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Anyone with Stage 1a UPSC?

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

When I was diagnosed in March 2008, I began extensive research to determine what I believed to be the most effective treatment and the likely prognosis for this subset of uterine papillary serous carcinoma. Some studies indicate that observation could be considered for this stage, but the most recent study--at MD Anderson--quoted one of the researchers as saying that she would never feel comfortable making this recommendation.

Most studies reported that women with stage 1a who underwent chemotherapy had a 100 percent progression-free survival rate. Of course, most studies have been small; and studies earlier than 2005 are not reliable.

What is the experience of others who have this diagnosis? I have been NED for almost three years (I had chemotherapy and five brachytherapy treatments, which ended in November 2008); and my understanding is that once we hit the two-year NED mark, the recurrence rate drops sharply. Nevertheless, I live as if the cancer is just waiting to pounce again.

I am vigilant about living an anti-cancer life--eating an almost exclusively organic vegetarian anti-inflammatory diet, with plenty of turmeric/olive oil/black pepper added to my food; exercising several times a week; "trying" to keep stress out of my life; laughing often. This is what I will do for the rest of my life, and I would love to be more confident that I can live a long life.

I know I am probably very lucky; and my heart goes out to those women here whose struggles are so much more difficult than mine. This message is meant only for those women who might be in my position.

Love to all,

Jill

california_artist
Posts: 850
Joined: Jan 2009

About the recurrence time for UPSC. If you go to this url and click on the center diagram, you will see a chart on recurrences for outwards up to ten years. UPSC doesn't level off til it gets to the five year mark. We have 1-2 years left to really be diligent. I think, so far we are doing a bang up job.

Love ya,

Claudia

someone posted about her UPSC being grade one, I didn't think that was possible, did I miss something????

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

If you see this, please post the URL. Of course, I plan to be diligent anyway.

My understanding is that UPSC is always grade 3.

california_artist
Posts: 850
Joined: Jan 2009

http://www.ncbi.nlm.nih.gov/pubmed/16495918

Ah??? dah????

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

What do you think about the fact that "Demographic, pathologic, treatment, and survival information were obtained from the Surveillance, Epidemiology, and End Results Program from 1988 to 2001"? Could it be that staging, treatment, and survival information has changed since that time?

california_artist
Posts: 850
Joined: Jan 2009

After doing some research, and finding that carbo was introduced in the '80's and Taxol had been around prior to that, it seems that treatment has not changed for this cancer for over 25 years, which in my estimation, is totally unconscionable.

Why don't they try something different.

You know, the insurance companies and drug companies have got to keep their hands and their profit motives off the treatments for things as important as cancer.

I am frankly quite sick of the whole thing!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I am sick and tired of their games and motives!!!!!!!!!!!!!!!!!!

I quit!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

I hear ya! I'm going to start putting my energy toward getting my onc and his colleagues to read this board. THEN, I am going to start a letter-writing campaign. THEN, I am going to see what it takes to find funding for a study. I haven't got a pot to piss in financially, what with being freelance and unable to work for a while; but I have a mouth and a brain, and I intend to use both.

minniejan
Posts: 88
Joined: Dec 2010

Jill,

I was diagnosed Dec. 2010 USPS grade 3 upon biopsy, and after staging on Dec. 29 was determined to be 1A. I had three chemo treatments (carbo and taxol) and three brachytherapy treatments. My CA 125 three months after treatment was at 6 in June! My pap was clean. My next set of tests will be in September, in the meantime I am leading my life to the fullest, going on three trips in three months and enjoying my life fully. I am lucky I can do this, I admit. I was so low when diagnosed, coming off of taking care of an elderly mother after a couple of years of absolute "hell"

Unfortunately I am not vigilant about living an anti-cancer lifestyle but my outlook is great, I feel I have beat this and I think that a positive outlook is part of the battle, so hopefully that will counteract my non vigilant cancer lifestyle. My personal thoughts are that I will eat as healthy as permits, but I did that before diagnosis as well.

