Uterine Papillary Serous Carcinoma: What treatments did you have?

@polkagal, My gut felt everything you wrote about checkups. I have friends and family who have known me 60-70 years but none of them knows what you and @goldengal know about what I have been through. That goes for what I know about you too. That CA-125 number is the first thing I look for in my lab work too. My oncologist has also said that she doesn't worry about a two-point difference. She looks for the number to be within a window frame. My 3-month checkups don't actually stress me out as much as noticing something in between those times and making more appointments. Once I was bleeding again vaginally from my dilator. Last month I ended up having a CT scan after feeling daily "pings" in my pelvic area. The result was that I'm working on gut issues now. Luckily these instances are definitely not cancer recurrence but those times are so stressful that when it's a regular checkup I feel much better going through the process. You are both in my prayers. I hope that you sail through your appointments and sleep more peacefully again. Sleep is such an important part of our healing.

tha

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.

@goldengirl2 -- I admire your stamina for your daily activities! Good for you. For fundraising, I'm taking part in the Nov. 2-3 education day and National Race to End Women's Cancer (doing the walk) for the first time this year. It's organized by the Foundation for Women's Cancer in Washington, D.C. You can find info about it and the organization here: https://www.foundationforwomenscancer.org/events-courses/national-race-to-end-womens-cancer/ I'm thinking that this organization is our best hope right now in funding studies for advancements in this area. I'm combining the walk with East Coast family visits. For breakfast, I eat steel cut oats with berries, ground flax seeds, chia seeds, psyllium husk and home-made nut milk. Fifteen of my daily supplements are Turkey Tail mushrooms (Coriolus) and eight are Reishi Gano 161 mushroom supplements. I truly believe that they will prevent a recurrence of UPSC along with a healthy lifestyle. Last month I had a scare with rumblings in my pelvic area but that turned out to be some GI issues so I just added some more supplements. Most of the supplements are for energy, immunity and now gut issues. I'm hoping to reduce this amount because it's very expensive but I will follow my integrative doctor's recommendation to take Coriolus and Reishi for two more years.

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 =)

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!