ANYONE WITH UPSC NOT HAVE A RECURRENCE????

We've had some really long-time UPSC ladies w/ no recurrences.
(((Maggie))). If you have the inclination & time to read through that long long OLDEST post on this Discussion Board that I started back when I was first diagnosed, you'll see some encouraging posts from ladies with UPSC that popped in to let us know that they'd had UPSC and had never recurred & it'd been 5 years; one was 8 years: I think someone even posted on that thread that was 10 years out from their initial treatment protocol and had not yet recurred. I know that Peggy who posted all the time then was 2 1/2 years from her diagnosis of UPSC with no recurrence qnd that was 2008 and I know that she is still cancer-free. Marge and Deanna both were diagnosed about the same time as I was with UPSC and they have npot recurred in the 26 months since we started in this journey together. I think a couple of ladies who refised treatment have also escaped recurrence for a couple of years so far so good.

It's a crap shoot; the luck of the draw. I hope some ladies post here with their success stories to offset all of us 'recurrence' ladies that I'm sure are super-scary to the newly diagnosed.

maggie_wilson said:

thanx linda
i appreciate your post with names and numbers of women with upsc with no recurrences. that is good news-- that it is possible, it does get discouraging to read so many posts of late of upsc recurrences, that i can lose sight of those that actually manage to remain cancer-free. too true re: luck of the draw. at this point, i'd be glad enough to have remissions post chemo that last as long as the one i've had--over a year. waiting to hear about the assay results, so that when i do have chemo again, i'll at least not have a hit-or-miss chemo, but one that presumably will be effective for awhile. i haven't read the thread you started from the beginning, but have perused it from time to time. don't know if i have the will to go through it from beginning to end, but i may at some point. i'm still on hormone therapy and will be for another month, first tamoxifin, then i think they'll add megace the second month. never know what could work.......

in the meantime, i hope you're still feeling good, and that you'll soon be kicked back into remission for a good long time. wish we also knew of women who've had recurrences, and then were ned for years on end. would love to hear from those women......

hugs and sisterhood,
maggie

So Far, So Good
Hi Maggie,

I had a CT scan and Pap smear last week as well as regular oncologist visit the week before. Everything seems to be clear. I had my surgery at the end of July 2009 and my last chemo in September 2009. With the new FIGO staging I am 1a but grade 3 upsc. I feel truly blessed that I have not had a recurrence, and feel so sad every time one of our sisters experiences one. It must be truly frightening.

By the way, when are we going to have that cup of coffee?

Lori

minniejan said:

thanks
I thank you for posting those with no recurrence. I am just starting my journey with UPSC and that really helped.

Jan
Jan, I reread your earlier posts. I also have an elderly mother in a nursing home and three adult children who have their own problems. I finally had to decide that right now my health has to be the my main concern. I think it was Maggie who discussed how stress can negatively affect our journey with cancer. I found that once I started thinking of me, my mother and children were able to take care of many of their issues without my involvement. I don't know whether any of this applies to you, but this is the time for you to ask others for help. I will keep you in my thoughts as you travel this scary road.

Lori

bots said:

Jan
Jan, I reread your earlier posts. I also have an elderly mother in a nursing home and three adult children who have their own problems. I finally had to decide that right now my health has to be the my main concern. I think it was Maggie who discussed how stress can negatively affect our journey with cancer. I found that once I started thinking of me, my mother and children were able to take care of many of their issues without my involvement. I don't know whether any of this applies to you, but this is the time for you to ask others for help. I will keep you in my thoughts as you travel this scary road.

Lori

thanks
Hello, Thanks for the thoughts. I am slowly learning to let go and let others handle the problems with my mother. After all, we decided to place her in a nursing home to help our family, I have two sisters who live close by to the home and they can visit instead of me. Although the snow in the northeast has kind of put a damper on visits for a few dayys! I think the snow was sent to slow us all down and give us a breather! I have wonderful friends who have been amazing in these last few weeks as I recuperate from surgery. Jan

barb55 said:

I have not had a recurrence
Hi Maggie- I've posted this here before, but am happy to repost my story. In August of 2007 at age 57, I was diagnosed with stage 3C UPSC. I had a total abdominal hysterectomy with bilateral salpingo-oophorectomy, pelvic and para-aortic lymph node dissection, omnectomy and pelvic washings. I had 39 lymph nodes removed and 7 were positive and so were the ovaries. I had three cycles of Carbo/Taxol . This was followed by aggressive radiation- paraaortic/pelvic adjuvant and one vaginal boost. I also had early stage breast cancer in 2005- I've assumed that the Tamoxifen I took for that gave me the uterine cancer. I have not had a recurrence of either cancer. Every day is a gift.
Barb

