question

lostinthefog

So since i last posted it has been confirmed that i have grade 2, im 25 years old, recently married last aug. and have never had children. some things im concerned with is that my doctor is wanting to wait 6 months before even considering to do surgery. in this time i have been in survery pain in my pelvic area and keep being told that this should not be happening but nothing is being done. i have also been into the er multipul times for this pain. less then a month ago i had a d&c to remove 3 masses in my uterus and i was starting to do better but about two weeks after the pain started to come back the er preformed an ultrasound on me and found that the lining in less then a month had already thicken way above normal. my oncologist is also wanting me to lose a drastic amount of weight which makes sence, but how am i supposed to ignore everything that is going on for the next six months, the doctors are not even planning on checking up on me or do any sort of testing until then. im not going through any sort of cemo or radiation only a hormo treatment. i guess my questions are theses, Has anyone eles had this kind of pain? if so what helped subside it?"perfer not to have to take anymore pills would rather know what is causing it". Is it normal for doctors to want to wait a long period of time with out any check ups? greatful for any advice i can get.

Kate-caregiver

I am so sorry for what you're

I am so sorry for what you're going through, especially at your young age.  It is troubling that your pain is not being addressed.  Are you seeing a gynecologic oncologist?  I hope so.  It sounds like it's time for a second opinion.  You deserve answers!

lostinthefog

Kate-caregiver said:

I am so sorry for what you're

I am so sorry for what you're going through, especially at your young age.  It is troubling that your pain is not being addressed.  Are you seeing a gynecologic oncologist?  I hope so.  It sounds like it's time for a second opinion.  You deserve answers!

kate,

yes i am seeing a gynecologic oncologist, i have finally been able to get an appt with him this week, im hoping for answers but i have been informed that surgery at this time is not an option, there are so many things going on, i have continued to still have the bleeding though not as suvere but it is there. i feel as though my quality of life is not there, im so tired all the time and the pain is hard to push through at times. my oncologist is a brilliant dr. but i feel like he just gave me my diagnosis and sent me on my way to deal with things on my own. im so lost and my family just keeps telling me to be positive and keep my head up but so many times i feel like giving in, i feel like im drowning in my own emotions, anger, denial, depression, worry. so many things have happened that its just hard to breath at times.

shush_silent

progesterone?

You said that you were only on hormone therapy.. is it by chance "megace" also called megestrol acetate or some type of progesterone? The reason I ask is because this slows down the growth of the cancer cells.. I could go deeper into detail, but I don't want to bore you if it's not the same thing you're talking about!

lostinthefog

shush_silent said:

progesterone?

You said that you were only on hormone therapy.. is it by chance "megace" also called megestrol acetate or some type of progesterone? The reason I ask is because this slows down the growth of the cancer cells.. I could go deeper into detail, but I don't want to bore you if it's not the same thing you're talking about!

yes, im on progesterone

yes, im on progesterone, i been on it for almost two months and it is megace, i take 80 mg daily. my oncologist did explain that its supposed to help with bringing down the amount of estrogin my body has been making, he also had me on an iud but as of today my iud is mia. they had be do an ultrasound to see if it is still inside. ive been having new symptoms that im not sure are normal and when i ask my oncologist about them he just continues to tell me he is only an ONCOLOGIST. mind you i think he is a briliant dr but everytime i try to go anywhere eles to figure out the problems i am having such as , suvere pain, and now my heart rate is elevated and i was running a 100.2 fever which i normal run about 96/97 degrees. the other drs just send me back to him because they dont know what to do.

shush_silent

sounds familiar

I don't want to bore you with a novel ... but...Here is my experience and maybe it'll help..

I did the megace for a year before surgery...after being on it for a good solid 3 months, the bleeding.. the cramps.. the vomiting.. the passing out.. blah blah you get the idea.. all came to a stop!! So give it time.. they might have to adjust the dose before they get it right.

On the plus side..for me... the lining that was growing rapidly, actually started to decrease, not by much... but enough to notice. The tumor, which at the time of removal measured

19 x 16 x 11.5 .. stayed that size for almost the entire year. It had only increased by 1/2 a cm.

There were valid reasons for why I had to wait so long for surgery, I was severely anemic... with a hemoglobin at 4, I couldn't afford to prick my finger much less get through surgery. Also I was a newly diagnosed diabetic.. if that's not under control, you risk having massive complications during recovery. My point.. and yes, I do have one.. is that the megace DOES help "buy" more time, if you will, until the doctors get your "other issues" under control.

I promise you, I went through the same anxiety you did... with a million and one questions.. why are we waiting, wont the cancer spread, what if we wait to long and it goes to the lungs, or other places.. why aren't they as concerned as I am???

I hate to use this analogy, but it's all I can come up with ... megace is like "fix-a-flat" it doesn't take the hole out of the tire, but it gives you another few miles till you make it home.

Keep doing the things the doctor suggests to prepare you for surgery.. losing some weight, and any other advice he gave you. Walk, as much as you can tolerate.. and yes, I know that's asking a lot when you're in pain, but it does help..(after the first couple days of whining about it HAHA)

Drinks lots of water.. I know, it sounds absurd, but the more hydrated you stay the better your body responds to things!  

Sending gobs and gobs of good vibes your way!!