Your message struck such a cord for me that I felt like I had to answer. I too feel lucky this was caught early. I was told I would be followed every 3 months for two years, and after that probably every 3-6 months for the rest of my life. I plan on it being a long long life.

MinnieJan

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

Thank you for responding. I, too, plan on living a long, long life; and the diet I am on--in addition to helping me feel that I am protecting myself against recurrence--has improved my overall health dramatically.

I would love to have a thread that is specific to those of us with UPSC stage 1a, as I think that there are variables that apply only to us.

By the way, right before my diagnosis, I had spent a number of hellish years caring for my mother. It's interesting to consider the impact of that stress on my own health.

Jill

minniejan
Posts: 88
Joined: Dec 2010

Jill,
I spent two years caring for my mother, going back and forth 300 miles from home to do it along with siblings who lived near my mother. She needed total 24 hour care, both physical and emotional. Three weeks prior to my diagnosis we were down to two siblings out of four "still standing." I was one of them and along with my sister we decided to place my mother in a nursing home. Then my diagnosis. Yes, I totally agree about stress and its impact.

MinnieJan

fanniemay
Posts: 52
Joined: Nov 2011

Hi MinnieJan, I just was diagnosed with 1A UPSC this week. Hoping all of us with 1A can keep in touch either on this board or by email.

imackie48
Posts: 88
Joined: Nov 2011

Hi girls, me too 1a, I'm getting 4 chemos Taxol carbo and 2 brachytherapys
What size was your tumor?

Irene

Pat51
Posts: 103
Joined: Feb 2011

I was diagnosed in Feb., 2011 with UPSC stage 1B (old FIGO chart) or stage 1A (new Figo Chart). I have just completed 6 chemo treatments and I am now doing 3 brachytheraphy radiation treatments. I was just told that I would not get a CT scan for another 6 months. I am going to try to maintain a healthier eating style, but my oncologist says that there is not specific diet that will help.

I believe that I will always live worrying about recurrance. My doctor said that I have about a 20% chance of recurrance, but I have no idea where he got those statistics from. This is a better prognosis than I have found in written reports. I also had a very high stress life just before diagnosis. My husband is a stage 4 melanoma patient. I will be going back to work very soon and hope that I can balance the job and stress. It is great that you have been NED for 3 years!! I hope that you have many many more years of a cancer free life.

Pat

cheerful
Posts: 114
Joined: Apr 2011

Hi Pat51:

I too was diagnosed in February 2011 with UPSC. I had surgery on February 1, 2011. I started with chemo in mid April and finished all my chemo treatments the end of August for a total of 6 rounds. I then had 3 rounds of radiation and finished in mid October. I was diagnosed with Stage 1 according to my radiologist and he said my UPSC was nothing more than a large polyp. He said I have an 80 to 90% chance of survival.

I was wondering about the chance of reoccurrence and have been worried about it as well. I know that the chance of reoccurrence is the highest for the first 2 years and then it drops off. I know this is a very aggressive cancer. My oncologist mentioned to me that hopefully my cancer will not return once I complete my treatments. I see my oncologist again for a follow-up the end of January 2012. I will be nervous and will hope for the best during the exam. I probably will have a cat scan in early spring of 2012. I already have had 3 cat scans and they show NO metasis to any other organs which is very good news.

I have a friend with Stage 2 UPSC and she has not had a reoccurrence at all and she finished all her treatments over 3 years ago so I am very encouraged and hopeful.

I joined the UPSC website in April. Please keep in touch. I am 60 years old (diagnosed at age 59 in February) and live in Delaware County, PA.

Cheerful

Pat51
Posts: 103
Joined: Feb 2011

Our stories sound very similiar as well as being very close in time. My tumor was more than a polyp but confined to the inner 1/2 of the uterine wall. Stage 1B by the old FIGO chart and stage 1A by the new charts. I finished chemo in July and radiation in August. I am also 60 years old. I was 59 when I was diagnosed. I live in Wisconsin. UPSC is a difficult diagnosis to handle. I would very much like to stay in contact with you. I have not yet had any follow up tests. I think that I may be scheduled for a CT in late January. My next oncology appointment is Dec. 1 so I will know more then.

