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Which UPSC Sisters haven't found us yet in our new site location?

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

Who is still among the missing of the UPSC Sisters? Do any of you have email addresses so that we can let any of the others who haven't posted yet here, know where we are? I wish they'd fix the 'email notification' feature since that would give them the link automatically.

deanna14
Posts: 734
Joined: Oct 2008

I keep praying for something that will make this all worthwhile. Knowing that I have helped someone else feel better while going through this means a lot to me. So thank you. You and your mom have a special relationship, may God bless you both and I know he is walking with all of us through this difficult and scary journey. I wish I still had an email that I received a few weeks ago, I would forward it to you. The title was something like "did you feel that", when you scrolled down there was a picture of the Lord embracing a woman. It really made me imagine feeling His arms around me. I don't have a picture to send with the thougt, but I pray that you and your mom can feel the Lord embracing you! I have to remind myself daily to turn my worry and fear over to Him. He will give you peace...

br
Posts: 3
Joined: Mar 2009

Hi,
I am home healing from a hysterectomy and the news that I have Stage IV UPSC. Cancer was found in my uterus, ovaries, omentum, perametrium and diaphram. It has not reached my lymph nodes yet. This is all very new to me, so I just wanted to log on and hopefully hear some encouraging stories and meet others who are fighting this along with me.

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

The best place to start to learn about UPSC is to read the really LONG thread you'll find here on this Discussion Board with something like 300+ posts. It loads VERY slowly and is VERY long, but if you work your way through it over a few days, you'll know a LOT more about what you are dealing with. I am so sorry that you also have to go through this journey, but am very glad that you have found us. Feel free to ask us anything.

deanna14
Posts: 734
Joined: Oct 2008

I am so sorry to hear that you are joining the fight against UPSC, but glad that you found us here. I am proud to say that this is a very caring and supportive group. Feel free to ask anything, we are all very willing to share what we know. For now, try to rest and heal from your surgery. Keep us posted on your progress. We will be here for you.
Take care and God Bless you,
Deanna

br
Posts: 3
Joined: Mar 2009

I love this site and am so happy to be able to read the story of other sisters. My son helped me apply and I wasn't sure how to name myself (privacy issues of course). I am just a week out of surgery (complete hysterectomy) and I am not too focused as yet. I feel like I need to get started with my treatment, "yesterday"! I want to stop this thing! What I am most anxious to know is how long you have been fighting this and how successful treatment has been for most of you. I want to be a survivor not a statistic and my journey is just beginning, so I need courage and the hope that goes with healing. I believe God loves me and will work to heal me, but I also believe that His love comes through others and I reach out in hope and love to you. Thank you for responding.
BR/Betty

deanna14
Posts: 734
Joined: Oct 2008

I am with you on that! I want to be a survivor and not a statistic also. We are all in various stages of treatment and recovery. I will tell you my story and let the others share theirs.
I am 39 years old and I was originally diagnosed with "endometrial cancer" in July of last year after a D&C and hysteroscope. I had a total hysterectomy on September 11, 2008 and they found UPSC with mets to one pelvic lymph node. I started radiation treatments in October last year and completed 25 external pelvic and 3 high beam internal treatments in December. By the way, I also got married in November amongst all of this chaos! I started chemotherapy with carboplatin and taxol in January. I have completed 3 treatments and have 3 or 4 left to complete. I hoped to be finished by the first week of May, but have since had a couple of weeks of delays due to low blood counts. So now it will be the end of May at the earliest.

That's my story in a nutshell. I try to keep a positive attitude. I try not to pay much attention to the "statistics." I pray a lot and just like you trust that the Lord has brought me to this and He will bring me through it! I also pray for all of the ladies on this discussion board that they too will stay strong and win this battle!

I know you are in a hurry to get on with your treatment, but right now, you must concentrate on healing from your surgery first. Did you have open surgery? Some of the ladies here have had the DaVinci robotic surgery which allows for faster healing. I had to wait about 7 weeks after surgery before starting my treatment. So, concentrate on taking good care of yourself, so you will heal quickly and get started on treatment.

Hugs,
Deanna

br
Posts: 3
Joined: Mar 2009
Ro10's picture
Ro10
Posts: 1407
Joined: Jan 2009

Welcome to the site Betty. I am sorry you are having to go on the same journey we are going on. We all keep praying that our treatments will make us all survivors. We believe that God will help us through each day. Rest and allow the healing from your surgery to occur. I know how anxious you are to get the treatment started. I hope you have time to read the entries from others, as I found so much encouragement from what others have shared. It is much more encouraging than what you read on the internet. That is pretty scary stuff. Take each day one day at a time. Feel free to ask any questions, and someone will probably have an answer for you. HUGS to you.

claudiamd1's picture
claudiamd1
Posts: 3
Joined: Apr 2009

I am also new to this site and it was found by one of my dear friends who is on the Internet all the time especially after I got diagnosed with uteran/crevical cancer. I had my surgery on the 12 of February and it was done by da Vinci (I know call my body, body by DaVinci it makes people laugh and forget the serious side of it). I am 42 and no one in my family history had any cancer except for my Grandfather on my Mother's side who had colon cancer. I guess that is where the link is. I also had the HNCCP test done and now waiting on the results. My doc downgraded my cancer so I am doing Radiation only and I am on my second week. So far no side effects and the diet is killing me. There are foods I would love to keep on eating since I did loose 14 pounds after my surgery. It took about 5 weeks for me to recoover to where I was comfortable being left alone. I guess my age had something to do with it or not who knows. My surgery consisted of total hysterectomy with 19 lymphnodes removed. I am now getting my feeling back on my right thigh it still is a bit numb but I'd rather pay that price than have a lymph node be positive, which none where. I consider myself very lucky since it was caught at stage 1b grade 3. I have a great family who is very supportive and I know I will beat this thing from ever coming back somewhere else. I have kick ass attitude and it freaks people out, I guess they thought I should be all wallowing in my misery from my diagnosis and I am not. Far from it. But getting back to the point, I am happy that my friend has found this site and I finally have time to log on and see who else is out there.
Claudia

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

Although I am sorry to know that you also are in the midst of this battle with us, I am so glad that you found us. ((((Claudia))))) I am so happy that your cancer was discovered at such an early stage! You have every reason to be optimistic! Feel free to work your way through the many posts here; there is much you can learn that will aid you in being an proactive member of your own cancer-fighting team.

claudiamd1's picture
claudiamd1
Posts: 3
Joined: Apr 2009

Thanks Linda. Yes, I have already found this discussion board very helpful in the fact that my doctor never revealed my C125 score. Not sure why he didn't but I thought it was interesting that so many here in this discussion board had talked about it. I did ask my Radiation Oncologist and she said I really didn't need to know since I'm only getting Radiation. Thanks for the hugs!!!!! Like many on this board I also was shocked when I found out and so was my community and my family, relatives both here in the USA and Germany. They were all devasted by my news. I never felt that way at all, I finally knew what was going on with my body, what a relief it was to find out and being able to battle the enemy. So again, thanks for the warm welcome and glad to have found all of you!
C

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

Hi Claudia,

Welcome. I'm Mary Ann, 61 and stage 3a UPSC patient - had hysterectomy last Sept and completed 6 rounds of taxol/carboplatin. My doctor believes I am NED and I am on surveillance now.

