Just had my post op appt....pathology results..

Thanks Sarah....my husband was with me and the Dr just said there was a 15-20% chance of reoccurrence in 3-5 years cause it did go deep into my muscle but the keyword was "chance of reoccurrence" and that radiation treatments would cut that % rate in half . yeah my lymph nodes were clear and said the cancer didn't go outside my uterus just into the muscle

Hi, Michele,

I'm assuming that you had endometrial cancer.  Did they stage it for you? You said that the cancer didn't leave the uterus.  

When my cancer was removed it had infiltrated the wall 60%, so I had 40% of my uterine wall intact.  My doctor said I wasn't a candidate for radiation or chemo, but suggested I take a drug called anastrozole.  This drug completely blocks estrogen production in the body, and is mostly used to treat breast cancer.  Estrogen is what drives the growth of endometrial cancer, as well as some breast cancers.  

I took anastrozole for 3 weeks, but the side effects left me feeling as though I were 87, not 67.  Still, it's an alternative to radiation.  I see my doctor in a couple of weeks, so I need to talk to him about side effects and what else we might be able to do.

I hope this information helps.  Best of luck!  You're in my prayers!  Let me know how you get on. xx   

Hello Lynda. Yes I was diagnosed with endometrial cancer. When I had my total hysterectomy my oncologist said I had stage 1B and that there was a chance of reoccurance cause it was deep in the uterine muscle wall but he did not give me a percentage he just said he would recommend me to have radiology therapy but I didn't need chemotherapy. I don't know what to do.

Sorry I didn't get right back to you...I'm not a doctor, as you know, but because anastrozole totally blocks estrogen, which is what needs to be done in estrogen sensitive breast cancers, it might work for you.  This is because if you take it, you won't have any estrogen in your body to feed any estrogen responsive cancer cells.

Have you thought about getting a second opinion as to treatment?  It seems to me that this is a heavy decision to place upon you, especially because you really don't have medical knowledge.  

Did he explain the side effects of radiation to you? xx 

 

Hello again Lynda. Its OK for not getting back to me right away I am sure your busy too....😃 I have not thought about a second opinion and he didn't tell me anything about the radiation he said I need to ask that Dr he referred me to and he will explain it. I should have asked my oncologist what percentage was in my muscle. I read on Google that stage 1b it goes into half or more than half of your muscle but wish I knew what % mine was. Did your Dr give you a good prognosis ? I have always been afraid to die and when he told me about the reoccurance I was floored and I am still trying to process it......

Hello Lynda. I meant to ask you what stage did you have ?

Hi Michele,  

I was at stage 1a.  As for what chances of ay reocurrance, he wasn't really clear, or if he was, I didn't hear him.  My husband came with me, but he didn't take notes. I'll be monitored, every 3 months for the next two years.  He said in all the years he'd been treating endometrial cancer at my stage, he hadn't had many paitents in which the cancer had come back.     

He offered me the pills, because he thought I might be interested in taking them as additional insurance against the cancer coming back, but he said he really didn't know if I needed them or not. I wanted more certainty, so I asked him if he would offer them to his wife, and he said, he wouldn't.  But told me that I'm a different person than his wife...maddening.

I, too, struggle with fears of death.  But I do think that if one has tried everything and is weak and in pain death is usually welcomed as a friend.  It's only our ego that is terrified.  Our spirit knows it's going home.

So, I guess, for me, I'm just trying to take things as they come, and do what I can do.  I also learned that trying to stiffle my feelings didn't help me.  And, that though I was scared to death, I needed to sleep.  So, if you need help dealing with your feelings or sleeping, don't hesitate to ask for medication.  

I am praying for you! Please let me know how you're doing.  Send me a private message, if you'd like.  xx  

 

Hey Lynda......I have been googling everything and that's why I get scared like I do but my husband tells me not to believe everything I see on Google and wishes I would stop searching lol....

I thought stage 1A infiltrated less than half of the muscle and stage 1B infiltrates over half .....that's what confuses me....my oncologist said I don't have to do the radiation but he highly recommends that I do.

I have anxiety too and have medicine for that so that helps some. I just need to stop worrying so much.

My oncologist said that staging is on a continuum, and that lots of factors go into staging a cancer.  So, it's up to the pathologist.  One pathologist can be more um, conservative than another.  

I think that a patient looks to the doctor for certainties. I've learned that there really aren't any.  I was brought up to believe that doctors could give you definite answers.  They can't

I am somewhat comforted that they will continue to monitor me, and to do scans if they think necessary for 3 months every 2 years.  That way, if something develops they can catch it. Meanwhile, I need to get healthy, at least as healthy as I can get.

If you would like my opinion, if I was at stage 1B I'd consider doing the radiation, but I'd find out about all the side effects (including googling it) so I could have enough knowledge to pin the doctor down if he seemed to be dodging a question. Some doctors don't want to say anything negative, and just hope everything goes well for the patient.    

I think it's perfectly human to worry... BIG HUG for you, my dear! xxx 

I am definitely gonna do the radiation my husband and I just have to ask the radiologist how long can I wait to start cause I need to heal first and we know its gonna cost and we can only afford so much you know.....Google says the radiologist likes to start treatment 9 weeks after surgery to have a better success rate so idk

Good.  I'm glad you're going to do it.  Please let me know how you get on! xxx

I will Lynda and thank you so much for talking to me it has helped more than you know. Keep in touch.

I will.  Just remember that you can private message me as well.  I know that this is a crazy, stressful time for you! xxx