Radiation Side Effects

cdelaney

Sundanceh said:

Making Lemonade out of Lemons
Hi there

I normally post on the colorectal board - my name is Craig.

I look over from time to time since Joanne started this particular board. Your post on radiation got my attention - I just made a couple of replies to other posts on the same topic, so it's the topic of the day for me.

The answer to your question is YES. It will always be that way.

I had 25x treatments in the left and right hip and up the back end as well. The collateral damage has been enormous. It's been over 5 years now since I had this done and it is only getting harder to move around as the years pass.

Biggest problem seems to be when I try and bend over to put on socks and shoes or pick something up off the floor. Also, if I get down on the floor on my knees or try and sit on the floor and get up, I have a really tough time doing that - move like a very old man and need furniture to prop myself on to give me a hand.

I was only 43 when this happened - the radiation "aged" my body exponentially. I worry about the long time prognosis and what I can expect as I get older. It's a sobering thought.

Driving a car or sitting in a chair sometimes gets me stiff and I have to sort of unkink but then I can get going ok.

I walk on a treadmill and climb the stairs at work to try and keep as flexible as I can, so I don't get totally unable to do anything.

Reading your comments about bending and sitting really struck a chord with me. Everyone always thinks it's chemo - but it's RADIATION that does this and nothing else. I've talked about this on the colorectal board, but it falls on deaf ears.

It's nice to meet you BTW - I hope this post helps you some and lets you know that you are not the only one who suffers from this affliction.

If you run into something good, please let me know - I'd be willing to try it.

Kindest regards,
-Craig

Hi Craig,

Hi I also am 43 this year and the first time got lucky didn't require any radiation or chemo. This time doctor does not know yet Do you know if the treatments are any better? I get mixed reports saying that you only feel tired after first treatment now days and then you're fine, or am I going to still experience other side effects still?

Thanks,

Carey

KatLoop

https://csn.cancer.org/discussion/comment/784028#Comment_784028

Hi Craig,

I'm so glad you posted this as I'm not even 2 years post pelvic radiation and am practically crippled. I was completely healthy prior and I mean COMPLETELY! I'd not even one single ailment or medical condition or even bugaboo (except that I was born predesposed to depression and developed cyclothymia in my 30's).

It infuriates me when individuals post things saying they're lucky to be alive and the after effects are acceptable because they're alive, blah blah blah. The after effects are NOT acceptable and it's PROBABLY because so many people buy into chemo and radiation that we make NO progress in cancer treatment (even though "they" keep saying we do 🙄).

I got cancer of the uterus as a result of my Mother taking DES (diethylstilbestrol) and begged doctors for hysterectomy since I was 19 years old. They refused every time saying, "you might change your mind about kids". I think another side effect of DES is not desiring children and it might be a natural protection as it would have been impossible to carry a fetus to term.

I was diagnosed with cancer of the uterus, 1b2, at age 58 and AGAIN begged for hysterectomy. This time the response was, "we're concerned about clear borders so no". Well, during my 40 years of learning all about the cancer I KNEW I was eventually going to get, I'd learned to read imaging. The "clear borders" response was simply a big fat lie. There was NO sound reason not to do hysterectomy at ALL! They wanted money and surgery is simply not profitable to anyone but the actual hospital. I also researched treatments ad nauseam so refused chemo. The phone calls from them trying to talk me into it were relentless! I thought I'd fired the original onco-gyne but found out she was actually prescribing the dosage on my radiation and just before (had 2 zaps of 30 left) I was finished they pop up (quite dramatically and right before Christmas) with "you refused chemo so we have to do brachytherapy". Now THAT I had NOT researched.

They told me it was a simple procedure that would simply super zap any remnant of tumor and ensure it's complete demise. NOTHING simple about brachytherapy! It's worse than being octomom giving birth to 8 rusty radio towers and they do not give anesthesia. I BEGGED for something to kill myself with all four times. After THAT nightmare was over with they made me come back for four more external zaps saying that two lymph nodes had become infected with cancer as well.

I hopped out of that place on my last day, rang their stupid bell and drove ignorantly off to naively celebrate my life. I apologize to anyone offended but it IS stupid for ME as all I was ringing in was a lifetime of pure, unmitigated, unimaginable, unfathomable, and absolutely unexplainable HELL!

It started with profuse sweating and strange weight gain in my upper abdomen combined with inability to deficate unless I was standing straight up. I complained RELENTLESSLY to my GP about this and, like everything else one says to these "employed physicians" (they are merely cogs in a wheel now, essentially punching a clock, not healers, IMO) it fell on deaf ears.

There were NUMEROUS other bizarre issues that I'd complain of...same thing...fell on deaf ears.

I remember being highly annoyed that I couldn't get up from sitting on the floor or bending over to pick something up. I've always been so limber people think (thought) I'm double jointed or gymnast. I'm (was) just incredibly flexible. Could bend over with legs straight and put head between and behind legs and walk like that just for kicks and giggles. I can't even stand up fully now. The point is that there were soooo many issues foretelling the horrific damage done to me and soooo many things that could have been done, SHOULD have been done, to avoid or lessen the pending doom but NOOOOOOOOOOOOO! I have a PCP that is employed by one of those giants and he plain doesn't listen. He allows 15 minutes and boom appointment over. No phone contact, texts aren't welcomed. Just in and out. I don't think he's ALLOWED to actually treat patients. I get the feeling he likely has to do weekly reports and attend weekly meetings, like a sales representative would. I don't get the feeling of ANY caring or healing desire from ANY of these *employed physicians or specialists". They ALL watch the clock and make it quite obvious (to anyone that had a REAL Physician like I did for almost 40 years).