Before my surgery my CA125 was over 200 - it is now 8. Under 35 or so is considered normal. CA 125 is oftentimes - not always - an indicator of treatment response. It is an ovarian cancer marker but UPSC often acts like ovarian cancer. My doctor said that this is a good indicator for me.

Re: you doctor's comments about "you really don't need to know...". This is a troubling and condescending attitude I think. You are the patient and you have a right to know everything and be given accurate information by your healthcare team. I wonder why a doctor would say that?

Keep asking questions!!!!! There are no stupid questions. Information is power.

Best wishes to you. Mary Ann

Ro10's picture
Ro10
Posts: 1407
Joined: Jan 2009

Mary Ann that is wonderful news to have NED. Snf yout CA 125 count is great. I am so happy for you to get the great news. Enjoy your time to be free of treatments. Hope your next check-up goes as well. Take care. HUGS to you.

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

I was diagnosed with endometrial cancer with both papillary serous and clear cell features 12/22/2008. Surgery was New Year's Eve, and the pathology came back as a stage IIIC. There was a tumor deep in the endometrium extending into the cervix and microscopic cells in 3 of the pelvic lymph glands. They took out the uterus, cervix, ovaries, fallopian tubes, omentum, and the 3 pelvic lymph glands with cancer. I had a second opinion at MD Anderson, but both doctors had the same recommendation - 6 courses of chemo w/taxol/carboplatin and 28 radiation treatments. The only difference was that one doctor said radiation should be first and the other said chemo should be first. I'm doing chemo first and finished the 4th treatment 4/9. I've tolerated it well so far, but must admit I'm nervous about radiation and need to learn more. My CA 125 was 13.4 on Jan. 27 and has dropped to 4.2. Doctor says normal is 35, so that's all positive. I feel there really isn't any cancer there now, and we're just doing all this as a precaution. I look forward to catching up on all of your messages and gleaning some wisdom from your experiences.

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

Welcome! There's a few of us with Stage IIIc UPSC that post here, currently in treatment. You are so right that oncologists don't agree what order to have the radiation and chemo, and I think it may have to do with where they see the cancer seemed to be trying to travel to,...distant or near. My oncologist wanted me to have all my chemo first because he most feared distant metestasis for me, perhaps because there were microscopic cancer cells found in the 'wash', and my cancer was discovered in a PAP test, showing that clearly the cells were exfoliating and floating free to make mischief. I had my last round of chemo March 26th (6 rounds of carbo/taxol 3 weeks apart when my blood work allowed them that close together), and had my radiation simulation yesterday, with my 28 rounds of external pelvic radiation to start April 30th. (I will also have 3 rounds of internal vaginal radiation after that.) Others posting here with our same III-c diagnosis had all of their radiation first; others are having it 'sandwiched' between the 3rd and 4th chemo round. Everyone's cancer is as individual as a snowflake, and this cancer is rare enough that they just haven't been able to conclusively test what will work best under what circumstances.

That's a GREAT CA-125! You are right; you may already be cancer-free! Try to hang onto that idea. I encourage you to be aggressive and try and get all of your treatments in, or as many as your body will tolerate. Please work through as many of the old posts here as you can, as you will get a 'real-time' idea what you are going through and what to expect. And don't read anything about UPSC on the internet older than 1 or 2 years old, as things have chenged so radidly for us, for the better!

deanna14
Posts: 734
Joined: Oct 2008

Welcome, I am happy that you found this group to talk to. These wonderful ladies have provided me with so much support through this ordeal. It is so nice to share with people who really understand where you are coming from. I am sorry though that you have this diagnosis.
You have a great CA 125 and it sounds like your attitude is just as positive. I too choose to believe that the cancer was gone after surgery and that treatment is all about ensuring that it does not come back.
I had 25 external and 3 internal radiation treatments from October to December. I had my 4th carboplatin/taxol chemo treatment last Monday and will have 2, maybe 3 more. My 3rd treatment was postponed by 2 weeks due to low blood counts. The have decreased the carbo dose, so I hope to stay on schedule for the rest of the treatments. The decrease in dose may have bought me and extra treatment, but the doctor hasn't decided yet. Whatever it takes to keep me healthy!
Well, again welcome. Take good care of yourself. God Bless!
Deanna

Ro10's picture
Ro10
Posts: 1407
Joined: Jan 2009

Woofgang I am sorry you are joining our journey that we are taking together. I had my surgery done on 1/5/09. I started treatment 1/29/09. I am one of those who had 3 chemo treatments, and started external radiation treatments last week. After the external radiation I will have to go into the hospital for a few days for the internal radiation. Then I will have 3 more chemo treatments. Keep the positive attitude and and I hope you continue to do well with your treatments. So far my radiation has not been a problem at all. You have to go everyday, but I live within 10 minutes of the cancer center, so it is not a problem for me. There is a lot to be learned from all the posts on this site. Feel free to ask any questions you might have. Someone will probably have an answer for you. Where do you live? We have people from many different states. Take care and HUGS to you.

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

Welcome Woofgang from another UPSC sister. I'm Mary Ann and have stage 3a - which I thought had changed but my doc says no, it is still 3a.

I finished 6 rounds of carbo/taxol at end of Feb and my doc is NOT recommending any radiation now. I questioned him and mentioned that "everyone else is!" (like a kid who is left out of the fun - haha). But he said he thinks I'm NED and does not see any evidence radiation is needed. So, Linda, you are right about the "different as a snowflake thing". I'm trying to enjoy the NED and not worry that I am "under-treated" - I hear you all about the aggressive treatment from the onset to avoid a recurrence. Doc said "there's 60% chance you won't have a recurrence". I'm trying to think positive. The PET scan is still in appeal. If that gets done, it may shed more light on the prior "lit up" areas from PET done 1 month after surgery. Doc thinks this is more likely healing or inflammation than cancer because my pelvic nodes were all negative. It makes sense to me after he explained it all.