Barb55
Wonderful!! Can you share what you have been doing post medical treatment - e.g. lifestyle, work/diet/exercise regime, any alternative treatments. Is there anything that helped you, do you think? how are you monitored? Any suggestions for us? Mary Ann

daisy366 said:

Barb55
Wonderful!! Can you share what you have been doing post medical treatment - e.g. lifestyle, work/diet/exercise regime, any alternative treatments. Is there anything that helped you, do you think? how are you monitored? Any suggestions for us? Mary Ann

Mary ann
Mary Ann, I have been thinking long and hard about what I could offer that would be useful- I would give almost anything for that. I'm afraid I haven't got much to say that hasn't already been said- I'm really not sure how you will interpret this or how well I can articulate it, but I'm just going to start writing .... I think I had an "acceptance" of the disease. I didn't take it personally, I don't think I ever felt like I was battling it. Of course I was afraid and suffering, but I put my energy into listening to my body, letting others help me and kind of shutting out everything else till I became stronger. I was in a uniquely fortunate situation in that my children are grown and I had recently retired from teaching after 34 years so I could just focus on me and focus on the love people sent me. I also remember thinking that I would be the best patient any doctor ever had- I would will myself through this and I would be gentle with myself as well. I would breathe in and breathe out. Nothing more. Maybe all it was, was a great sense of denial. It certainly was a great deal of luck. I had excellent doctors, very aggressive surgery and treatment too, but so much luck.
As for my checkups- I am up to a 7 month wait. They consist of bloodwork (CA125 of course) and a short physical, (lots of tapping on my tummy) and an interview with the doctor. I had only one CAT scan the first year after my treatment ended- and I requested that because of stomach pain. I didn't get any other scans for the UPSC.

As for diet- I don't eat meat - I am very very conscious of eating unprocessed food. I really care about the quality of my food and where it comes from. But I don't deny myself sugar or chocolate or a glass of wine. I always feel better after exercise- walking and Pilates and I need to do way more of it. I meditate and practice visualizing- nothing very fancy. I think I laugh a lot more than most people. I start small project like knitting and tell myself that nothing can happen to me because this project has to get finished (maybe more self delusion?) and I think about the garden which will have to be planted this spring . I don't get much further ahead than that-. I take on jobs that don't have a long term commitment - I really really try to be in the moment- believe me, I am not always that successful. I feel good- not great. I'm still more fatigued than I want to be but it may be unrelated to the cancer. I end every day with the words, "Thank you." I hope this was helpful.

maggie_wilson said:

barb,
thanx for your comments. you do sound like you had an aggressive treatment, which apparently worked--may it ever be so. it' s so good to hear from women who've been ned for years. i agree, every day is a git.

sisterhood,
maggie

This was sent to me as a Personal Message here (& saved).
I'm sure she won't mind if I share this with all of you as it was posted on another Discussion Board:


As I posted on one of the discussion boards:

I was diagnosed in 2000, long enough ago that I don't remember the diagnosis details, other than that they found it in one lymph node as well as the uterus.

Total hysterectomy (including ovaries), Whole Abdominal Radiation Therapy (WART), Megace for 2-3 years.

Still cancer-free! The side effects of WART are increasingly kicking my hindside, though.

And you found some hopeful research, that's wonderful. I'm like one of the folks who responded to your research posting: I had stopped looking at the research years ago because it was too depressing. But the results you found look very promising!

So now you know at least one person who has survived the diagnosis for 10 years.

If you know of any folks dealing with long-term gut radiation side effects, please let me know. I'll look around the site for digestive cancers, maybe run into some folks there.

lindaprocopio said:

This was sent to me as a Personal Message here (& saved).
I'm sure she won't mind if I share this with all of you as it was posted on another Discussion Board:


As I posted on one of the discussion boards:

I was diagnosed in 2000, long enough ago that I don't remember the diagnosis details, other than that they found it in one lymph node as well as the uterus.

Total hysterectomy (including ovaries), Whole Abdominal Radiation Therapy (WART), Megace for 2-3 years.

Still cancer-free! The side effects of WART are increasingly kicking my hindside, though.

And you found some hopeful research, that's wonderful. I'm like one of the folks who responded to your research posting: I had stopped looking at the research years ago because it was too depressing. But the results you found look very promising!

So now you know at least one person who has survived the diagnosis for 10 years.

If you know of any folks dealing with long-term gut radiation side effects, please let me know. I'll look around the site for digestive cancers, maybe run into some folks there.

2 Year Survivor
I was staged 2B with UPSC and Clear Cell. The biggest thing I have changed is my eating, but not much. Add more fruits and veggies, green tea everyday with raw ginger. Love my raw ginger! I have incorporated turmeric into my diet also.

Don't worry much about recurrance anymore, but every now and then when something feels odd in the body the old mind starts going... My husband and I remodeled our bathroom and my lungs started hurting. Was having a hard time breathing and of course I thought cancer instead of allergies to the dust. But the worry is getting better. Sometimes it feels that I never went through it all.