My very much loved Physician of 37 years retired JUST BEFORE I was diagnosed and I told him when he retired, exact words, "you've been the epitome of the Hippocratic Oath and you've gone out of your way to help me and others in your life. I guarantee that there isn't another doctor on this planet that could ever come close to you.". There were many words in between but I finished with, "you kept me well since I was just 20 years old and without you, I can almost guarantee I'll suddenly get diagnosed with a gazillion afflictions that are highly profitable and I'll never make it to old age". Not even a year later, boom, I'm out hanging to dry and shrivel up at the hands of individuals that acquired medical licenses commonly known as M.D.'s and specialists.

Apologies for the extended detail but I just have such incredible anger in me that these idiotic money grubbing "doctors" have COMPLETELY destroyed me that it just pours out of me.

I'll continue en pointe to original reason for my response to you.

As of today, April 20th, 2022, I'm completely free of cancer (🙄 my personal feeling) and completed "treatment" in January, 2020. BUT:

• On August 3rd, 2021, the reason for my strange belly weight burst forth as I lost 17 lbs. over three day of clinging non-stop to the toilet as horrendous Recto-Vaginal fistula made itself known and 17 lbs. of fecal material that has been backed up through entire tract painfully ejected itself from my vagina in plethora of colors and textures indicative of it having been there for MANY MONTHS. I'd complained incessantly to my GP who ignored it

• I have Recto-Vaginal fistula from radiation;

• I have Vesicovaginal fustula from radiation;

• My GI structure is an abomination and essentially dysfunctional from radiation;

• I have horrendous lymphedema (irreversible and untreatable) from radiation;

• I've lost much of my long, beautiful hair due to my GI tract being unable to absorb nutrients because of radiation;

• At 5'8 I've had a 46-22-36 figure my entire adult life and at 58 years of age was still modeling bikinis and sexy underthings for high end catalogs. I'm now between 90 and 102 lbs. and shockingly, horribly, skinny from radiation;

• I cannot eat ANYTHING solid at all unless I want to spend the next four days on toilet screaming in agony whilst consuming Norco and using lidocaine 5% liberally on all private parts due to radiation destruction of GI tract (solid food, even herbs, will NOT break down or digest...they come back out through all three holes fully identifiable).

• I cannot walk, even to take trash out or take my tiny dog for a walk due to neuropathy from radiation;

• I cannot stand up to take a shower due to spinal cord damage from radiation;

• I cannot feel my feet well but can "feel" the "numbness" from radiation;

• I have lost my job because of complete physical disability from radiation (I was only part time and on SSDI since 1998 due to cyclothymia but SSDI doesn't cover cost of living so HAVE to have part time job just to be able to live) and cannot get another as I'm almost entirely unable to function from radiation;

• I have lost my good credit as I can't pay my bills because of radiation;

• I've peripheral neuropathy throughout my entire body due to radiation;

• I have EXTREMELY low hemoglobin (often as low as 5) due to impaired ability to make it or to consume/digest iron sources due to radiation (this is likely what will end up killing me);

• Healthy of everything my entire life and a non-smoking, vegetarian, wine connoisseur, fitness buff, I suddenly have arteriosclerosis and erratic heart from damage caused by radiation;

• I now have such low blood pressure and O² sats that reading cannot even be taken due to damaged blood vessels from radiation;

• I'm completely intolerant of even mild cold or heat due to inability to control body temperature due to damage from radiation;

• My fingers, toes, even jaws, turn pure white and numb in even slightly cool weather due to circulatory damage from radiation;

• I can't breathe if I walk more than 10 or so feet without leaning on something. Even then, I cannot breathe well and have to stop continually. This is due to the incurable lymphedema caused by radiation.

• I've lost all muscle and strength in arms and legs and to even lift my 5 lb. dog is a challenge. This is due to inability to expend ANY energy on even basic exercises due to radiation. Doctors claim not to know why. I happen to LIVE in my body so I know why...it's because of the lymphedema. For most people it's necessary to be able to BREATHE in order to exercise (or walk, for that matter).

There's a LOT more but I can't keep typing.

NONE of these things can be repaired. I was ASSURED that ANY hazardous effects of radiation treatment would have shown up during treatment and addressed immediately. They kept telling me during treatments that "we see too much gas in intestines". I didn't feel any. My stomach was flat as could be. Still has 46-22-36 figure right through whole treatment. They told me at end that I came through perfectly. I idiotically believed them.

I gave up hope this month of ever getting better. My onco-gyne is a very well known professor and he doesn't listen to a single thing I say. I think he prefers teaching to healing.

I hope this serves as warning to those just diagnosed. Seek as many options as possible and demand surgical excision above and beyond ANYTHING else! IMO, for many tumors, it's what should be the first consideration. It absolutely should have been the ONLY consideration in MY case but these specialists are (often, not all of them) a greedy sort. Not just lust for money but they are in almost an exclusive little club amongst themselves. I've learned an ENORMOUS deal about cancer treatment in my journey. I'm still alive which is more than I can say about EIGHT of my friends/associates that have "met with the future" just since November (again , this is April 20th that I write this). The last (that I know of) to go was 62 lbs just before Thanksgiving when her onco prescribed MORE chemo and radiation to her! I literally begged her to come to her senses and not go through with it. She didn't listen to me. I don't think that she was thinking straight at all. She didn't make it through even one round but the hospital and oncologist (same one I went to) got their money.

One must really educate themselves well on these things. Especially now that our country is full of these massive medical associations with employed and motivated by bonuses, not healing, physicians.

We really screwed up our healthcare system badly.