Thank you Ro, Deanna, Marge, Linda, Sharon, and all others who are so encouraging and thoughtful. It really is great to be connected to you all. What a club!! It beats the alone feeling before my husband found you ladies. It would be great to have a reunion someday.

Deanna, I think you should pursue your complaint. I am dragging my feet on a complaint against the ER dept. when I was admitted with SEVERE PAIN last 9/11 when my cancer decided to make itself known to me. There was no chair at the admitting desk - I ended up doubled over in pain in the waiting room unable to move - they kept calling my name but I couldn't move. My pain went uncontrolled for hours while they dilly dallied around. I complained verbally but noone ever called me back and there is still no chair next to the admitting desk. So I need to let the CEO know what is going on in the ER. We - including ME- need to make our voices heard instead of being silent.

I feel good and everyone says I look good. My hair is growing back enough to "get messy" - I look pretty good with my velvety skull - I'll have to get a pix taken and post here. I'm working nearly fulltime (I'm a clinical social worker) and singing at church and community chorus. Life is good.

I pray for all of us and send you all love, smiles, and hugs,

Mary Ann

debbiediamond
Posts: 1
Joined: May 2009

Hi everyone.....glad to find this group.....it's going on a year next week that i had my surgery....went in for an overnite stay to have a full hysterectomy with upsc diagnosis and ended up in hospital for 12 days with an ICU stay of nearly a week cuz when they took the tubes out after surgery, my body did not respond by breathing on it's own and then my lungs collapsed and they had to put the tubes back in real quick cuz i had stopped breathing....a terrible experience to say the least. Anyway, they said they couldn't get the lymph nodes but removed everything else and the wash was ok, (and the cancer was 50% into the muscle)...My oncologist was very negative and we did not get along at all....she was bleak and didn't seem to care much about me and did not seem to want to listen to me, so after having one session of chemo and getting sick from it; I did not continue with the other five sessions of chemo, nor the radiation, so i do not see her anymore or talk to her. I don't want to seem negative cuz i am not that personality; but i have been so anxious cuz i did not follow the rules and have pretty much kept myself bedridden with anxiety, depresssion, and fear that i did not do what they told me to do.....I guess i have said enough, cuz i just blame myself over and over for all the flashbacks i have to the surgery etc....thanks for listenting.....oh, i was diagnosed with stage III melanoma four years ago, and have not been able to walk for two years from severe knee arthritis....sorry for sounding so down, but I am these days for sure......deb

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

It sounds like you have been through a VERY rough time, you poor thing! No one can blame you for wanting to get away from an oncologist you didn't like or trust. It sounds like you are beating yourself up about your decision to stop chemo every day. Maybe you would feel better if you went to a DIFFERENT Gynecologic-oncologist for an opinion. You could get a new CT-scan and start over with cancer treatments and get something prescribed for the depression and anxiety. Big big hugs, Deb! I always have said that the surgery is the hardest part opf the treatment, harder than chemo and harder than radiation. So the hardest part is behind you now. Please think about it. Regardless, please stay with us and share the support of this group of wonderful ladies. But please think about finding a new Gyn-onc; there are some wonderfully supportive doctors out there and you deserve someone who will work with you and undrestand your justifiable fears and concerns.

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

I agree with Linda. We are here for you - to listen, encourage and support. Everyone needs HOPE!!! This diagnosis is devastating to say the least. It helped me when people told me to be strong and FIGHT!!

It's got to be horrible for you to have a doctor who was not supportive- it obviously was not a "good fit". We are the "customers" and we can FIRE ANYONE WHO IS NOT HELPING US or treating us with care and dignity. With our rare cancer we need a gynecologic oncologist. You can find one near you by searching online - maybe the cancer society or your primary care doctor can recommend one to you.

I would encourage you to stop beating yourself up - Author Louise Hay says that we need for "forgive others - and ourselves - for not living up to our expectations". That little phrase has helped me alot to let go of the burden of resentment and guilt that can paralyze us. I also got strength from O. Carl Simonton's book "Getting Well Again" in which he teaches meditation and guided imagery to help the body heal. The mind is very powerful.

So, Deb, hang in there and take heart. You CAN DO THIS!! And we are here for you.

Mary Ann

roxiesmom's picture
roxiesmom
Posts: 5
Joined: Aug 2009

hi Debbie,
I just joined here and am no expert, but you have to get a handle on your health.
Get yourself over to a rheumatologist, or even a primary care doctor and get yourself back up. Start stretching your body in bed. Stretch everything.
- there are all of these incredible new arthritis cures that actually reverse the arthritis. If you can afford PT - great, but you can do it on your own just fine. One foot after the other with a walker. Put a brace on that knee if you need to.
You have to walk through the pain, first with a walker and then a cane. My mom broke her hip at 87, and she got up, so you can too. She was never steady Eddy to begin with, but we got her up. The pain about killed her, but she did it.

Don't beat yourself up over the decisions that you made. Screw them, it's your body. You get to choose what ever you want to do with it.
I'm doing chemo only because they are making me. My preference would be to do it on my own, so if nothing else, search alternative cancer cures - eat to kill cancer, do all of the things that you can at least do now on your own and as soon as you can, go find another oncologist that isn't such a sourpuss.
It's the elephant in the room, Debbie - you can't ignore it forever.

This website may seem a little wacky, but they have a ton of great and free information that will be a good start for you.
Just remember that everyone has their point of view, and you don't need to understand all of it to be able to gleen good information that you can understand. And try. Just try. I'm crying everynight like a freaking baby, Debbie, this is not normal for anybody. We are all in the same mess, so please just try and start somewhere, ok?
http://www.new-cancer-treatments.org/Articles/CancerDiet.html

Warmest thoughts,
Susie

roxiesmom's picture
roxiesmom
Posts: 5
Joined: Aug 2009

my name is Susie, and I am registered here with a photo, but not
sure where exactly I am on the site. I put in that my cancer was Uterine,
but UPSC isn't a category. I want to wind everything back to just early
June, when I had never heard of any of this stuff.

I just wish I was as far along as you are.
my email is susieakins@cox.net.

thanks Linda,
Susie

Ro10's picture
Ro10
Posts: 1407
Joined: Jan 2009

You are in the right place if you have UPSC. Unfortunately that is the diagnosis most of us have. We welcome you on your journey with us. Feel free to ask any questions you might have, or express any fears or anxieties you may have. We will try to help you on this journey.

