Uterine Papillary Serous Carcinoma: What treatments did you have?

Posted by goldengirl2 @goldengirl2, Oct 25, 2018

Is there anyone out there who has gone through the treatments for this? I have had surgery , and chemo taxes/carboplatin. Radiation is suggested but no one seems to have any data to refer to as we are such a small group I’m guessing. Very nervous moving forward as to what to do.

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@polkagal

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!

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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 =)

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@goldengirl2

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 =)

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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 🙂

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Amen!

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@embeth99

@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.

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What brand of supplement mushrooms do you use?

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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/

Coriolus_JHS

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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.

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@polkagal

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.

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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!!

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@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

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@embeth99

@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

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@goldengirl and @embeth Hope all is well with both of you ladies! Keep you both in my prayers. Coming up on another 3-month check-up in a few weeks brings everything to the surface once again. Everything seems to be ok and life is good, but who really knows?? Every ache or pain does make one wonder.

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@polkagal

@goldengirl and @embeth Hope all is well with both of you ladies! Keep you both in my prayers. Coming up on another 3-month check-up in a few weeks brings everything to the surface once again. Everything seems to be ok and life is good, but who really knows?? Every ache or pain does make one wonder.

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Thinking of you as well as we seem to be on the same 3 month check up schedule! mine is today and like yourself I’m great until about the week before then the old “ what if” kicks in but i’m good at distracting myself! just finished a cycling trip int the Pyrenees in france & spain. very conscious of my diet while away . sticking to plant based. use reichi mushrooms too. Blood results look good from what i see as i can check online. CA125 holding steady … your post made me smile just knowing you are out there thinking of us =}

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@goldengirl2

Thinking of you as well as we seem to be on the same 3 month check up schedule! mine is today and like yourself I’m great until about the week before then the old “ what if” kicks in but i’m good at distracting myself! just finished a cycling trip int the Pyrenees in france & spain. very conscious of my diet while away . sticking to plant based. use reichi mushrooms too. Blood results look good from what i see as i can check online. CA125 holding steady … your post made me smile just knowing you are out there thinking of us =}

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Your cycling trip sounds wonderful!!! As do your blood results and CA125. Hope the rest of your check up went as well 🙂

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@polkagal

Your cycling trip sounds wonderful!!! As do your blood results and CA125. Hope the rest of your check up went as well 🙂

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Hello again GoldenGirl2, congratulations on your cycling trip! So awesome for you to do that. I will be walking for you and polkagal too at the November 3 National Race to End Women’s Cancer in Washington DC produced by the Foundation for Women’s Cancer. I forgot whether you had brachytherapy but if you did, do you have urinary incontinance as a result? It seems to have worsened my iprevious ncontinence. My 3-month checkup seems to be in the midpoint of your meetings. So far I really look forward to them because my questions get answered and my fears are relieved.

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No brachytherapy for me.

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@embeth99

Hello again GoldenGirl2, congratulations on your cycling trip! So awesome for you to do that. I will be walking for you and polkagal too at the November 3 National Race to End Women’s Cancer in Washington DC produced by the Foundation for Women’s Cancer. I forgot whether you had brachytherapy but if you did, do you have urinary incontinance as a result? It seems to have worsened my iprevious ncontinence. My 3-month checkup seems to be in the midpoint of your meetings. So far I really look forward to them because my questions get answered and my fears are relieved.

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embeth99, good to hear from you! Good for you for doing the D.C. walk, and thank you. I had brachytherapy as part of my treatment, 5 sessions in between my 1st & 2nd chemo infusions. I really had no side effects, and no issues with incontinence. But I had no incontinence before cancer. I'm sorry you are dealing with this, it must be hard.

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I am new here. Was diagnosed with serous endometrial cancer in early 2011, stage 3C. It was only found during the surgery for a "common" uterine cancer. The serous endometrial cancer was found during the surgery in 3 lymph nodes. It had not shown up in the uterine biopsy pre-surgery. Had complete hysterectomy. Had carbo/platin chemo, no radiation. Following the chemo, my oncologist at the time urged me to stay on Aromasin by mouth as long as possible. I have continued on Aromasin now for 8 years. My current oncologist says she will not approve of continued use of Aromasin after 10 years as she doubts it would have any affect.

I would like to know if anyone reading this has been on Aromasin longer than 10 years, and what side effects have been noted. I am having some nerve related symptoms in my extremities, but don't know if they are related to the Aromasin, or something else, possibly Parkinson's.

I would also like to add this little footnote: My surgeon told me fairly recently that "they" had not expected me to survive this long. In fact, apparently they had not expected me to survive long at all after the chemo. He did not explain any further and I didn't ask.

But, dear ladies, I am still here at 82 years of age, 8 years post diagnosis. How much longer I will be around, I don't know. What I do know is that there is a God and He does miracles. So do your best at beating this, and pray.

Sent with love to each of you,
MiracleGirl

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