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Being railroaded into chemo.....

pedigrees
Posts: 1
Joined: Apr 2006

I was just diagnosed with Stage 1B cervical cancer this week. Haven't yet met with the chemo and radiation specialists, that's next week. I've been doing some research and nothing I've found has convinced me that I want to have chemo treatments. I am considering refusing chemo even though my doctor told me she wouldn't treat me if I did. She wants me to have chemo & radiation together, then brachytherapy, then a regular hysterectomy. I feel like all this should be my decision, not hers. I'm OK with all of the above except the chemo. I'm 45 years old and I've never wanted kids so the thought of a hysterectomy (even a radical) doesn't bother me at all.

All of the survivors I've talked to personally did not have chemo or radiation, but they all were diagnosed years ago when surgery was the accepted treatment.

Is there anyone out there who refused chemo? If so, did you later change your mind? If you didn't do chemo what treatments, if any, did you have? If you did do chemo how were your side effects? Was the treatment successful? Did you have to "doctor-shop" to find one that would listen to your needs?

Please tell me your stories - at this point I am considering no treatment at all if my only option includes chemo......

jplemmons
Posts: 6
Joined: Sep 2003

Hi...I don't know what kind of chemo your dr. is thinking about using. There are different side effects for different chemo drugs.

That said...I had chemo and radiation for stage 1b2 small cell. My chemo drugs were cisplatin and 5fu. I recieved the cisplatin and then the 5FU was infused for 24 hours a day for 4 days. I did this 3 times. I also had 5 weeks of external radiation and 68 hours of brachytherapy.

The side effects from the chemo weren't that bad. My hair thinned but didn't all fall out. I was nauseous for a few days after I completed the chemo treatments.

The side effects from the radiation are much worse. I had 3 months of diarrea and I was tired all the time. I ended up with scar tissue in my bowel and had to have a temp colostomy and bowel resection surgery. I still have a lot of discomfort during sex from the radiation.

Honestly....the chemo is not as bad as the radiation. Make sure your dr. tells you about all of the side effects from the radiation up front...short term as well as long term side effects. Apparenty, radiation damage continues long after the treatments. I haven't had any problems from my chemo!

Anyway, I hope this helps some.
jp

mstarrick
Posts: 5
Joined: Jun 2004

I was diagnosed in 2004 with Stage I B2 cervical cancer and was told by my team of doctors that chemo (cisplatin), radiation and brachytherapy was the way to go. I had the option of having a radical hysterectomy instead, but was told that my survival rate would be higher by going the chemo, radiation route and that there were significant risks with having a radical hysterectomy. Also, I was told that a lot of times patients would later need chemo and radiation anyway.

I have to tell you, the chemo was a breeze compared to the radiation. I had one chemo treatment a week for six weeks. Don't get me wrong, chemo was not a pleasant experience by any means and I definitely don't want to downplay the seriousness of chemo, but six weeks of radiation five days a week really took it's toll. Chemo made me feel tired and nauseous and I lost a little hair, but radiation gave me severe burns inside and stomach problems that were severe until very recently.

You always have the option of getting another opinion, or as many as you want, but I can say that I have been cancer free for 2 years and feel pretty good right now.

I hope you were joking about not having any treatment at all if you have to have chemo. I had a very minor form of chemo compared to the others I encountered in the chemo room. Those courageous people were being pumped full of chemo and no matter how crappy they felt, they still took the time to chat and ask how I was doing. Unless you have a death wish, you have to do what you have to do. None of us asked to have cancer and its just one of those things that you have to suck it up and let the professionals do what they do best. It will not be pleasant, but what choice do you have?

brysdoodlebug
Posts: 6
Joined: Jul 2006

chemo is different for different people- it was bad for me- i was anemic and very thin to begin with - although I was young, 29 when i was diagnosed- the things you hear about it were true for me, vomiting, mouth sores, thinning hair ( I got cisplatin, topotecan and 5 FU) drugs that just thin the hair- but some women were absolutley fine on chemo- even going to work after!! UGH

the other replies here are correct - radation is worse- and you never even hear about that - until you are the recepient-- long long lasting effects of scar tissue-- shrinks you bladder, your vagina, gives you unbelievable dirrahea, you even lose your pubic hair, and makes you so fatigued ( not tired) its a different feeling than tired--- i couldnt even lift a hair brush above my head to brush my hair- or lift a gallon of milk.

If you are uncomfortable with your docs suggestion- you should see another one- however I have done alot of reserach and everyhting I have read was right on the money with my docs treatment--- he did everything the research stated should be done even though it was traumatic- it saved my life and I was gratful to him for that - but by all means if you feel uncomfortable with your doc- see another one- because believe me- you are going to be seeing ALOT of them!!!!!
I had stage 2b- adenoncarcinoma (as oppossed to squamous cell)- had 5 weeks of external radation, 5 treatments of internal radation(brachytherapy), 8 months of chemo and a radical hysterectomy!!!! all by the age of 30 UGH!!!!
so hang in there please consider all your options

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