I was diagnosed in January 09 with Stage 3-C UPSC. I had robotic surgery in January. I just finished my 6 chemo treatments and the external and internal radiation treatments. It has been a long journey, but this site has helped me so much with all the encouragement, support and answered questions by these wonderful ladies. Good luck to you. I love your picture with your dogs.

deanna14
Posts: 734
Joined: Oct 2008

Hi Susie,
I am glad that you found all of us here, but sorry that you are going through all of this. A lot of us on here have UPSC and some have the more common form of endometrial/uterine cancer.
I would be nice to have a remote on your life to rewind, fast forward, pause and replay. LOL... too bad it doesn't work that way.
I am 40 years old and was diagnosed with UPSC last September, when I had a total hysterectomy. I had mets to one pelvic lymph node. I had 25 external radiation and 3 internal radiation treatments from October to December of last year. I started chemo with taxol and carboplatin in January and finished on June 10.
When were you diagnosed and where are you in treatment? Just curious where you are from if you don't mind sharing. The hospital that I take treatment at is Cox hospital in Springfield, MO. Just wondering as your email is cox.net?

Hugs and prayers,
Deanna

roxiesmom's picture
roxiesmom
Posts: 5
Joined: Aug 2009

I live in Aliso Viejo, CA. Just south of Newport Beach. I know I'm 54, but I really think I'm 40 - like Deanna. I'm going to name drop here, only because I think it is just surreal. The actress - Annette Benning's sister is a gynocologist in Newport Beach. I could never afford to go to her because she doesn't take insurance.
-She is a neighbor with one of my best friends.
Who only happened to mention to her that her friend (me) had some bleeding - was that serious? Jane (Benning) told her to tell me to assume it's cancer and work backwards. I probably wouldn't have actually gone in that quickly had it not been for that. I will thank her for that one day. I went to the onc/gyn doc that she recommended after I found out how right she had been.
My hospital is Saddleback - just because it is super close - my doctor works out of there, UC Irvine, and Long Beach Memorial. Had all the organs removed two weeks ago. Starting chemo the 19th, and scared to death. I don't know what grade I am. I know it's a tough cancer to get, but my doc is not recommending radiation, similar to a few others here.

Deanna - did you have it anywhere other than the uterus and one node?
Why are our therapies so different, I wonder?
Mine was the uterus and one tube. No nodes. But I still get the barbaric chemotherapy that all of you brave soldiers have battled. I've heard such hideous things, like cancer sores in the mouth,
puking, sore bones, I just can't wait.

Other than what they are going to give me for all of that - any suggestions to prepare? Don't eat much before you go in?

They tell me it's a 6 hour ordeal.
What do you do for 6 hours? Sleep? Be sick?

Every book I read about cancer tells me to NOT have chemo, to just get super alcaline (which I am now) and fight it with my own immune system, which there won't be much left of, after chemo.
I'm just depressed - and so scared. It's just me and the two knuckleheads in the photo. No one else.

I am so glad I found you!
Susie

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

Warmest welcome. Cancer is so scary and everyone needs a place to communicate with others going through the same thing. I strongly encourage you to get a paper copy of the pathology report from your surgery. You need to know the GRADE and STAGE of your cancer, so that you can make informed decisions on your treatment options. For instance, if you have a Grade 3 (fast-moving, sneaky, and sometimes resistant to treatment) cancer, you will want to fight for the most aggressive treatments because you'll want to do everything you can to stop the spread of these fast-growing cancers. But if you have a Grade 1, Stage 1 cancer, you will have the option of weighing any long-term side affects against the curative benefit of any offered therapies. You'll feel and be much more empowered once you know EXACTLY waht you are up against. And we'll be able to help you more with research and personal experiences once you have all the facts on your particular cancer. ((((Susie))))). Big hugs, kiddo.

roxiesmom's picture
roxiesmom
Posts: 5
Joined: Aug 2009

hi Linda and all of you,
I read in one of your postings about this - I thought I was supposed
to LOSE weight with this ordeal - not gain it. I am pretty average,
but always trying to drop that last 5 lbs.
What about all those Law and Order episodes where the guy's wife answers the door with a scarf on her head, emaciated down to 70 lbs... She says "I have ovarian cancer and doing my last round of chemotherapy."

I thought AT LEAST I could lose that last 5 lbs.
Seriously. It is actually normal to gain weight with chemo?

Should I stop eating so much now? I thought I'd be losing.

God- the things we don't know.
thank you so much,
Susie

deanna14
Posts: 734
Joined: Oct 2008

I am all for alternative treatment, but I also think it is not wise to ignore conventional therapies. I would definately do both if I were you. Chemo was not as bad as what people have been telling you. There are a lot of medications for the side effects. I only got really sick with one treatment and that only lasted less than a day. There is some bone and joint aching, but nothing that you can not endure. Some people just take tylenol for this, I took the pain medicine that doctor prescribed. Yes, the actual treatment takes about 6 hours. I slept and read during mine and sometimes visited with other chemo patients.
You can do this, you are strong.
I had UPSC in my uterus and 1 lymph node. I would get a 2nd opinion on the radiation therapy. The most current data show 3 chemos, 25 external radiation, 3 internal radiation and then 3 more chemos to be best. I would insist on the radiation treatments as well as the chemo. There isn't a lot of data for UPSC, but what there is recommends both therapies.
Good luck and God Bless you!

susie1143's picture
susie1143
Posts: 109
Joined: Aug 2009

Hi Susie:
I'm also a Susie and was just diagnosed in July. I'm scheduled for surgery on Aug 26th so I'll know more once the surgery is completed as far as the cancer spreading. However, I do know that my cell is a Grade 3 so I'll probably have chemo and radiation. Have you contacted your local American Cancer Society office? They can give you lots of help. My mother is in remission from breast cancer so I know about being a caretaker and it's hard for me to believe that I'm now the patient. So far I have much support between family members and my church and I'm on many prayer chains. I just signed up today for this site and so far I can see the support is awesome. It's important for us to discuss our issues with this and any help from those who have already gone through surgery, chemo, radiation so that we know what to expect.

Since we're both new I'm not sure of how to do it but maybe we could keep in contact with each other as we go through our treatments so that we can encourage each other.

