A common question we receive is about long term side effects

WhatNextEmails

Several people have asked about the long term side effects of treatment. Usually followed by the statement that they are considering not having treatment at all because of them.

So to alleviate these fears, what would you say are "long term" side effects, if you have had any at all? And knowing now what they are and their severity, would you still go through treatment.

It's a "risk/reward" situation.

LiveWithCancer

I was in treatment from 12/2012 until 5/2019 for stage IV lung cancer. Long-term side effects: I am still alive and living a good life (though somewhat secluded at the present moment...). I have to take a thyroid pill every day because the immunotherapy caused the thyroid to quit working properly. My stomach has some issues - i should, but don't, take a pill for GERD every day. I have constant ringing in my ears - I can't remember if I had that before treatment. It is a minor annoyance.

You can weigh your options. Without treatment, you are probably going to die. With treatment, you might have minor issues as I have or you might have neuropathy that makes life more difficult. You might have to have a voicebox like Greg ... his after-effects are more severe ... but read his posts and see if he thinks having no voice is worse than having no life.

JaneA

I suffer from vaginal stenosis (shortening of my vagina) due to the pelvic radiation for my rectal cancer. They advised me of the risk - about 50-50 percent of developing this.

I'm 5 years out and continue to be NED after my Stage IV diagnosis. One of the reasons that they do pelvic radiation for rectal cancer is to help prevent recurrence.

I don't regret my decision at all. I wanted to live.

po18guy

Honestly, I was never afraid of chemo. What I was concerned about was the cancer: there might not be any long term effects.

Today, it is highly dependent upon which chemicals are used, in which combos, if any, most or all of them are the newer biological drugs, the dosage, one's general health going in, etc. etc .etc.

If I make it to July, it will be 12 years and 20 drugs - discounting all of the prophylactic drugs, high dose steroids, chemo-modulatory drugs, total body irradiation and stem cell transplant. Except for the neuropathy (first because of Vincristine and secondly due to steroid-induced type II diabetes), I must say that life is pretty much indistinguishable from the aging process.

Most of what bothers me is a result of that transplant. Housing two different DNAs in the same body has its challenges. To sum up, I will paraphrase the Blue Oyster Cult:

"Don't fear the chemo..."

GregP_WN

I have never considered not doing the treatment. At my first Dx, I was only 28, that's too early to just lay down and die. For that matter, almost any age is not the time to just lay down and give up, but, I realize there are some that have no other avenue.

The treatment doom and gloom stories are blown out of proportion, it's not as bad as some people make it out to be. Some of those people are even people that have never had chemo or radiation. Don't tell me how bad something is unless you have been through it.

And PO, I hope you don't have a fever.....but we need more cow bell!

BoiseB

There are long-term side-effects to almost every therapy some people have them some don't, In some people they are permanent in others they subside, What bothered me was the Dr.s only discussed the immediate and temporary side effects. They didn't discuss the ones that might pop-up later. They didn't even acknowledge neuropathy as a side effect. Knowing the side-effects would not have caused me to reject treatment but it sure would have helped me to cope with the long term side effects when they occured

Lynne-I-Am

I was very aware of possible long term side effects from the chemo treatments I received but when you are terribly sick when finally diagnosed, you will do anything to beat the xxx cancer back and hopefully defeat it. I am six, almost seven years out now from frontline chemo. I have mild neuropathy in my hands. .My biggest lingering side effect continues to be chemo brain. As others have said you adapt and am I am very happy I am here to be able to adapt.

Mensacowgirl

I am different than most of you. The neuropathy in my feet has totally ruined my quality of life. I had to sell my show horse because I can't feel my feet and lower leg and that is pretty critical to effective riding. I am afraid to go hiking or biking with my husband because of it. I would have declined treatment if I had know this. I have no life now.