Brachytherapy

Soup52

No, for sex, but it had been

No, for sex, but it had been difficult even before. That might have been my first sign of cancer, but I thought it was probably part of menaupause . I hadn’t used any estrogen even thoug my gynechologist had prescribed it. I was too paranoid about blood clots as I had had one before. Alas no sex,but my husband has prostrate cancer and is on hormone treatments so it wouldn’t be happening anyway. I hated internal radiation but was willing to do anything to try to keep the cancer from coming back.

Kaleena

Long term effect

when I was first going for my High Dose brachytherapy in 2006, I asked what the long term effects were.  At that time they didn’t know.  All I was told was that I shouldn’t get pelvic (external) radiation because the effects would be more detrimental to me due to scaring so they opted with the HDR brachytherapy.  Well 12 years later I can tell you some of the long term effects.   Around 2014 (8 years after treatment) one of my scans revealed that I had on my left side hydrouretonephrosis.   It was caused by a blockage near my bladder which was caused by the radiation.  I had to get a ureter stent in which needed to be replaced or exchanged every 3 months.  That meant going under anesthesia every 3 months.  I did this for a year and a half until I was tired of doing that and met with a urologist who indicated he could reimplant my ureter into my bladder and bypass the blockage.  I had that done in Dec of 2017.  I started having pain and my PET scan showed some positive factors around my vaginal cuff but because I had a biopsy in 2014 they believed it was negative and would just watch it.  However I started having pain daily and at the beginning of 2018 I had another biopsy done at a different facility (left my gun/onc - long story) and they took it from a different angle and this one was positive.  It was at my vaginal cuff.  So I had surgery in April this year and again in June   

 

JMJJ3

abrub said:

Know what you are getting into

We considered brachytherapy for me following a vaginal recurrence of my appendix cancer.  However, the value was unknown; the potential complications not worth it, and we didn't do it.  You need to weigh what it will get you versus what it will take away.  For me, my husband and I are still sexually active, and I didn't want to lose a functional vagina for very uncertain benefits.  Each case and each person is different.  The ultimate decision is yours.  For example, I have a recurrence growing in me now; just had my scan and it's grown.  However, I'm comfortable (as is my dr) staying on watch and wait, tho he'd remove it if I wanted.  Another friend in a similar situation was advised to watch and wait, but she's insisting she wants her growth out now.

No, I haven't had brachytherapy.  I've read about it, and personally don't know that I would do it.  However, what is right for me is not necessarily right for you.  Ask questions; get information.  People here will jump in with their experiences.

Alice

Brachytherapy

Thank You Alice!! Im concerned now because I had my first low dose brachytherapy traetment on Friday. I have 5 more to go, each for 4 minutes. My Doctor said because my tumor was considered aggressive it would really decrease the chance of recurrance. there are so many things that I realize now I wish I did more research on. everything happened so fast between diagnosis, and surgery it still hasn't even sunk in yet that I have cancer. It is even wierd to type that!! I had a back injury from the surgery, and I honestly think the agony I have been in from that has overtaken everything else. Even when getting my first treatment, everything revolved around my back and how I would handle lying still for the hour the first appointment took. I did much better than I thought I would, didn't have any spotting after or pain and no burning when I pee like they said I might. My and my husband have a great sex life so it is very worrisome reading some of these stories. I can say that although the experience wasn't pleasant, it wasn't horrible either. The staff and my Doctor were so caring and considerate, I will most definately tell anyone who wants to know the step by step process with all details if they want to know how the first appointment goes. Thank You again!!! 

abrub

JMJJ3 said:

Brachytherapy

Thank You Alice!! Im concerned now because I had my first low dose brachytherapy traetment on Friday. I have 5 more to go, each for 4 minutes. My Doctor said because my tumor was considered aggressive it would really decrease the chance of recurrance. there are so many things that I realize now I wish I did more research on. everything happened so fast between diagnosis, and surgery it still hasn't even sunk in yet that I have cancer. It is even wierd to type that!! I had a back injury from the surgery, and I honestly think the agony I have been in from that has overtaken everything else. Even when getting my first treatment, everything revolved around my back and how I would handle lying still for the hour the first appointment took. I did much better than I thought I would, didn't have any spotting after or pain and no burning when I pee like they said I might. My and my husband have a great sex life so it is very worrisome reading some of these stories. I can say that although the experience wasn't pleasant, it wasn't horrible either. The staff and my Doctor were so caring and considerate, I will most definately tell anyone who wants to know the step by step process with all details if they want to know how the first appointment goes. Thank You again!!! 

You don't have to complete all sessions

Ask the dr to decide its value to you.  Having had just one session, the damage, if any, should be minimal.  You are responsible for deciding on what treatments you will have.  I quit my chemo after 7 of a planned 12 cycles; it wasn't worth it to me (and in my case, I don't think those additional 5 sessions would have prevented my recurrence.)  You're not too far into this to ask questions.  My goal is to encourage educated decisions that are right for each individual.

Alice

BluebirdOne

This thread came at a good time.

