into later.

3) Groin lymph nodes destroyed so she has periodic cellulitis (staph infections). Lymph fluid builds up and forms nodes in vagina and colon/rectum that are extremely painful.

The damage is cumulative over time. One of the new things discovered (just 3 yrs ago) is that you MUST have HYPERBARIC chamber treatments as soon as possible after radition treatments end. This will help with radiation damage.

Bladder damage is significant and hyperbaric treaments help. The damage is constricted urethra and ureters which lead to pooling urine that is not completely voided and recurring UTIs. If you have an HMO you MUST force them to refer you to urologist as soon as possible and get checked for this on a recurring basis. It builds over time.

My daughter has ended up with interstitial cystitis, needs stents to keep ureters open, had to have urethra reamed out, kidneys affected because of reflux of urine and may have to have bladder removed! All because HMO docs did not refer her to urologist - you know too many referrals hurt the doc's rating! Also she was so sick of seeing so many docs for all the problems of radiation, that she wasn't proactive enough. The result is that she hasn't worked for almost a year and she is in constant pain that needs oxycontin and percoset. As a Mom, it has taken a toll on me - I feel her pain in a way that nobody else can.

She was stage III when diagnosed because incompetent HMO doc botched the diagnosis until she was admitted to ER and insisted on biopsy. Tell everyone who has young daughters to get the HPV vaccine.

Ask me questions please - let me say that the treatments saved her life but her docs didn't know or wouldn't say what to look for as each year passed.

AuthorUnknown
Posts: 1564
Joined: May 2006

Hello,

Thank you for sharing your daughter's story and your willingness to be there for other members. I am sure others will gain strength from your being here.

I wish you and your daughter the best.

Take care and be well,

Dana
CSN Dana

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