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UPSC recurrance notes - went to Stanford support group for gynological cancer

MaryAnnOnTheBay's picture
MaryAnnOnTheBay
Posts: 20
Joined: May 2009

Today, Thursday, I went to a support group for gynocological cancer at Stanford University Hospital in Palo Alto, California, near my home. As expected, the others were ovarian cancer, although the membership roster shows some uterine cancer, unspecified type. I asked the woman who added me to the roster to put UPSC, not uterine, to make it easier to identify others. Anyway, I don't think I'm violating confidence to say it was good for me to talk to people living with cancer, in various time frames of treatment. Of the six of us attending, one woman had a recurrence, and now has been NED for several years, I forget how long she said, I think she mentioned 2003, but I don't remember if that was first date or recurrance date. Recurrance was a couple of years later. So that would make it at least 4 years post recurrence. This made me feel good because I am on my first recurrence and my imagination runs wild. Others attending were either newly diagnosed, or fighting recurrence, or long past initial diagnosis with no recurrence but a breast cancer surprise. I was mindful of the Barbara Walters special on centagenarians where one woman (who was still driving her car) said she had had cancer three times. Type not specified.
I had my picture taken for the roster twice, once in my peach fuzz and once in my hot pink extra long head scarf, all with my dangling bird earings. The doctors have me on Cymbalta for my neuropathy and lorazapam to sleep at night and we are having very sunny weather, so I don't know what is making me feel good, but it's working. Mary Ann on San Francisco Bay

barb55's picture
barb55
Posts: 91
Joined: Jan 2009

After my chemo treatments ended, right before the radiation treatments began I met a couple of times with a therapist. She suggested a support group, but I didn't follow up on it. At the time, I felt that my fantastic group of friends and family was all the support I needed and I didn't think I could handle other people's cancers. Looking back now I think a support group would have been helpful-still might be- a safe place to share feelings with others who would understand. That is what this blog has become for many of us. Let us know how it progresses and once again, thanks for sharing Mary Ann and good luck.
Barb

woofgang's picture
woofgang
Posts: 12
Joined: Apr 2009

Barb, I felt the way you did about a support group, thinking family and friends had been so wonderful that how could I need more. But I found a Gynocological Survivors Group moderated by a social worker that's near home and meets monthly with interesting speakers, food, and plenty of time to share feelings, etc. I've been 3 times, and it's helped me alot. I really needed a group of women who could had been through the same thing, but once I discovered this blog, I was excited to know that most everyone has the exact same cancer. The survivor group is dominated by ovarian cancer and no UPSC. But I'm sure that's typical because there just aren't many of us. The support group still meets a need because you get to meet in person. Things like looking at someone's hair growing back, seeing the relief on a face when they've just found out they're NED - these are worth so much. If you do find a group, I recommend it.

God bless,
Sharon

Fran60's picture
Fran60
Posts: 24
Joined: May 2009

Good to read your story. I have just been diagnosed with a reocurrence of UPSC. It has invaded my lungs and a couple of small spots on my liver. I feel like there is a death wish as I know this is tough to battle. I had my first chemo yesterday 5/29. I will get 6 treatments. I had this first in the uterus in 06 and had surgery and it was a very early stage, so I am so shocked to have it again. I am interested in anything that others learn about this and what we can do to save ourself. I pray a lot and pray that the scientists will find cures.

Would like to hear from anyone battling this horrible disease.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

You are facing my biggest and very possible/probably fear - recurrence. My doc said many times that UPSC can be "managed" successfully. You can do this!! Check out the book "Getting Well Again" by Simonton. There is alot we can do to help us battle disease.

Take heart and Keep fighting!!!

Mary Ann aka Daisy

woofgang's picture
woofgang
Posts: 12
Joined: Apr 2009

So sorry, Fran, to hear about the reoccurrence. It's my biggest fear and probably always will be since this is a nasty, aggressive cancer we've been asked to fight. Our ovarian cancer sisters fight it so bravely and live with hope and yes, even joy, in spite of the constant recurrences that face. Somehow, I think if they can do it, so can we, with God's help. You're in my prayers, dear sister.
Sharon

MaryAnnOnTheBay's picture
MaryAnnOnTheBay
Posts: 20
Joined: May 2009

I'm sorry to hear about your recurrence, but I know there are others of us out there and hope to hear more of their experiences. My recurrence was found in July 2008 and because of kidney problems, I did not start chemo till December 2008. I had 6 rounds of taxol and carboplatin. Then the doctor said I was doing so well--minimal side effects from a slightly reduced dosage--that they would give me three more. Just as my hair was reaching a nice peach fuzz. Had my second of the three yesterday. Wore my "cancer sucks" socks. Feeling ok today. Have scheduled lazy day tomorrow with lots of choice of books to read.
Mary Ann on San Francisco Bay

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I echo Mary Ann's sentiments: Recurrance is also my biggest fear, as I imagine it was yours. I've thought about it a lot, and I think I'll be able to deal with it if it comes. (after a VERY long hard cry, I'm sure.) But I still fear it. So BIG HUGS!!

