Radiation/Scan Questions

EZLiving66

Yesterday at my six month appointment I had a long talk with my gynocologist/oncologist's PA about radiation, scans and chemo.  I asked her why they didn't do routine scans or recommend radiation for me.  She said that when my oncologist first started, he did do both those but as the years past, he could find no scientific proof that they increased life expectency.  Instead, it was the opposite - the radiation sometimes triggered other types of cancers.  And, the radiation was also causing some horrendous long-term side effects.

She said unless he couldn't surgically get all the cancer he could see he never recommends radiation anymore.  His five year survival is one of the highest in the country so I guess I'll go along with him.

She also told me my file came up while they preparing a report on chemo side effects and how to minimize them.  She said I had some of the worst side effects they had seen (oh good!!!) and asked me if I thought they could have done more to help me get through it.  After thinking about it, I told her probably not since I think most of them came from my liver starting to shut down and whatever happened to my brain that caused the problems on my left side.  She said I was the first woman they ever had who lost all her finger and toenails - they had some who lost one or two or who had developed ridges on them but that was it.  She also said chemo usually caused lower blood pressure and lower blood sugar but it was just the opposite for me.

She checked my port site and just shook her head said "What went wrong with this?"  I told her "Beats me."  Again, she said they rarely had problems with ports but thought maybe the high blood glucose kept it from healing.  I told her I thought it was like a line of dominoes.  One thing went wrong that triggered the next, and then the next, etc.  She agreed and said stopping the chemo was probably the best option instead of trying a lower dosage, spreading it out or switching chemo drugs because according to my GP's records, I was already in the second stage of liver failure after that third chemo.

Anyway, after I talked to her, I felt better about the whole ordeal.  I see my GP in a couple of weeks and she's going to rerun a lot of my blood tests to see if I'm back to "normal" and can get off some of my meds because they may be the cause of some of my lingering side effects.  I sure hope so!!!

Love,

Eldri

 

TeddyandBears_Mom

Eldri, It sounds like you got

Eldri, It sounds like you got a lot of information this time around. I'm glad about that!

I hope your next blood work is back to normal and that you can get off of some of the meds. You have been through so much.

Take care of yourself and thanks for sharing the information.

Love and Hugs,

Cindi

CindylovesMike

Oh Eldri

you have had quite a time of it. I have 2 fingernails that are very ridged and red with swollen cuticles since chemo, my onco said some peeps loose finger and toe nails just sounds like some really strong stuff to do that huh? I am worried about scans and the amount of radiation, I have had 6 cts and a pet since this all started in dec 2012. I was talking to the tech who did my last one he said something about 10 in a lifetime. I have another in Dec. I also talked to my onco about the supplements I had just started and he was against the milk thistle but said the curcumin would not probably hurt me but he did not think it would help. I have read so many places that it does fight cancer but there are some discrepancies about estrogen. My blood sugar also went very high with the chemo and I ended up on insulin which is making me gain weight. ugh.

I sure hope you get relief from the side effects you are having. My best to you.

 

Hugs, Cindy 

Charissa

Your post is exactly my

Your post is exactly my thoughts..." the radiation sometimes triggered other types of cancers.' I just started my 5 brachytherapy treatments today, but really wanted to ditch them. It was challenging for me to lie there and allow them to radiate that area. All I could do was pray and plead with the Lord to intervene and not cause further damage or additional cancer down the road. And, the thought of having to do CT scans every 12 weeks, seems like a bit much with the iodine and barium you have to drink. I have always been a relatively healthy person, eating good foods. All this goes against my previous lifestyle. But, then again, not sure how much good all of it did?  I ended up with grade 3 uterine cancer. I find peace in believing God is Sovereign (in control of all things).  All we can do is our best with what we have and our circumstances, the rest is in His hands. Blessings, love, and hugs to you, sweet Eldri.

janaes

Charissa said:

Your post is exactly my

Your post is exactly my thoughts..." the radiation sometimes triggered other types of cancers.' I just started my 5 brachytherapy treatments today, but really wanted to ditch them. It was challenging for me to lie there and allow them to radiate that area. All I could do was pray and plead with the Lord to intervene and not cause further damage or additional cancer down the road. And, the thought of having to do CT scans every 12 weeks, seems like a bit much with the iodine and barium you have to drink. I have always been a relatively healthy person, eating good foods. All this goes against my previous lifestyle. But, then again, not sure how much good all of it did?  I ended up with grade 3 uterine cancer. I find peace in believing God is Sovereign (in control of all things).  All we can do is our best with what we have and our circumstances, the rest is in His hands. Blessings, love, and hugs to you, sweet Eldri.

I had cancer 23 years ago and

I had cancer 23 years ago and had external radiation.  I have had two doctors tell me that i got this uterine cancer because of the radiation i got 23 years ago.  They are still planning on doing internal radiation after my chemo is done.  Ill be honest i havent decided if i want to or not.  if the doctors changed their minds and tell me i need external radiation at this point im feeling i wouldnt do it.  I surely dont want cancer again.  not caused by radiation anyways.

MAbound

It never hurts to push our doctors on these treatments

Some doctors just roll with SOP treating our cancers and it doesn't hurt to ask lots of questions and push them on their reasoning for going a particular route that has such potential for serious harm and future adverse consequences. Pelvic radiation scared me more than chemo because it's such a scattershot approach hoping to get tumor cells the chemo may miss. They don't know where they are or if they are, but since statistics say that ups the odds of cure, lets throw the kitchen sink at it never minding what life will be like afterward. I probably would have felt more comfortable with internal radiation because it doesn't penetrate as far, but I've got a gem of a gyn oncologist who takes time to listen, consult, and investigate and he's backing off from just going the automatic route with my treatment. The existing science and thinking in oncology changes so quickly I'm not surprised to hear that others are not automatically recommending pelvic radiation now. It's so hard to know what's best to do and then living with the decisions we make wondering if they were the right ones or wrong ones that we'll regret later. 

Soup52

I did have a scan before

I did have a scan before external radiation and was marked in the areas that would be radiated, so I dint feel like it was a shot in the dark. I know I am probably more trusting, but I just wanted to deal with whatever it takes to rid myself of this agressive cancer. Yes, I am dealing with after effects, but I'm hoping that it was worth it... I just feel there are no right or wrong answers; we just all need to handle it in our own way.

janaes

I agree soup.  I think we all

I agree soup.  I think we all need to do what we feel best for our own situation.

MAbound

Soup52 said:

I did have a scan before

I did have a scan before external radiation and was marked in the areas that would be radiated, so I dint feel like it was a shot in the dark. I know I am probably more trusting, but I just wanted to deal with whatever it takes to rid myself of this agressive cancer. Yes, I am dealing with after effects, but I'm hoping that it was worth it... I just feel there are no right or wrong answers; we just all need to handle it in our own way.

I do agree with you, too

Perhaps you misunderstood me. I was referring to the fact that there's the possibility of exfoliated tumor cells in the pelvis remaining after chemo, but because they're microscopic there's no way to know where to aim radiation precisely to be certain of getting them and minimizing harm to surrounding healthy tissue; thus it seems rather "scattershot". I'm trusting my gyn oncologist and want to be done with this forever, too. He seems pretty confident after my husband and I pushed him on the change in my treatment during our last visit, but it's taking me a leap of faith after I had pretty much told myself I had to do what I had to do. I will be quite anxious, I'm sure, in the coming years waiting to see what happens.