Pat

cheerful
Posts: 114
Joined: Apr 2011

Hi Pat:

Yes, I too, would definitely like to stay in contact. My actual name is Jane and I live in the suburbs of Phila., PA (Delaware County, PA). I turned 60 in July.

Where in Wisconsin do you live?

Your right, UPSC is a difficult diagnosis to handle. I do feel though that I have done everything I could have to fight and survive this cancer. It is a bad cancer to be diagnosed with and very scary as well, but thankfully for us and I am very grateful that our cancers were caught at an early stage and our chances of surviving are good. Hopefully, it won't return on either of us.

You started your chemo a lot sooner that I did. With me, my incision opened up after a week and I had to go back in the hospital for 2 additional days and then I had a home health nurse coming to my house to care for my incision for 5 weeks before it was completey healed. Two weeks after it healed, I started with chemo. I feel I have been on a treadmill and rollercoaster ride since January with meeting with my gyn, then the surgery, meeting with my oncologist, and then healing of my incision and then starting chemo and then radiation so just about all this year I have been dealing with surgery and then cancer. My doctors are great and I feel they did so much for me and I greatly credit both my gyn and oncologist for saving my life. My radiologist was very nice as well and I saw him a week ago for a follow-up visit.

I see my oncologist the end of January for a follow-up visit and exam. My oncologist has 35 years of experience and is very knowledgeable about UPSC. He is known locally and nationally as well.

In the meantime, I can enjoy the holidays with my family and friends. On Thanksgiving, I do have a lot to be thankful for.

Anyway, good luck with your oncologist appt. on December 1st and let me know how it goes.

I just read that it takes about 6 months before you get your energy back on one of the sites on this board after completing your treatments. I am still very tired and I know it will take more time before I regain my strengh and energy. I did speak to an oncology nurse at the American Cancer Society and she mentioned to me a person won't have the same stamina they did before they were diagnosed with cancer and then having treatments.

Keep in touch.

Cheerful (also known as Jane)

Pat51
Posts: 103
Joined: Feb 2011

I live in east central Wisconsin. I turned 60 in June.

I, too, am grateful for having caught the cancer early but the chance of recurrence is higher than with other uterine cancer. I had robotic surgery done and had a faster recovery than abdominal surgery. The robotic surgery was extensive. My surgery took 7 1/2 hours. My GYN is very good. There is no GYN-oncologist in my area and my oncologist has not seen many cases of UPSC. He has consulted with a GYN oncologist from Milwaukee.

I am just starting to feel more normal now and gaining more energy. Being able to walk around has made me feel more normal. I was so fatigued during treatment that walking was difficult for me. I have just started working full time again, but I do get really tired. I am still suffering other rare side effects but getting better all the time.

My email is basketaddict@charter.net. I would love to keep in contact with you. We can compare notes since our situations are so similar.

I hope that you have a Happy Thanksgiving.

Pat

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Got my diagnosis October 2011, had surgery 2 weeks ago, and my incisions infected so we haven't even started talking about chemo/radiation- heck we don't even know when I can get the staples out! Nice to know I'm not alone in this thing and would love to keep in touch with all of you

Liz in Dallas, TX

Hilajoan's picture
Hilajoan
Posts: 15
Joined: Nov 2011

I'm not quite sure yet, till I see the oncologist, but it seems I am joining the party - see below.

Had breast cancer and mastectomy in March this year. Not quite reconciled to that when started bleeding down below and saw gynae who passed me on to surgeon/oncologist; found a cancer in the ediometrium. He operated 8 days ago - radical hysterectomy and yesterday he told me it was a Stage 1 carcinosarcoma, Grade III. If I understood him correctly, he said it doesn't respond to Chemo, it's not hormonal so no hormone treatment, and radiation limited in its use. Can radiate the vagina, and might radiate the bladder and/or bowel with adverse effects. Had been due to have an appointment with the breast cancer oncologist, to discuss further treatment after hating Arimidex effects - that's on hold for now. I have to see gynae oncologist on Thursday, probably to discuss what to do. Interested to read that others ARE having Chemo. I guess I'll keep you all posted, if you want to hear? HilaJoan.

