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Cancer: Cervical & Ovarian Message Board


Cancer: Cervical & Ovarian Board Index


Ginger, I am so sorry to hear of all you have been through and appreciate your posting so that others can heed your words and get regular exams. I must say, however, that the amount of radiation given you seems an awful lot to me. It is hardly surprising that it messed up your organs in that area. I realy cannot say what would be an acceptable amount of radiation but I know of three people who have had other cancers, rectal, prostate and breast and each of them only had 5 weeks of daily radiotherapy. Even that took its toll, particularly on the the ones with rectal and prostate cancer.

I do hope you soon heal and regain some normalcy in your life. You are incredibly brave.

Take care,

Peacecircle
I had pelvic radiation, for another pelvic cancer. To give you some hope, I am 4 years post treatment and gradually started to heal. It did take about 3 years for my body to start bouncing back. My vaginal tissues were very dry and my rectal area burned terribly. I have used some meds, to offset the symptoms, but I gradually did improve. Hang in there. I know it's hard.
Ginger...I am so greatful for your posting. I am going through the same exact thing as you, I have 3 bags as well. However, my case is a little worse. I am still battling cancer. Like you I went through simular treatments for the cervical cancer. I was diagnosed in Oct 04. Since at the time I was 32 years old they said they were going to be as aggresive as possible and the cure rate looked good. The doctors said my treatments would consist of 6 weeks of chemo and radiation. One day a week of chemo and 5 days of radiation. At the end of that cycle I would have 2 internal outpatient radiation treatments. At the end of the cycle of treatments they found that there was still one area that that did not respond. So instead of the outpatient wand treatment, I had to indure the most barbarric internal treatment. I was admitted to the hopsital for 2 cycles of radiation. They insurted about 50 metal rods into my vagina. Each treatment lasted 2 days. It was the worse experience of my life. After all that....There were no signs of cancer! I was thrilled! I was happy to return to a normal life. Things were going great! My career was taking off and I was enjoying life. I went in every three months for CT scans and check ups and all was good.
My life changed once again in Oct 05.
We discovered a lump on the right side of my neck. Immediatly my doctors did a biopsy, CT scan, PET scan and MRI. Unfortunatly the lump tested positive for cancer. I couldnt beleive it! The good thing about the whole situation is that that is the only area in my body that had cancer. So the game plan was to do 6 cycles of chemo over a 6 month period. I still kept a positive attitude and worked for the first 2 months of treatments. I lost my hair this time but I got some great wigs. I am an outside sales rep so I filled my clients in on my situation since it would be odvious that look would be different. I received an overwhelming amount of support. Well during the chemo treatments I started to have blood and mucus in my stool and constant urinary tract infection type of symptions. I went to to a proctologist and had a colonoscopy. Thank god there were no signs of cancer however, they did find the beginnings of a fistula. The doctors were hopeful with suppositories, emimas and steriods that we could heal the ulcer. It didnt work. Also my bladder problem was getting worse. At 33 I was wearing depends because I was constantly leaking. I had a scope done on my bladder and luckly there was no signs of cancer. So they increased my dosage of steriods in hope to repair the radiation damage. Still enduring chemo treatments, I came down with viral meningitis. I was hospitalized for 2 weeks and had a blood and platelate transfusion. I had 1 chemo treatment left and the lump on my neck was no longer visable. A few days before my last chemo treatment was scheduled, the vaginal/rectal fistula broke through. I too had fecal matter coming out both ends. It was horrifing. My doctor immediatly scheduled me for a colonostomy. I was freaking out but again still kept positive thinking having the procedure done is better then what I was dealing with. The surgery went well however when they took out the cathater, I had absolutly no control of my bladder. They once again did a scope of my bladder and a day later they put in the nephrostomy tubes. After all was said and done, I was in the hospital for 17 days. My doctor subscribed 20 hyperbaric oxygen chamber treatments to help the fistuals heal. However my doctor said that the fistulas will never completely heal. After undergoing 10 treatments in the oxygen chamber, the lump on my neck started to surface again. So I stopped the treatments. The treatments however did seem to relieve some of the drainage. However, since oxygen helps to heal wounds it also helps to feed the cancer.
Well...where I'm at now is that I am leaving Las Vegas to return home to Denver. I beleive that I will receive better care there. Health care in Nevada is horrific. I started looking into alternative treatments for the cancer and the healing of the fistulas. I'm still keeping a positive attitude...although some days are rough!
Sorry for rambling on about my story but I hope that if you read this Ginger...it will make you feel a little comfort in knowing your not alone.
Keep a positive attitude! Since you no longer have cancer, you might want to ask your doctors about the hyperbaric treatments.
:angel:
Hello All :wave: I am overjoyed that this GLOOM subject is being heard,and thanks for all the prayers and well wishes from all :)

