I have quit radiation. Stupidity? Suicide?

ganoobi

Half way through. My oncologyst talked my surgeon into NOT giving me a mastectomy because she said I would be getting radiation. I had a 100% neoadjuvent therapeutic response to the chemo. But, not only did i have a post surgical infection that put off radiation so I am starving for work, I also contracted erythmia multiforme minor as a result of radiation.

I also called my oncologyst today and told her I did not want to see her again. I had hormone treatment schedules (medicines) for her to prescribe. Is this suicide?

ganoobi

I answered my own question, I think. With my particular ER+, me being just 50, a medium grade tumor, and a larger tumor, I just upped my chances of recurrence by FIFTY PERCENT. See http://www.sciencedirect.com/science/article/pii/S0140673611616292

marijen

You can always change your mind. Going with your gut might not be a bad thing. Have you been to Deep Regrets? Anyways, I'm sure the doc is used to emotional cancer patients and won't hold it against you

Racy

Where are you being treated? Can you get opinions from other oncologists, surgeons, radiation oncologists? I would do that. I would also do hormone treatment.

It is important that you find doctors whom you trust.

ganoobi

Surgeons are elite and untouchable. When I had my post surgical infection (it was bad), I had to be hospitalized out of town and the hospitalist there tried to call my surgeon to no avail.There's some weird protocol that other doctors do not bother a surgeon's work. I tried to email him through my cclink and no answer. Even the day of my surgery he could not be found but once after and I guess he works the graveyard doing trauma in the E/R.. Before the infection I tried to tell my oncologist how bad I was feeling and she just sort of waved her hand at me and recently she told me in order to speak with me she would have to reopen my case since chemo has been over for some months. She has a care coordinator, too, who filters are her stuff. This delay, which my surgeon told me in a 2 month post surgical follow up appt made months in advance,this could have been avoided if someone had just given me antibiotics when I started to feel bad, has made radiation in the way of working and after so little state disability for so long and now it is out, i face another sort of immediate death by not working. The hospitalist at that other hospital did get a hold of my primary care who ended up drilling two holes in my breast to drain it over a couple weeks after several aspirations and massive vancomycin drips put just a dent in the infection. I was put on a third oral antibiotic.This delayed radiation by a month.

My new radiation oncologist felt my breast just as the infection was starting before I went in the E/R and she noted it was red and had a fluid sack in it an my temp was high and my heart rate was real high. She did not seem it worthy to call my primary care nor my surgeon. I am not a doctor. I do not know what the indicators mean. The radiation therapists and radiation oncologist saw this rash and I thought it was insect bites and told them as much. But I am not a doctor. and how was I to know? I showed this rash to my primary care at a pap smear appointment and he said "Why are you here today, for a rash or a pap smear?".

I was already depressed, super depressed, and I have been a cheery trooper through this whole thing. Radiation does other things to you they do not tell you about and the system and mechanics cannot help but be nihilistic by nature. My radiation is done at John Muir because they contract out the services to my regional hospital. It is like you are on a sushi boat, only the meat gets cooked.

I have taken work and I cannot get out of it. I spent my last favor from a relative and got lodgings near the radiation. I will not have those resources again. If I have a recurrence and have to do chemo and all that again I do not know how I will do that. I do not have the resources. What little I had in terms of the support of family and friends IN ALL WAYS was a one time deal. Very paved into a corner.

Federal SSDI rejected my claim and attorney intervention will not not fruit for at least a year. I also have a dual diagnoses of severe cubital carpal and was about to get that surgery when they found cancer, so we are just about a year into this and can only do light work because my hands go completely numb after about 20 minutes of doing anything that requires any sort of gripping and my hands are atrophying. Because of the rash, I am on steroids and antivirals and it makes me tired but it also gives me insomnia. So....I don't know. The radiation oncologist did not even call me to see what was wrong. I am just a number. I have been in the hospital four times for just side effects of treatment and there probably should have been a fifth when my hand received a chemical burn at the IV site. I got a bad fever, felt sick, and my hand peeled very badly and 8 months later still feel like still like cardboard a bit. My oncologist told me it was just a rash, and it was not. .Anyway, bitch bitch bitch.

It feels good to think I can go back to work, though. Avoiding all alcohol and losing half my body weight will reduce the estrogen. I was an after work drinker for 30 years and wonder if the DNA damage is already done and none of this matters, but ceasing completely will lower that estrogen. I weigh about twice what I should and that is another estrogen/prognosis factor. Chemo did kick me into menopause, so that will help. I worry too because the anti-estrogen medications cause endrometrial cancer and I have had atypical cells found in my lining in the past.

Leaning heavily into that 100% neadjuvent chemo therapeutic response I got and that my surgeon is very good at what he does and did get good margins. i have to say being this overweight helped with the chemo because I got a massive dose because I am so overweight, that is not a medical opinion that is my own opinion. But without radiation, even pathological N0's have remissions and of those that do from no radiation, by year ten one out of four dies by year 15.

ganoobi

UPDATE: the Radiology Doctor did call me today and I am going to continue because this is what she said:

There are three options: 1. We discontinue treatment and we watch very closely because it is highly likely you will have a remission.

2. You figure out a way to come here and we will work with that best we can. I wanted you to have (her words) 50 units but 46 will be OK.

OR 3: your surgeon goes in and finishes the job and takes your breast off.

I guess I am going with 2.

Salamandra

Ganoobi that sounds like such a nightmare experience on so many levels. I'm so sorry you had to deal with financial stress on top of health stress and aggravating doctors. I hope you're doing all right now