Uterine Papillary Serous Carcinoma: What treatments did you have?

The checkups ate oh so stressful! Experience is the same I go into panic mode. My CA 125 went from 8 to 10 but doc assured me he’s not worried. ok i’ll go with that!! next check up is October so breathe easy and enjoy!!

Coming up on another 3-month check-up with 2 of my drs. Seems I just had one. Have been on edge, not sleeping well, a bit down...it's not that I'm dwelling on the possibility of recurrence, at least not consciously. Apparently I am, unconsciously. Had blood work done yesterday for the upcoming appointments, results available today, and all is well. My CA125 is 8. Very relieved and grateful! Praise God!!! Still need to have my exam and discuss with my drs of course. But for right now, I will take this. Praying all of you out there are doing well.

Sorry for the delay. My daughter was visiting from out of state. I buy JHS Natural Products Coriolus, Super Strength, 500 mg. (Turkey Tail, PSK) from my alternative medicine doctor. She says that it can be purchased from a sister organization, Mushroom Science, online. It's expensive but I really don't want to a recurrence of cancer. My doctor recommended that I take 15/day for 4 years after she recently did more research on it for lectures. https://mushroomscience.com/coriolus-super-strength/

What brand of supplement mushrooms do you use?

Amen!

Thank you, goldengirl, for sharing. I'm sorry there were times you felt more like a number. Nobody should be made to feel that way. We deserve any and all information our doctors can give us, including and maybe especially data and statistics that might back up decisions that are being made. As you and many others have said, this is all overwhelming enough. I know what you mean about the "dark places". You are right, every ache or twinge stops us in our tracks. I never had any pain or symptoms to speak of before this, so now when I do have an ache or pain, it really scares me! Sometimes, for me, it is the psychological aspect moreso than the physical that I find challenging. I am saying a prayer for you, that your sore armpits don't come as often, and just go away 🙂

By ’standard’ I simply meant that one of my oncologists kept repeating “that’s our protocol” that’s what we do for everybody but I felt they needed to know more about me and my lifestyle. They couldn’t answer why the cancer center where I had surgery recommended 6 chemo and they don't do radiation. I Indicated that if that was their protocol then I was trusting they weren’t sending all their patients home to die so why would my new place recommend it?thats when the only answer they could give me was “because that’s what we do.” It sounds like you had excellent care and I myself am very thankful but did feel like a number and not a person a lot of the time. I diligently did my own research and sought out a naturopathic oncologist as well for his input. I am going to try the mushrooms and I know to avoid sugar as ours is a glucose driven cancer. I’m happy to have found this sister hood as well. I too keep learning everything I can but it does get a bit overwhelming. My sore armpits seem to come and go and then my brain goes to dark places but happily I just get outside and distract myself in the garden or a game of mahjong with friends . I have read that others get that sometimes too . This chemo takes a long time to really clear effects and apparently late ones that haven’t occurred yet can happen. I am hoping all my weird little twinges and things are just that but it is disconcerting. However, life is good right now so I focus on that =)

@embeth99 @polkagal @goldengirl2 you're right. One does not need to be a Mayo Clinic patient to be part of the Mayo Clinic Connect community. Welcome to the sisterhood.

@polkagal--The mushroom supplements don't taste like mushrooms
I'm attaching a photo of the artwork I see first thing every morning. My friend's artist father did it. It contains the symbols for crisis and opportunity. I have decided to look at my diagnosis as opportunity rather than crisis. I have learned so much about health, quantum healing and gratitude in the past 2-1/2 years. I live in gratitude every day now.

Embeth & goldengirl, thank you for all you have shared! As I begin this post-treatment phase of this "journey", it is most helpful to hear about what others are doing. I also happened upon this site by chance, and was happy to find a sisterhood in others who specifically have my type of cancer. I have come across many blogs, but none specific to my experience, until now. I was not treated at Mayo either, so am grateful to them for providing this resource to us! What you both have shared tells me I have a lot of work to do, but I am headed in the right direction. I am not retired yet, but getting closer - I actually just celebrated my 60th birthday. Considering that last year at this time, I didn't even know if I would be here for it, I am very grateful! All that you both are doing in your retirement is truly inspiring! I have read about the positive effects of turmeric, flaxseed, & the mushroom supplements. Silly question but...do the mushroom supplements have any kind of after-taste? I ask because, while there aren't many foods I don't like, mushrooms is one of them. I struggle with breakfast as well. I have added some strength training to my yoga & walking regimen. I also have some issues with not sleeping well, so good to know about the guided sleep meditation app, I am excited thinking about trying it. I am also excited to hear about the women's cancer event in DC in Nov. I have family on the east coast as well, so am considering attending this. I am not much of a drinker, but do drink wine occasionally. My neuropathy is mainly numbness & some tingling now & then, I am fortunate that I have had no pain. Some days I think it is improving, then others it seems the same, so I'm not sure if it is getting better or I am just getting used to it? My drs have said it could be a good year post-treatment before it goes completely away, if it does. For me that will be end of Nov. Goldengirl, I think our treatment time was actually the same - mine was summer into fall, from Aug thru Nov., but for me this was school time as we start early Aug. Also, Goldengirl - you mention your concern about receiving "standard" treatment. Would you mind sharing what you mean? I feel I received excellent care, but who knows? As has been mentioned by many, the time of diagnosis is an overwhelming one, and we often don't have the strength or time at that point to research or educate ourselves. I feel I am learning more now, after everything has been done!