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

This is a very technical article, but I hope it will help you decide whether chemo and radiation is something you need to do. I am pulling out JUST the information on Stage 1 UPSC:

Cited Article: Boruta DM, et al, Management of women with uterine papillary serous cancer: A Society of Gynecologic Oncology (SGO) review, Gynecol Oncol (2009):

The prognostic significance of thorough surgical staging was
emphasized by their finding of 94% overall survival in women with
tumor limited to their uteri (22 women with 2–73 months of followup).
Turner et al. noted a significant 5-year survival difference in a
group of 38 women with “stage I” UPSC depending on whether
complete surgical staging had been performed or not (100% vs. 61%,
respectively). In a study of 206 women with surgical stage I–II
UPSC, Fader et al. demonstrated that recurrence and progression-free
survival were not associated with increasing percentage of UPSC in
the histologic specimen, lymphovascular-space invasion (LVSI), or
tumor size. Patients with UPSC in their uterine specimens were at
a significant risk for recurrence (21% overall) and poor survival
outcomes regardless of the percentage of total tumor comprised of
UPSC.

Stage I UPSC has a poor prognosis with a high rate of recurrence,
primarily extra-pelvic in nature. The development of effective
adjuvant therapies should be considered a priority in this subgroup
of women. Historically, radiotherapy has been the mainstay of
adjuvant treatment for endometrial carcinoma. Because of the
tendency for UPSC to recur within the peritoneal cavity, most
investigation of radiotherapy for early-stage adjuvant treatment has
focused on whole abdominal radiotherapy incorporating a pelvic
boost (WAPI). Kwon et al. reported on 23 women with stage I
UPSC (only one surgically staged) treated with WAPI, none of whom
received chemotherapy. Five-year survival was 78.3%, but all
recurrenceswere within the radiated field. An additional retrospective
report by Lim et al. described 43 women with clinical stage I UPSC
treated with an adjuvant WAPI protocol. Of 10 patients that
recurred, 7 did so within the field of radiation.

A retrospective study by Huh et al. reporting a group of 60 women
with stage I UPSC is unique in that all were comprehensively surgically
staged. Post-operativemanagement consisted of observation alone
in 40 women (66%), adjuvant radiotherapy in 12 women (20%),
adjuvant chemotherapy in 7 women (12%), and a combination of
radiation and chemotherapy in 1 woman (2%). The radiation delivered
was WAPI in 3, whole pelvic and brachytherapy in 5, and vaginal
brachytherapy alone in 4 women. The risk of recurrence and overall
survivalwere equivalent between those that received either no adjuvant
therapy or radiation therapy alone (17 vs. 16%, and 66 and 59%,
respectively) prompting the authors to question the benefit of radiotherapy
in women with surgically staged UPSC confined to the uterus.

The GOG completed the only prospective study of adjuvant
radiotherapy in women with early-stage UPSC. Twenty-one
women were treated with WAPI consisting of 3000 cGy at 150 cGy/
day to the abdomen and a pelvic boost of 1980 cGy at 180 cGy/day.
Eight of 19 evaluable patients died of recurrent UPSC, 5 of whom
had recurrent disease within the radiation field. The authors
concluded that other adjuvant approaches, namely chemotherapy,
perhaps in combination with radiotherapy, should be evaluated in
this population.

Based on the propensity for peritoneal recurrence in women with
UPSC, Fakiris et al. performed a unique study to evaluate the potential role of adjuvant treatment with intraperitoneal radioactive phosphorus
(32P). Seventeen of the 21 patients were stage I–IIB, and
all had undergone comprehensive surgical staging including maximal
cytoreduction with no residual disease N3 mm. Recurrences included
two intraperitoneal and two vaginal. The vaginal recurrences
prompted addition of vaginal brachytherapy to the regimen, after
which no additional vaginal recurrences were noted.

The high frequency of distant recurrence in stage I UPSC, along with
treatment failures within the radiation fields, has led to increasing use
of adjuvant chemotherapy and reports of its success. For example, in
the above noted study by Huh et al., none of 8 women whose adjuvant
treatment included chemotherapy experienced recurrence.
Dietrich et al. reported their use of platinum-based adjuvant
chemotherapy in 29 women with stage I UPSC. Treatment
consisted of carboplatin (AUC 6) and paclitaxel (135–175 mg/m2) in
21 women. All were alive without evidence of disease 10–138 months
after treatment. One vaginal recurrence after 3 cycles of adjuvant
chemotherapy was successfully treated with chemo-radiation.
In the largest retrospective series in the literature on women with
surgical stage I UPSC (n=141), Fader et al. demonstrated that while
early-stage patients have a significant risk for extra-pelvic recurrence,
recurrence and survival outcomes were significantly improved in
patients *****ceived platinum/taxane chemotherapy±radiotherapy
compared to women who received no adjuvant therapy or radiotherapy
alone [87]. Women treated with platinum/taxane-based
chemotherapy had a significantly lower recurrence rate (11.2%)
when compared to patients who did not receive chemotherapy
(26.9%; p=.021). This effect was most pronounced in women with
stage IB/IC UPSC. On multiple logistic regression, only chemotherapy
and substage impacted recurrence. Progression-free and causespecific
survival for women treated with chemotherapy was more
favorable than for women who did not receive chemotherapy
(p=0.024 and 0.081, respectively). Again, this difference was most
pronounced in stage IB/IC UPSC (p=0.003). The overall recurrence
rate in this study (17%), along with the finding that most recurrences
were not salvageable (91.7%), suggests the need for improved systemic
therapy in the treatment of early-stage UPSC as well as improved
second-line agents.

A retrospective, multi-institution study including 83 womenwith stage I
UPSC concluded that observation could be considered in patients with
stage IA disease. Although UPSC recurred in 3 of 32 women (9%)
with stage IA disease, only 1 of 22 stage IA women (5%) who
underwent observation alone experienced recurrence. Recurrence in
stage IB/IC disease occurred in 15 of 51 (29%) of women. Similarly,
Thomas et al. proposed that women with comprehensively surgically
staged IA UPSC should undergo observation, while adjuvant chemotherapy
and vaginal brachytherapy be considered for those with
stage IB and IC disease [97]. No recurrences were detected among the
15 women with stage IA UPSC, regardless of post-operative management
but distant recurrence was noted in 3 of 13 women (23%) with
stage IB and IC UPSC who did not receive any adjuvant chemotherapy.
Alternatively, in the series by Fader et al. which included 55 women
with surgical stage IA UPSC, three of 21 women (14.3%) who did not
receive adjuvant therapy (radiotherapy alone or chemotherapy±
radiotherapy) recurred within 2 years [87]. Two of these women died
of disease following extra-pelvic recurrence.

