UPSC Recurrence

daisy366 said:

update - saw radio-onc
I am VERY pleased with my new radio-doc. Ivy league trained and very kind and accessible via phone and email. He said he has had success with UPSC and this location and cited a patient doing very well. I am very confident with him and my gyn-onc team. They both foresee success.

I was fitted with my (Darth Vader) mask yesterday and they took CT scans of my neck (supraclavicular lymph nodes)and marked the mask. I have to return next week for more marking and after the doc reviews scans he will decide what machine to use - there are 2 different locations possible depending on machine. Only disconcerting thing was, I had the mask on for about 15 minutes total while it hardened and they did the scans. It was strange to not be able to talk though I could still swallow. When the tech unclamped me I said, "You really know how to shut a person up!!" Later at work we joked that we could probably use several of these!!

Anyway, Starting Sept 28 the plan is:
1) low dose Carboplatin weekly
2) 7 weeks (35 sessions) of IMRT

Everyone seems to think I will be able to carry on normal activities though they cautioned me that I may have sore throat. I hope I will still be able to sing through this - but that is a small issue in light of everything else.

So, I shall carry on - Love to all, Mary Ann

daisy366 said:

update - saw radio-onc
I am VERY pleased with my new radio-doc. Ivy league trained and very kind and accessible via phone and email. He said he has had success with UPSC and this location and cited a patient doing very well. I am very confident with him and my gyn-onc team. They both foresee success.

I was fitted with my (Darth Vader) mask yesterday and they took CT scans of my neck (supraclavicular lymph nodes)and marked the mask. I have to return next week for more marking and after the doc reviews scans he will decide what machine to use - there are 2 different locations possible depending on machine. Only disconcerting thing was, I had the mask on for about 15 minutes total while it hardened and they did the scans. It was strange to not be able to talk though I could still swallow. When the tech unclamped me I said, "You really know how to shut a person up!!" Later at work we joked that we could probably use several of these!!

Anyway, Starting Sept 28 the plan is:
1) low dose Carboplatin weekly
2) 7 weeks (35 sessions) of IMRT

Everyone seems to think I will be able to carry on normal activities though they cautioned me that I may have sore throat. I hope I will still be able to sing through this - but that is a small issue in light of everything else.

So, I shall carry on - Love to all, Mary Ann

daisy366 said:

update - saw radio-onc
I am VERY pleased with my new radio-doc. Ivy league trained and very kind and accessible via phone and email. He said he has had success with UPSC and this location and cited a patient doing very well. I am very confident with him and my gyn-onc team. They both foresee success.

I was fitted with my (Darth Vader) mask yesterday and they took CT scans of my neck (supraclavicular lymph nodes)and marked the mask. I have to return next week for more marking and after the doc reviews scans he will decide what machine to use - there are 2 different locations possible depending on machine. Only disconcerting thing was, I had the mask on for about 15 minutes total while it hardened and they did the scans. It was strange to not be able to talk though I could still swallow. When the tech unclamped me I said, "You really know how to shut a person up!!" Later at work we joked that we could probably use several of these!!

Anyway, Starting Sept 28 the plan is:
1) low dose Carboplatin weekly
2) 7 weeks (35 sessions) of IMRT

Everyone seems to think I will be able to carry on normal activities though they cautioned me that I may have sore throat. I hope I will still be able to sing through this - but that is a small issue in light of everything else.

So, I shall carry on - Love to all, Mary Ann

Demodiva2 said:

UPSC Stage 1A Grade 3

Love this site, and all the terrific support it gives! I read it often, but haven't posted until now. Wondering if anyone out there chose no adjunctive therapy; hoped we could exchange experiences and ideas. I was diagnosed with UPSC Stage 1A Grade 3 in June of 2015, at age 66; discovered it due to several months of postmenopausal spotting, which finally prompted me to ask first for a D&C at my ob/gyn, hoping to find only fibroids; within the day, as soon as he'd looked at the tissues, he scheduled me for an onco consult asap. I had a full hysterectomy, along with fallopian tubes and ovaries removed; no lymph nodes taken out (but had declined a CT scan, so doc judged by "old school" methodology -- mainly visual. Knowing that I was going to refuse adjunctive therapy, and "go the natural route," I did not wish to undergo the excessive radiation of an abdominal C-T (had read on the Johns Hopkins site that it's equivalent to several hundred chest xrays.) My children are all grown; two live out on the west coast, as do my two young grandchildren. My husband is twenty years my senior, third marriage for both of us. 

I think you would get better response if you start a new post. I don’t recognize most of theothers on this post except for notime.

Demodiva2 said:

UPSC Stage 1A Grade 3

Love this site, and all the terrific support it gives! I read it often, but haven't posted until now. Wondering if anyone out there chose no adjunctive therapy; hoped we could exchange experiences and ideas. I was diagnosed with UPSC Stage 1A Grade 3 in June of 2015, at age 66; discovered it due to several months of postmenopausal spotting, which finally prompted me to ask first for a D&C at my ob/gyn, hoping to find only fibroids; within the day, as soon as he'd looked at the tissues, he scheduled me for an onco consult asap. I had a full hysterectomy, along with fallopian tubes and ovaries removed; no lymph nodes taken out (but had declined a CT scan, so doc judged by "old school" methodology -- mainly visual. Knowing that I was going to refuse adjunctive therapy, and "go the natural route," I did not wish to undergo the excessive radiation of an abdominal C-T (had read on the Johns Hopkins site that it's equivalent to several hundred chest xrays.) My children are all grown; two live out on the west coast, as do my two young grandchildren. My husband is twenty years my senior, third marriage for both of us. 

Demodiva2,

As Soup suggested, you might want to start a new thread.  This one is rather old and I am sure the ladies will respond.  

I know there are a few women who have also asked about getting/not getting the adjunct therapy, and I think the majority ended up getting it.  One particular women who chose not to get it has not posted in years.  I was diagnosed with UPSC, Stage 1A Grade 3 at 49.  I had both chemo and radiation and worked through it all.  Everyone has to make the decision for themselves and everyone responds differently to the therapy.   Unfortunately I cannot give you any insight in to natural therapy.  

As I belive Lou Ann says, "welcome to the club no one wants to be a member of".  It is a good group of women here and I am sure they will welcome you with open arms.

Soup52 said:

I think you would get better

I think you would get better response if you start a new post. I don’t recognize most of theothers on this post except for notime.

The reason you don't recognize most of the others is because at least four, possibly five or more, have passed away.  Daisy366, lindaprocopio, jazzy1, and Ro10 are all gone.  I'm not sure about one other, but I think she's passed, too, as I remember the first name as one that someone else on here mentioned to me.  Lindaprocopio was, I believe, the first member of the uterine board.  It's sad that some of those who gave the most advice are no longer with us.

NoTimeForCancer said:

pinky, sadly you are correct

pinky, sadly you are correct on us losing all of those ladies.  Someone sent me a PM berating me once for saying "they are no longer with us", when in fact, it was/is true.  I deleted that person's PM without replying.  When you are fortunate to be around for years, we mourn the ones we love, and certainly, these women were all part of our family.   

i definitely agree. I grieve for Helen and Debra Jo but I would hate not knowing. Three ladies on this thread other than the ones mentioned have also died. I remember them fondly and appreciate seeing their faces again when an old thread pops up. 

This is the unfortunate reality of our disease. No way to sugar coat it nor should we.