Hi all.  I had the full monty surgery July 26, from which I have recovered well. I am going for my consulation with the radiology oncologist this week. The are recommending three sessions, two days apart, of brachytherapy for my stage 1a grade 3 serous cancer.  This will be sandwiched in between my 2nd and 3rd chemo, which I have tolerated well so far. I reread the entire old thread about radiation and all that I could from current threads. I am torn whether or not to get the radiation. I had only microscopic cells remaining in the uterus, but I have LVSI, everything else was negative for cells. My other large concern was that when my incompetent gyne did my hysteroscopy, he assumed that what ended up to be a large cancerous tumor was a fibroid (assumption made with a magic 8 ball as he had no pathology) and he decided to remove it. The large tumor was partially removed (his notes read that he was sorry he didn't get it all, but he took as much as he could) and subsequently I was bleeding for two weeks post hysteroscopy, and how many cancer cells were bled into my vagina and other parts no one knows. Which brings me back to the brachytherapy. Had the tumor remained intact I probably would not have the brachytherapy, but I am concerned that there are cancer cells that won't be killed with the chemo. The NCCN guideline is with 1a you can have surgery, chemo but either radiation is optional. I am going to discuss this situation with my team in a few days, but I think I may have to have the brachytherapy, regardless.  

 

Denise 

Northwoodsgirl

BluebirdOne said:

This thread came at a good time.

Hi all.  I had the full monty surgery July 26, from which I have recovered well. I am going for my consulation with the radiology oncologist this week. The are recommending three sessions, two days apart, of brachytherapy for my stage 1a grade 3 serous cancer.  This will be sandwiched in between my 2nd and 3rd chemo, which I have tolerated well so far. I reread the entire old thread about radiation and all that I could from current threads. I am torn whether or not to get the radiation. I had only microscopic cells remaining in the uterus, but I have LVSI, everything else was negative for cells. My other large concern was that when my incompetent gyne did my hysteroscopy, he assumed that what ended up to be a large cancerous tumor was a fibroid (assumption made with a magic 8 ball as he had no pathology) and he decided to remove it. The large tumor was partially removed (his notes read that he was sorry he didn't get it all, but he took as much as he could) and subsequently I was bleeding for two weeks post hysteroscopy, and how many cancer cells were bled into my vagina and other parts no one knows. Which brings me back to the brachytherapy. Had the tumor remained intact I probably would not have the brachytherapy, but I am concerned that there are cancer cells that won't be killed with the chemo. The NCCN guideline is with 1a you can have surgery, chemo but either radiation is optional. I am going to discuss this situation with my team in a few days, but I think I may have to have the brachytherapy, regardless.  

 

Denise 

Brachytherapy

Denise- Wow you have had a lot to consider!

Brachytherapy seems prudent especially since you had the tumor cut and removed by your GYN who thought it was a fibroid! I wonder why considering the other presentation of your anatomy/ thickening of vaginal walls that the doctor didn’t just leave the growth for removal via hysterectomy? 

Glad you found a more competent GYN/ ONC. Brachytherapy has had some improvements since I had it in terms of helping to make it more tolerable with lidocaine numbing oigel and maybe something for anxiety.  

Lori

BluebirdOne

Northwoodsgirl said:

Brachytherapy

Denise- Wow you have had a lot to consider!

Brachytherapy seems prudent especially since you had the tumor cut and removed by your GYN who thought it was a fibroid! I wonder why considering the other presentation of your anatomy/ thickening of vaginal walls that the doctor didn’t just leave the growth for removal via hysterectomy? 

Glad you found a more competent GYN/ ONC. Brachytherapy has had some improvements since I had it in terms of helping to make it more tolerable with lidocaine numbing oigel and maybe something for anxiety.  

Lori

The doctor was an incompetent fool. Period. End of Story.

He never took me or my diagnosis seriously, made me wait 5 weeks extra because he was going on vacation, and even after the hysteroscopy he was talking out of his **** (sorry, I really hate this guy) that he got most of the fibroid, (my procedure was never supposed to be fibroid removal, just a d&c) and all was well. BEFORE ANY PATHOLOGY HE WAS BLATHERING ON AND ON.  When the pathologist rushed my results the incompetent doctor called me, shocked at the dx. That was when the realization hit my husband and I that he partially removed, destroyed, a very large serous tumor. I was horrified, as I has post procedure bleeding (cancer cells, I am sure) for two weeks. So I would not be surprised if I have a recurrence, it will be in the vaginal area. Ladies beware! So many bad and incompetent doctors. I won't bore you with my cardiologist horror story. 

 

On the bright side, this incompetence pushed me into seeking the best treatment possible closet to home which is Mayo in Rochester, and I am very, very satisfied at the major difference in the approach to my treatment. They are so professional, kind, caring and they will listen to every question you have for as long as you have questions. I am still in the middle of treatment but I do have peace of mind about my team which removes some of the stress of this disease. Trust, but verify. Another plus is that I have been treated almost exclusively by women. 

Denise 

ConnieSW

Oh, Denise,

what an absolute horror story. So glad you are getting quality follow up. I watched the Ken Burns program about the Mayo this week and was so impressed.