RECOMMENDATIONS:

• Comprehensive surgical staging should be performed when
feasible in all women diagnosed with UPSC. In addition to simple
hysterectomy, bilateral salpingo-oophorectomy, pelvic and paraaortic
lymphadenectomy, and washings for cytology, performance
of omentectomy and peritoneal biopsies should be considered
given the propensity for UPSC to metastasize within the peritoneal
cavity.
• Adjuvant therapy, including platinum-based chemotherapy and
vaginal brachytherapy, should be considered in women with stage I
UPSC.
• The relatively favorable prognosis of women with stage IA UPSC
with no residual uterine disease after comprehensive surgical
staging may justify close observation alone. However, adjuvant
chemotherapy and vaginal brachytherapy should be considered in
other stage IA patients.
• Women with advanced-stage UPSC are best treated with optimal
cytoreduction of metastatic disease followed by adjuvant platinum-
based chemotherapy (carboplatin and paclitaxel or cisplatin
and adriamycin).
• Careful long-term surveillance following treatment is indicated
given the higher rate of recurrence in UPSC patients compared to
those with EEC.

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

Hi Patricia,

I respect your individuality. You are more courageous than me. I was diagnosed with stage 3a UPSC Sept 08 at age 61. I had no symptoms and it was found when apparently a cyst broke and the pain took me to the ER. After diagnosis, I was recommended to get the 6 rounds of chemo and opted for a 2nd opinion before starting anything.

I recommend you look at the NCCN guidelines for treatment protocols. ALL papillary serous is considered HIGH RISK. Stage 1a is the only one where observation is even suggested as an option. For stage 1b THROUGH 4 they recommend chemo and/or radiation.

I did traditional treatment (chemo) PLUS integrative (healing touch, guided imagery, meditation). I do know of people who have had miraculous results without traditional treatment but I guess, I'm not brave enough for that. I did have very good treatment response. It's been nearly 6 months since completing chemo (I didn't get radiation) and so far I'm NED. I feel and look good - everyone keeps telling me. I'm getting stronger every day. Not everyone has a bad response to chemo - I worked through mine.

It's good to know the pros and cons of each decision. I wish you the best.

My email is daisyelder@comcast.net

Mary Ann

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

The steroids you take with your chemo realy make you ravenously hungry and also cause you to retain fluids, so many women gain weight over the months they have chemo. My new 'enhanced' appetite was compounded by a lack of exercise over my treatments. (Pre-cancer I always went to the gym 6 days a week and did 10 miles/day on the ellyptical. I was too tired and busy during treatment to go to the gym and so the calories I ordinarily burned off turned into a soft round belly.) They kept encouraging me to NOT diet or worry about my weight during treatment and I didn't. I was BALD; having a flat stomach didn't seem like it would make me look sexy, you know? During pelvic radiation my appetite disappeared, and although I ate the recommended 'soft diet' for radiation, I still lost 8 of the 15 chemo pounds I'd put on. Now that I am out of treatment, I am trying to lose the remaining chemo pounds,...but don't worry about your weight now.

The most important thing you can do for yourself during chemo is to eat a high-fiber diet: a good breakfast of high-fiber cereal with fruit and nuts tossed in; a dark green salad for lunch with more fruit and nuts in ths salad; lots of raw veggies and fruits and whole grains; and 64 ounces of water each day.

kansasgal's picture
kansasgal
Posts: 117
Joined: Aug 2009

Following my annual PAP with my PCP showing cells suspicious for endometrioid adenocarcinoma and a follow-up D&C with a gyn/onc showing endometrioid adenocarcinoma FIGO grade 1, I had a complete hysterectomy April 22 which included the removal of 9 lymph nodes and a pelvic wash but did not include removal of the omentum. My discharge pathology showed stage 1-B grade-2 endometrioid adenocarcinoma and the gyn/onc indicated no further treatment needed.

I received the UPSC diagnosis May 19 at my one-month post-surgery check-up. Quality review of my slides found the additional UPSC in two places in the uterus. It was staged at 1-A grade-3. The gyn/onc told me the treatment would be 6 rounds of chemo which needed to begin within the next 2 weeks or so. He said UPSC used to be treated with radiation but chemo was the current treatment standard and offered a better long-term outcome. I told him I needed to do some research and get back to him with my decision. He scheduled an appointment to see me in 2 weeks.

I spent a couple of sleepless nights reading everything I could online and contacting many people (including some doctors and even cancer specialists) near and far to help me make an informed decision on treatment (or not).

I VERY SERIOUSLY CONSIDERED NO FURTHER TREATMENT.

I found the paucity of clinical trials appalling. My PCP scheduled an end of the day appointment with me and my husband and reviewed all of the info I had found and tracked down "doctor only" info online while we met with her. We were at this appointment for about 2 hours.

By the time I located and met with a gyn/onc in another state for a second opinion (he recommended adding radiation to the chemo), I had already decided to move ahead with chemo. I had my first infusion a few days after the 2nd opinion and after meeting with a local rad/onc. Now I am in my third round of chemo. I have another consultation scheduled with the rad/onc next Monday. Then I will decide whether or not to do the 4 rounds of brachytherapy currently scheduled to start August 24. Then another round of 3 chemos will be scheduled.

If I had been staged anywhere but 1-A I FEEL (though one can never be certain!) that the decision to move ahead with treatment would have been much clearer.

The statistics are what they are. No one really knows the future for any single patient.

Sally

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

I had 25 lymph nodes removed when I had my surgery, with microscopic cancer found in only 1 node. I often think, 'what if they'd only removed 24 nodes and left that one in? I would have been incorrrectly staged and have active cancer still in my body. That concern would be enough to sway me towards having the chemo and radiation. But that's me. You have such a good chance for a CURE, NEVER to have cancer again with your Stage 1 diagnosis. I'd want to have that incredible peace of mind that I will never have again with my Stage III-c UPSC diagnosis. I have no long-term side effects from my chemo and radiation, so it is easier for me to be positive I did the right thing than it must be for those who have lasting side effects from their treatments. That's what makes the decision so hard. But the small size of your lymph node sampling would probably tip me into all-out aggressive adjuvant chemo and radiation. ((((BIG HUG))))). I don't envy you your decision.

deanna14
Posts: 734
Joined: Oct 2008

After everything that I have read about UPSC, I think at any stage I would choose to do the most aggresive treatment available. Of course, that is easier for me to say since I am finished with treatment. I was also stage IIIC.
I agree with Linda, I don't envy your decision. My personal thought is I had to know that I had done everything I could to prevent a reoccurance.
God Bless and Good luck with your decision.

kansasgal's picture
kansasgal
Posts: 117
Joined: Aug 2009

The tipping point for me was exactly that! The gyn/onc was, of course, not thinking of UPSC at the time of my surgery or he would have removed more lymph nodes and the omentum as well.