I will say, my last oncol appoint was in Nov. and I now only have to go every six months instead of every three. It's hard letting go of that security blanket, but I guess you just have to adjust the thinking process.

LINDA - I have no words to discribe how I feel for what you are going through. Know I am holding your hand and praying for you. You are my sister and my heart hurts for all you are going through. You are a strong and postive woman and have helped sooooo many women here. You are dearly loved by all.


MIND, BODY AND SOUL!!!

Hugs, Marge

Rewriter said:

Also 2-year survivor
My diagnosis was Stage 1a UPSC. I opted for 6 rounds of chemo with carboplatin/taxol and 5 rounds of vaginal brachytherapy, which I completed in November 2008. So far, my CA-125--a good marker for me--has been either 4 or 5, and my internal exams have been fine. Unlike Marge, I still worry about recurrence; but that may just be my personality. It seems that every time I have an excess of stress in my life, I worry about the cancer returning.

I have done a great deal to change my eating habits. I've completely given up sugar and meat. My major sources of protein are quinoa, lentils, spelt, and kasha. I eat fish and will occasionally have some chicken, but I live on stews that include a legume or high-protein grain combined with lots of fresh vegetables (e.g., zucchini, sweet potatoes, kale or spinach, carrots, turnips), tons of turmeric, garlic, caramelized onions, and fire-roasted tomatoes. I make big salads, too, full of all types of greens, tomatoes, avocados, and either walnuts or almonds.

My consumption of dairy products is low, but I still have about a cup of yogurt several times a week. Fruit is always in my fridge, and I eat an orange and a handful of berries each day. Breakfast is either oat bran or whole grain toast, and I stay away from eggs to help keep my cholesterol nice and low. My biggest problem was switching from fruit juice as my beverage of choice to plain or sparkling water. Red wine is still my friend, and I have a few glasses a week.

Although I am pretty sedentary when there's snow outside, in better weather I walk about 20 miles a week. This is actually lots of fun because I enjoy exploring new neighborhoods and vary my walking route each time.

I hold all of you close; you've helped me through some really dark times. For all of you going through a difficult time, I will be sending you the most positive thoughts.

Jill

Diagnosed July 2008
Hi Jan,
I was diagnosed with uterine cancer in July 2008, Stage I. When they did my hysterectomy on September 11, 2008, my diagnosis changed to Stage IIIC UPSC. I just had a PET scan last month that was negative for any reoccurance.

Linda,
I concur with everything Marge said. I think of you and pray for you often. You have made a huge impact on my life over the last couple of years!

God Bless,
Deanna

daisy366 said:

Happy for you Jill, Marge, Deanna
Awesome that you are all NED!!! Party on ladies!!

Thanks Jill for your eating info - I will copy this and use to inspire me to get on that bandwagon. I was good for about 5 months last year but got sloppy late in year. Your diet and EXERCISE may be key things in your positive result. I have quit FT work which was a big stressor for me. There's no excuse for me to not eat healthier and exercise. I just started walking about an hour a day and more yoga. I know I can do this.

Thanks again. Mary Ann

Mary Ann, you ARE doing
so many wonderful things to minimize your stress and take care of your health. You inspired me when I first joined this board to do some creative visualization and meditation, both of which are challenging for me but ultimately very helpful. Your decision to quit FT work--and the stress that went along with it--is also IMHO a very positive move.

Changing my diet was easier than I expected it to be. I LOVE to eat and consider myself a major foodie, but now I try to figure out how to replace the less-healthy foods I was eating with healthier versions--for example, whole wheat pasta instead of cheese-filled, white flour manicotti; homemade lentil soup with spinach instead of cream of mushroom; oat bran with fruit and nuts rather than a goat cheese omelet. Also, once you cut out sugar, you no longer crave it. Really. I can watch friends eat ice cream and not be the least bit tempted. Stevia and Agave Nectar in small quantities I believe are ok.

And don't forget to add turmeric to almost everything...and try to chew a little piece of raw ginger every day, which I am not good about doing. With regard to the turmeric, I took Maggie's advice and have a piece of toast with a little bit of olive oil, turmeric, and ground black pepper. It's GOOD.

Exercise I have found to be key, and it has the added benefit of being good for my mind. I am a major worrier and the worst type of person to have had this diagnosis. Literature and my oncs tell me that at Stage 1a (USPC was a tiny portion of a polyp, which was the extent of my cancer) my prognosis is good, but I am doing EVERYTHING in my power to help make that true.

GOOD for you that you are walking so much and increasing your yoga. I've always been impressed with the ways in which you take care of yourself and respond to challenging times.

All my best wishes to you and all my board sisters,

Jill