Final lab work in, not so good in Daily life

  • April 28, 2021, 7:51 p.m.
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  • Public

So I do have cancer.

Stage 1B endometrial stromal sarcoma. There isn’t a whole lot on this type of cancer as it is rare and if it comes back, tends to find another place such as the liver or lungs. Studies from 2019 to 2020 indicate chemo plus radiation. With treatment my survival rate is 50%, without 30%. The dr said if I want a second opinion, he would suggest Sloan Kettering. I might do that but I told him I want to start the process ASAP.

I am scheduled for a port next Thursday and chemo the following Monday. I can start treatment and stop anytime I want, obviously, as well as start treatment and still get the second opinion. I know no one can tell me what to do but I asked him his recommendation if he would give it to me and he said he would go with treatment. Again with second opinion, would treatment options be any different and his PA said not really because I flat out asked her if she would tell me. I also asked her if she knew of anyone who survived and she said yes. It was reassuring because all the research I had found was for stage 3, not much for where i am. This is because it is so rare and most of the people for the stage 3 diagnosis were in their 50s. The dr said i have a lot going for me, I am in good overall health, I look at least 15 years younger than my actual age and I have a good attitude (I did get some emotional it I didn’t fall apart in front of him, that came later at home). The best remedy for fighting the effects of treatment he said were exercise, even when I don’t feel like I can do, it but a simple walk around the block can do wonders and a good diet. I feel confident that he is telling me the truth because his wife has leukemia.

I will lose my hair but most of the time it comes back. The Paxman cool cap can be given to offset that but it is expensive and out of pocket. In addition, it isn’t available in my location for a couple of weeks and then staff has to be trained in its use. I don’t want to wait any longer than I have too.

I would still like to be able to move because even tho I will be going thru treatment and it will be hard, I think it would keep me focused.

I am sure I am leaving things out but am just too exhausted right now.

I haven’t read anyone but will soon, had to get this entry out.


Last updated April 28, 2021


coffeemate April 28, 2021

I’m very sorry this is happening.

ConnieK April 28, 2021

I found terry cloth turbans in a beauty shop for a friend with Stage 2 breast cancer. She liked them because they covered her head, were absorbent, and easy to slip on & off. I bought her different colors. If you can't find them, let me know.

Stage 1 is better than 2. You caught it early and you're not hesitating on treatment because you are way braver than you think or feel right now. I imagine David didn't feel brave when he picked up his slingshot, yet he prevailed.

We send you love and hugs and encouragement. At every turn, we will be in your corner. Know that that is happening right now and allow it to strengthen you. Our spirits will be with you on every step around that block.

Much love.

Queensuzu1 ConnieK ⋅ April 29, 2021

Not sure about scarves and turbans. I saw some baseball caps that had hair attached and I liked that idea. I am also going to get a wig.
Am trying to stay on the positive side with it being stage 1. There isn’t a lot of data out there and the majority was for stage 3 with a survival rate of five years. The dr didn’t say how long because as his nurse said, no one knows how long any of us have to begin with and she is right.
Thanks for your words and love, you always cheer me up. ((Hugs))

ConnieK Queensuzu1 ⋅ April 29, 2021

I'm just trying to make sure you keep your eyes on the goal. Glad I could help. :)

FitLadyDi April 28, 2021

Sending positive vibes and encouragement your way.

Jeepsy19 April 29, 2021

One day at a time. I completely support second opinions when it comes to cancer treatments and diagnosis. If Sloan Kettering is accessible to you, GO! They are considered a Center of Excellence. I had a client whose son had a very rare form of cancer and the only doctor they found with significant experience was at Sloan Kettering. He survived and is now in college and still goes to SK for his annual check up. Every other doctor they saw told them their son wouldn't survive beyond age 10.

Thoughts are with you and the fact that you're still talking about moving, and your future is such a positive sign!!

Queensuzu1 Jeepsy19 ⋅ April 29, 2021

Going to at least call Sloan but one thing about the hospital here is, it is also a teaching hospital.

Jinn April 30, 2021

I am so sorry . You are doing everything you can and that is positive. It’s great that you do have so much on your side . Incorporate that exercise . Get the second opinion if you can . Hugs!

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