The reason I am leaning strongly toward vaginal brachytherapy is the fact that the UPSC was found in 2 places in the uterus, and one of those places was where the "top" of the cervix meets the neck of the uterus. I can't help but think that UPSC cells could have migrated through the cervix to the vaginal cuff region. The rad/onc at my first visit agreed with me that this seemed like a possibility and it seemed reasonable to use radiation in this area. We will discuss this again on Monday. Hopefully by then he will have completed his research!

Thanks, Linda, for your input.

Sally

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

I almost skipped the vaginal brachy because I so feared compromising my sex life long-term. I CRIED about it!! Now, 6 weeks after my last bracy treatment, I know that I made the right decision to go ahead and have the brachy. I use a vaginal dilator daily (and be SURE and talk to your radiation oncologist about that since many of them never bring it up!) now and I am just fine sexually. So don't let the 'scar tissue' fears keep you from brachy; you can be proactive about the healing process and come out of this unscathed. And if you had any cancer cells anywhere in the lower region of your reproductive system, brachy is an important treatment consideration. I know that UPSC cells 'migrate' downward, as my cancer was initially suspected when a 'migrating' UPSC cell showed up on a routine annual PAP test. That's what made me decide to have the brachy radiation, even though my cancer was all up higher. So I did both, external pelvic (because I had 1 removed lymph node with cancer cells) and internal brachy; in addition to the chemo.

susie1143's picture
susie1143
Posts: 109
Joined: Aug 2009

I have just been recently diagnosed with uterine cancer. The D&C was completed on July 24th. I am scheduled for surgery on the 26th of Aug so at this time we're not sure if it has spread. The doctor is removing everything since the cell grade is a 3 and is very aggressive. He hasn't told me what treatment will be necessary until after the surgery but I'm pretty sure chemo and radiation will be in my future. My mother is in remission from breast cancer and an aunt died of lung cancer so as a prior caretaker I know the routine. I'm 48 so most of my symptoms appeared to be menopause related and the only way we found it was an abnormal pap test followed by a D&C. The D&C was not even completed due to the location and size of the cancer mass

Any advice would be helpful. I've done research but until I have my surgery I won't know what stage I'm in. I've already went to the local Cancer Society and got wigs, etc for chemo since the cells are Grade 3.

kansasgal's picture
kansasgal
Posts: 117
Joined: Aug 2009

As soon as I had the PAP test result I was ready to skip the D&C and move straight to a complete hysterectomy the next day. Of course it does not work that way. Waiting is the pits! I always say, "Just tell me the worst, and I'll deal with it! Please don't make me wait and speculate!"

A BIG HUG while we wait impatiently with you for the pathology report following your surgery. That will help guide your future choices.

Sally

susie1143's picture
susie1143
Posts: 109
Joined: Aug 2009

Thanks for your support. You're absolutely right about waiting. It seems like forever before Aug 26th is here and I know more about the stage and treatment options. I'm doing a lot of research about uterine cancer but it's hard since I don't have more information until that surgery.

deanna14
Posts: 734
Joined: Oct 2008

Have you read the article Claudia posted about heated chemo in the peritoneal/abdominal cavity at the time of surgery? It is mainly talking about using this method if there is a reoccurance and a second debulking surgery. Might be worth talking to your gyn/onc if it is possible to do it with the initial debulking surgery.
God Bless you!

susie1143's picture
susie1143
Posts: 109
Joined: Aug 2009

Thank you for the information. Where is the article? I only signed up today.

california_artist
Posts: 850
Joined: Jan 2009

I thought anyone looking here might be intersted in this.

Cytoreduction and intraperitoneal heated chemotherapy for the treatment of endometrial carcinoma recurrent within the peritoneal cavity
C.W. HELM*, C.R. TOLER*, R.S. MARTIN III†, M.E. GORDINIER*, L.P. PARKER*, D.S. METZINGER* & R.P. EDWARDS*
Divisions of *Gynecologic Oncology and †Surgical Oncology, James Graham Brown Cancer Center, University of Louisville, Louisville, Kentucky
Correspondence to C. William Helm, MD, Division of Gynecologic Oncology, James Graham Brown Cancer Center, 529 South Jackson Street, Louisville, KY 40202, USA. Email: cwhelm@uoflobgyn.com
Copyright 2007, Copyright the Authors Journal compilation
KEYWORDS
cisplatin • hyperthermia • intraperitoneal chemotherapy • IPHC • recurrent endometrial cancer
Helm CW, Toler CR, Martin RS III, Gordinier ME, Parker LP, Metzinger DS, Edwards RP. Cytoreduction and intraperitoneal heated chemotherapy for the treatment of endometrial carcinoma recurrent within the peritoneal cavity. Int J Gynecol Cancer 2007;17:204–209.

ABSTRACT
Abstract.
Our experience with hyperthermic intraperitoneal chemotherapy (IPHC) in conjunction with surgical resection for endometrial cancer recurrent within the abdominal cavity was reviewed. Eligible patients underwent exploratory laparotomy with the aim of resecting disease to ≤5 mm maximum dimension followed immediately by intraperitoneal perfusion of cisplatin (100 mg/m2) heated to 41–43°C (105.8–109.4°F) for 1.5 h. Data for analysis was extracted from retrospective chart review. Five patients underwent surgery and IPHC between September 2002 and January 2005 for abdomino-pelvic recurrence. Original stage and histology were 1A papillary serous (1), 1C endometrioid with clear cell features (1), and 1B endometrioid (3). Mean age was 61 (41–75) years, mean prior laparotomies were 1.4 (1–2), and mean chemotherapy agent exposure was 1.6 (0–4). Mean time from initial treatment to surgery and IPHC was 47 (29–66) months. Mean length of surgery was 9.8 (7–11) h after which three patients had no residual disease and two had ≤5 mm disease. The mean duration of hospital stay was 12.6 (6–20) days. Postoperative surgical complications included wound infection with septicemia in one patient. Mean maximum postoperative serum creatinine was 1.02 (0.6–1.70) mg/dL. There was no ototoxicity or neuropathy and no perioperative mortality. No patients have been lost to follow-up. Two are living disease free at 28 and 32 m and two are living with disease at 12 and 36 m. One patient died at 3 m without evidence of cancer. Two patients who had no residual macroscopic disease at the end of surgery are alive at 32 and 36 m. The combination of IPHC with surgery for recurrent endometrial carcinoma is relatively well tolerated. The unexpectedly long survival seen in this cohort supports a phase II trial of IPHC with cisplatin for recurrent endometrial cancer.

kansasgal's picture
kansasgal
Posts: 117
Joined: Aug 2009

Linda, thanks so much for your detailed post-brachy dilator use tips. I have already printed them out to take with me to my appt Monday.