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

..is what your oncologist needs. Standard treatment for Carcinosarcoma is chemo and pelvic radiation. I'm not sure what radiating the virgina means unless he is talking about brachytherapy which is internal radiation.

I am currently getting radiation...12 rounds complete, 13 more to go, so far no side effects. I will also be getting internal radiation and am half way through my chemo treatments.

I know that some studies have shown that brachytherapy is sufficient and no pelvic radiation is needed so perhaps because of your early stage that might be a better option for you and you may not NEED chemo, but that is completely different then saying chemo and radiation doesn't work on this kind of cancer.

Just because its rare doesn't mean it's untreatable and with your early stage, certainly it's curable.

I think I'd be seeking a second opinion.

Take care,

Cindy

PS - you might want to start a discussion thread of your own to get more responses. Your post here is kind of lost in the sea of other posts about a completely different type of uterine cancer.

txtrisha55's picture
txtrisha55
Posts: 422
Joined: Apr 2011

Carcinosarcoma is what malignant mixed mullierm tumor or MMMT use to be called. It is different than the UPSC but still concidered Uterine Cancer. I was found to have carcinosarcoma in March this year. Already had the surgery and 6 rounds of Carbo/Taxel Chemo treatment. I did not have any radiation. I have limited knowledge but I would possibly get a second opinion because it is treatable. I was a stage 3C1. Not sure of the grade. I am in Dallas, TX and going to the UT Southwestern Cancer Center which is NCI regonized. You can ask for an assay of the tumor and it should tell which Chemo it will respond too. Learned that information on this site from several ladies. I did not have that done because I did not know that I could ask for it.

Bottom line is ask lots of questions and if you do not like the answers ask for a second opinion. Will add you to my pray list for all the women on this site. trish

sleem
Posts: 92
Joined: Feb 2010

My doctor stated that years of survival can be counted 2 ways: from surgery diagnosis or last chemo. That we should always look at study or chart from when this counting starts. If I count from my surgery, it will be three years this Sept. or from my last chemo, Jan. 12'. My CA has been rising since last Nov. 2010 and jumped at my March 2011. I too and hoping my CA 125 is still under the 35 CA 125 normal range this coming Sept. and that it has stablized and not jumped again. I worry too and feel very concerned that my CA 125 left the teens for the first time 6 months ago.
CA 125's have different makers and different 'normal' ranges. I had a test locally which had a normal range of 21 and mine was 16 with that one. Still my doctors have not set alarms off. I understand about false + and - readings from it and that this test is for ovarian & not really for uterine. I hope I am still NED this Sept through Jan. 12, either way, some would say 3 years NED. I too wish everyone could have been this stage at their time of diagnosis. My first doctor kept me almost 9 months from a correct diagnosis. My current Dr. said my own knowledge got me there early & helped improved my chances.
Keep up the news about nutrition and anything more that helps all of UPSC women.
Truly grateful for all your help.

fanniemay
Posts: 52
Joined: Nov 2011

Hi Jill, I have stage 1 UPSC. You are just the person I have been looking for. I had my surgery Monday and Found my staging was 1A which means it was contained in the Uterine wall. I have been wondering what treatments are the most useful. My oncol asked me to be part of a random study. I would have no choice of which study I would be in, It is either 28 pelvis radiation therapy w/vaginal cuff boost or the other study is vaginal cuff brachytherapy plus 3 cycles of chemo to start within 3 weeks of brachytherapy. I can also not be part of the study and just go by what my onco recommends. Please tell me how many rounds of chemo you had. Maybe we can keep in touch via email and see how one another is doing. Regards, Fanniemay

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

Hi, Fanniemay:

As you probably know, the prognosis of someone with Stage 1a UPSC is generally good. That is not to say that I would recommend continuing to live your life the way you did before diagnosis. For me, changes in my diet and level of exercise have been critically important to my health and to remaining NED. The best advice I can give you is to read through the threads on diet, consider incorporating more anticancer foods, and up your level of exercise and stress-fighting activities (e.g., yoga, meditation, laughter).