Is the current carbo/taxol chemo regime something you went through before with your initial diagnosis? Or are you a first-timer for chemo and radiation? Please forgive my questions, and don't feel you have to answer if you'd prefer not to. Oncologists are very aggressive with additional treatment beyond surgery now for even Stage 1 UPSC because the recurrance rate is so high, and usually occurs within the first 2 years. My UPSC is Stage III-C, so I have no choice but to take as much chemo and radiation as my body can stand.

cookie1948
Posts: 79
Joined: Feb 2009

Hi Linda and all,
I did not realize that chemo and radiation is done after being staged as 1a. As i said before, my mom is 85 and had abdominal hysterectomy march 12th, so now after i've read many more posts i realize recurrence seems almost to be sure if u don't get chemo and radiation. I would have encouraged her to try it but even the oncologist thought it was ok not to have it, probably due to her age. You all are young so i completely understand aggressive treatment. Maybe he could have suggested one or the other but didn't. She is doing well so far but now i hear within 2 yrs it may re occur. I feel so terrible that all of you have UPSC, and never had heard of it before. I wish my mom could have had a lesser cancer. She is such a trooper and does so much for everyone. My daughter and grandaughter live with her and actually depend on her a lot for a roof over their heads. sad, but true. I help a lot as they are all next door. Take care and God Bless you Linda, Deanna, Ro and all of you wonderful women.
Cookie
I wish you all nothing but good thoughts , hope and strength!!!

ThirdHorn
Posts: 3
Joined: Jan 2008

Hi, Cookie: Like your mom, I was diagnosed with UPSC Stage 1a (January 2008). Had a total hysterectomy (robotic - DaVinci system) and they took most of the lymph nodes in the area. After doing lots of research, I decided to forgo chemotherapy and radiation and just do "watchful waiting." After I made that decision, my doctor agreed that that would have been HIS approach as well. I am at peace with the course I have chosen.

Though, like everyone else, I worry about a recurrance, I worry more about how I am living my life TODAY - if there's one thing cancer has taught me, it's that we only have this moment. (I had breast cancer back in 2003; 6 rounds of chemotherapy, 36 radiation sessions; lumpectomy; no lymph node involvement.)

You and your mom are in my prayers. Keep hanging out with the fantastic women on this discussion board - they have so much to share.

Margie

Fran60's picture
Fran60
Posts: 24
Joined: May 2009

I am going through the same regime I did the first time around. Carbo/Taxol every 3 weeks. My Dr. was very frank about this reocurring and the battle of winning. There is one thing for sure that our bodies can only take so much chemo. The problem is it is hard to get every little cancer cell, so they start to grow again at some point.
I would love to know if there are any good statistics that someone has beat this horrible type of cancer even it was for 5 years. I have a new granddaughter coming and I so want to see some of her life.

barb55's picture
barb55
Posts: 91
Joined: Jan 2009

This group has grown so much since Linda first put her words out. I guess we are just getting better at finding one another and that we can just send more energy through our numbers. I hate that we share this uniquely difficult cancer- I hate even more that we are now reporting recurrances. But looking back through our messages I have to say that we are doing okay- we are here, we are strong in spirit and generous with our support and prayers and honest with our pain and fears. We are funny too- I've had some pretty weird images of myself with strawberry yogurt :) We are also educating ourselves- so helpful. I am not in denial here- I am scared but this group gives me hope because we are all here. Fran, welcome and come back soon and often. Barb

deanna14
Posts: 733
Joined: Oct 2008

This is a really good place to be in our situations! I thank God for all of you.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

We've had some long-time survivors who have posted here, Fran, so please don't give up hope. And those 2 women are both planning to live a LOT longer than the 5 and 7 years they've already enjoyed since their diagnosis. The treatments they did years ago for UPSC were often less aggressive than they do now, but for these 2 long-time UPSC survivors that posted with us here, they both had the 6 rounds of carbo/taxol chemo and pelvic & brachy radiation treatments that are regularly given now. Most of those with recurrance that have posted here thus far, either did not initially have complete dedulking surgery and did not have an adequate number of lymph nodes removed to correctly stage their cancer (in my opinion anyway!), or did not receive aggressive chemo and radiation after their surgery. It sounds like they did everything right for you the 1st time around, and that it still came back. I'm so sorry, Fran. At least you know that you can tolerate the chemo, and perhaps the treatment won't be as scary for you. ((((Fran)))

culka's picture
culka
Posts: 158
Joined: Oct 2009

I was initially diagnose with colection of uterine cancers. UPSC, clear cell and endometroid, but docs were so slow, so till hysterectomy I got acupuncture treatments and started herbal therapy. My doctor was teasing me with chemo before and even after surgery, but patology report said no UPSC so I end up with radiation only. After that they didn`t mention clear cell any more, maybe because I`m smiling too much. I am still alert, if they are hiding somewhere waiting for my dietary mistake.
I just wanna ask you, are you always thinking about your cancer or it will go away. In past 18 month I didn`t think about it for three days (we were moving) and it`s anoying.

california_artist
Posts: 850
Joined: Jan 2009

This cancer thing has sort of taken over my life even though I've had no official therapy. Perhaps if I had left it up to the doctor's to decide what should happen to me I wouldn't spend so much time thinking about it. But since I have chosen to do the best for me according to --ah--me. I've found it to be a huge responsibility.

The great news is that you do not have UPSC or clear cell. The type of uterine cancer you have has the most promising prognosis of all. And yes, it is horribly annoying, especially since I know I should be painting and doing a myriad of other more fascinating things.

What kind of herbal therapy are you doing?????

Have you got any opinions about wheatgrass one way or the other. Personal experience with it???

What else are you doing in the alternative/complementary therapies bent?

Love to you,

Claudia

It's been almost exactly 18 months for me too. The chance for recurrence takes a sharp drop at the one yearish point and then goes down some for the next six months and then tapers off gradually. So every month past eighteen months is good news. Past two years it almost becomes great news. Although I wonder if those of us doing other things to slow the cancer's growth might have a recurrence a bit further out on the time curve.

Love to hear from you.

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