And Cool bag lady I have to say between the two of us we keep medical supply stores in business :rolleyes: I am so sorry the beast has resurfaced its nasty head,I guess you can say as of Sept.05 I have been cancer free,which is a blessing... But at what cost? I am ALWAYS paranoid and I mean ALWAYS paranoid the cancer will come back,somewhere and the damage the radiation did on me with the fistula and SEVERE damage to my bladder it seems a never ending struggle here.Is this qualty life? I ask myself... I guess time and God are the ones with answers :angel:

I am wondering how you are dealing with the tubes? they drive me insane!!!!!! they bother me way worse than the colostomy,I have never ending urinary tract infections my Dr. is debating whether or not to pull them so we will see :rolleyes: You know you and 1 more lady on another message board or the only ones I know that have these tubes,Please keep me posted I am here everyday.... they are stict on their rules here no websites or email exchange so we can bond here :) Take care Ginger
Re: Radiation cystitis- Radiation proctitis

-some one on another thread asked me if this was a side effect of radiation, I am new and not very good with this website. I hope I have found the answer in Ginger?? Cat Scans have been worthless to us, My husband was diagnosed with terminal base of the tongue cancer (still alive!!) but had lots of cat scans that never showed.
They are both side effects of pelvic radiation. They can show up right away or several years after treatment. I was treated with internal and external radiation and chemo and hysterectomy. My proctitis symptoms started during treatment. The proctitis causes uncontrolable diarrhea, and bleeding from colon. Three years out. The cystitis (evidently serious as per the urologist) causes gross bleeding, and terrible right back flank pain. Sometimes the bleeding is just one day , and three to four bladder emptying, then nothing for a couple days then the back pain and more bleeding. Cat Scan's show no growing abnormalities, (but they never found my late stage uterine cancer either). ANYWAY I was hoping someone had some helpful ideas, or experience.
:dizzy: I had my hysterectomy in 2002, Stage IIB, grade 3. 6 weeks (five days a week) external radiation, at the same time chemo once a week during the 6 weeks, then 3 internal radiation treatments, and then another "super dose of chemo" Burnt vagina, if thats what you can call it now. . Writing the date is actually a celebration, except the road has been undescribable. I have had uncontrollable diarrhea since the second week of radiation, a small fistula between colon and vagina..and now since the first part of this year bleeding from the bladder, every three or so days, with terrible right back flank pain. Lots of cat scans, a cystoscopy in April--the bleeding is way worse now, and an oncologist that got excited about it, and a urologist (or his front desk) who is "not concerned" just goes with my "serious radiation cystitis". Discouraged I guess, its hard to get excited about "nothing growing" when they never saw the cancer on a CT in the first place. Nothing compared to what you are going through. But sure is nice to hear from someone after all this time that really knows. Thanks
No tests, ever since the cystoscopy they just ignore me, saying it is severe radiation cystitis, my urine can be dark thick red, and they keep saying that, don't even have me come in. let alone do anything for the pain. Constant pain can make a person really grumpy at all times.:mad:
Hello everyone :wave:

Well I havent posted in a while,I swear I have had a zillion drs appointments :dizzy: I stayed in Houston this week closer to MD Anderson,I had over 9 appointments,Mon-friday Yikes!!!! I found out my surgery is going to be December 6 a FEW DAYS AWAY!!! I am a wreck I even have my own surgery team lol.As of right now I will find out Monday what exactly will transpire Wednsday,a possiable cystectomy all I know is that they have 10 hours blocked for my surgery!!!! Im scared but ready to get these dang tubes out of my back if that means another bag so be it!!!!

Todays quote by me "Cancer sucks,but radiation sucks even worse"

Kepp me in your prayers I will update on Monday....Ginger
Hi Ginger, I am reading your share and cringing, because the same thing happened to me only with vulvar cancer. I was Stage III but when I went into treatment they didn't give me any indication of what radiation might do to me: it fused my organs and did so much damage I am having to have radical surgery during which they will probably have to take the bladder and rectum and I will be in the same position.

I am really furious that no one even gave me a written piece on what could happen and what the risks of pelvic radiation were. I didn't think this could happen. I totally relate to your anger and betrayal.

I also thought I was clear. I had great CAT scan in June 2006 and then my skin was getting and looking better all along, then in November 2006 my gyn oncologist said he wanted to do a biopsy and they found cancer cells. Now I am suddenly in a situation of having to get this surgery. I am very upset.

Karen



Raditian has destroyed my insides i have 2 fistulas a messed up bladder and colon and hopefully with prayers they will heal and this awfulness of all these bags will be reversed!!!!!!
I needed to vent and warn and advise to all
#1) Go get your annual pap WITHOUT fail and a pelvic exam at least every other year.(wish I had)

#2) If your faced with cancer research it completely raditian is VERY hard on you Please PLease Please think twice about it ( wish I had)

Now thanks for reading and PLEASE pray for me and my family we are tired,stressed and I am hoping all of this wii heal and no more surgeries or required EXCEPT to reverse the colostomy and pee bags in my back!!!!!

I appericate your time.
Ginger :p[/QUOTE]





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