Linda - I was surprised by, “So far, so good.” I would have expected jumping up and down with joy singing some Hosannas!

Deanna - Wow, you, too have reached a wondrous milestone! BIG, BIG GRIN!

roxiesmom's picture
roxiesmom
Posts: 5
Joined: Aug 2009

other Susie here.
You're waiting for your surgery on the 26th, I'm starting my first chemo this wednesday, the 19th.

I am too new to offer much advice, other than to tell you the worst part of my surgery was waking up. That was a little tough. But once that morphine drip kicks in, you forget all about it.

Bring comfortable walking shoes with gym socks. - And lip gloss, so you look good for visitors.
-Slip on's, but not slippers. That way you can get your sore tummy out of bed and walk walk walk. Everyone else doing their walking rounds pointed at my white slip-on keds, like "Wow - she can really walk". I walked all over that place.
I only had to spend two nights there - all the walking I did got things moving around to let me go home.

I didn't poop for almost a week and thought I was going to die, so don't think you are the only one. If you don't abuse laxatives, post surgery will be the time to realize their usefulness. I ate nothing but fruit and fiber, but that alone was not enough. Don't wait like me until day 5 to realize that you need more help than that.

I had 5 organs removed, but I also have two dogs that didn't care. They made me walk even more- which really helped everything. Do everything you can to stay alkaline. You can get urine-test strips from the drug or health-food store. Since I got the water ionizer, I am peeing alkaline for the first time ever for me.
Don't eat meat, fish or dairy for the immediate future. Get a water ionizer, or drink plain filtered tap water -nothing bottled. And drink a ton of it. Tap water by law has to be ph neutral. None of the bottled waters are - I've seen them all tested. They are all acidic. Some are almost as bad as soda pop which is almost as bad as meat.
No refined sugar. No artificial sugars. No soda pop. Fructose sweetened anything is fine. Nothing with "enriched" flour. For bread - try to stick with whole wheat. I just started all of this because I was actually considering not having chemo. Now I know how stupid that was. I need it, but I also needed some major changes in my diet that cancer has forced me to make. I love barbeque everything, but now I have to be vegan. There are things that we ourselves can do to help kick cancer's ass.

I would rather make my body be so tumor unfriendly that even if a cell slips by the chemo, my body is no longer a good host.

I ate and drank everything cancer thrives on, and gee - what I surprise, I got it.

I just got my wig from the cutest 65ish lady that looks like the owner of a wig shop- She is 14 years post-op, looks like a million bucks, and advised me: "whatever we get - they keep coming up with new things to keep us alive."
She had advanced stage breast cancer and she was never supposed to live this long, but she's great! She had to go back a couple times, but they killed whatever it was each time, and she's a hot mama.

You'll be fine with what you have ahead of you - me - not so sure. Just the thought of nausea makes me nauseous. -ugh!

take care and look forward to hearing how your surgery goes,
bye!
Susie

susie1143's picture
susie1143
Posts: 109
Joined: Aug 2009

Hi Suzie, it's Susie.

Thank you for your advise regarding the upcoming surgery. I'm no stranger to surgery especially in the ab area. This will actually be my 8th surgery in that area. I've had 2 C-sections, left kidney removed (not related to any cancer, due to UTI's), stomach surgery for hernia repair, tubes tied and recently my D&C. Of course with the C-sections I was much younger. I actually surprised the staff when I had my kidney removed because I was up and about very fast so I know that I'll be walking, walking and walking after the surgery.

I've been on the internet looking for diets that will kill the cancer cells. Because I'm always on a diet to lose weight and have PCOS I don't eat many carbs but I need to cut the meat out of my routine. In my case I believe the PCOS is the cause of my cancer. PCOS is short Poly cystic Ovarian Syndrome and only 5% of women have it. I make too much estrogen hence the cancer. Most women with PCOS can not have children but as you can see by previous surgeries I have 2 sons. I do have low sugar so I need the protein. However, lately I've been finding that I don't want beef and have been eating more chicken. I love (low-fat)cheese and eat that for snacks as well as yogurt.

I'm going to take your advise regarding water. I used to have a filter on my tap water but since I moved I haven't brought a new one. I'll do that this week since I do drink a lot of water. (I have to be careful not to overdo since I only have 1 kidney). I like Crystal Lite so I'm going to drink water with lemon juice.

Also, since dieting I eat whole wheat bread, brown rice and lots of vegetables. Doing research some vegetables are know to kill the cancer cells including broccoli, cauliflower, asparagus, spinach which I was eating prior to my diagnosis. I have noticed that I feel much better when I stick to this routine. I don't drink much soda but I do use Splendar instead of sugar. I'm thinking of switching to honey.

Do you or anyone else know if soy is ok? I'm considering replacing my protein with soy but wasn't sure if it is ok.

Since my mother had breast cancer and I was the caretaker, I know the routine. We never thought that we would get through her treatments but here it is 7 years later. I joke with her and said that now it's her turn to take care of me.

For the nausea try ginger (which online I found out also kills cancer cells). You can buy ginger tea at a health food store. Also, talk to your doctor if you have problems with the tummy, they have medicine to help control nausea. Since I had the stomach surgery for my hernia I'm not allowed to get sick. This could prove interesting.

Also, my mother suggested that during chemo you suck on popsicles to help prevent mouth sores. (She was in NJ during her treatment and that's what they told her). She also said that if you get a headache to let the nurse know because they may be doing the chemo too fast. If I need chemo she's going to come with me the first time to give me pointers.

I already went to the American Cancer Society and got 2 wigs and several head covers like scarves. Even though the doctor hasn't told me that chemo is definite he did say that since my cell Grade is aggressive and I'll probably need chemo.

I'm not so much nervous about the surgery, I just want to know if the cancer is anywhere else. The waiting for me is the worst but I have my faith in God that Jesus will carry me through.

Let me now how you make out on your first chemo treatment. God bless you in your upcoming battle.

Susie

cc1212
Posts: 3
Joined: Aug 2009

Hi. I just found CSN a week ago and posted about 5 days ago. Problem is I can't find my post or any possible replies. Will you please help me get on board? Cecile

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