Your treatment decisions depend on so many things. If it were I, I would read as many studies as I could find (as Claudia says, "Google is your friend"); research every option, its success rate, and its side effects; and ask your oncologist as many questions as you can think of. I would hesitate to be a guinea pig in the study you describe: the side effects from 28 rounds of pelvic radiation are much more significant than those from vaginal brachytherapy; and I would imagine that the study is being done because no one has yet proven that pelvic radiation is MORE effective than brachytherapy for Stage 1a. I and most of the women here who have had brachytherapy would describe it as having no or minimal side effects. Please remember, though, that I am NOT an oncologist; so be sure to determine WHY your doctor asked you to participate in the study.

I am not spending as much time on this board as I used to, but I should be able to respond to your posts within a couple of days. In the meantime, good look and know that there are quite a few women here with UPSC who are doing just fine. I had six rounds of carbo/taxol and five brachytherapy treatments and have been NED since ending treatment in November 2008.

Regards,
Jill

fanniemay
Posts: 52
Joined: Nov 2011

Jill, Thank you so much for posting what treatments you had and what kind of lifestyle changes you have made. Is there a certain book you would recommend that has anti-cancer fighting foods and diet? I have read that shark cartilage and flax seed are also good. I definitely am going to get the tumeric/black pepper/olive oil going. I can put that on my whole grain toast every morning. Exercise and stress free lifestyle is also important. Have cut out most sugar and white flour, and soda so far. Any other insite you might have would be greatly appreciated. Regards, Edith

minniejan
Posts: 88
Joined: Dec 2010

Hello,

I had UPSC stage 1A (Dec 2010 surgery) and I had three chemo treatments three weeks apart (carbo and taxol) and between the chemo treatments I had three brachytherapy radiations, so I was done quickly, but my blood levels were terrible, and had to have blood transfusion. I was beyond exhausted. At the time I did not question it, but the normal protocol appears to be 3 chemo treatments, then radiation, then three more chemo treatments. I was not part of a study. So far, depending upon how this is counted, I am six months NED with my next appointment January 2011. Perhaps the upside to my treatment is that I was done quickly, but am still suffering from tiredness.

Best wishes on your treatment.

MinnieJan

fanniemay
Posts: 52
Joined: Nov 2011

Hi, I see my surgeon on Thursday. The radiologist did also recommend the 3 internal treatments and I'm thinking my surgeon will recommend the 3 chemos. I have also heard chemo does a real job on your immune system. I am going to buy a big bottle of hand sanitizer and put it right by my front door for anyone that comes over to use. Hoping not to get any kind of cold or flu after chemo. Thanks for letting me know about the exhaustion; cause I thought with only 3 it might not be that bad....but I will do whatever the drs. recommend. today I see the gastrointestinal dr....need a colonoscopy and maybe a stomach scope. My bowels had been acting up, but are a lot better since taking probiotic. Please keep us updated. Thanks, minniemay

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Had my laparotomy on November 7, and after a few setbacks (incision infection, but not bad enough to send me back to the hospital - just to my own personal loony bin) started the first of 3 rounds of chemo this week. Chemo was actually relaxing (in between massive bouts of peeing!) and two days later I'm a bit sore and tired but not as bad as anticipated. I'll have two more rounds of chemo and then internal radiation.

imackie48
Posts: 88
Joined: Nov 2011

Hi Liz, I had my surgery November8th, robotic type. I was, starting my chemo in Jan., do you still have discomfort in your abdomen? I thought I would be doing better by now, the Doc says it's inflammation of the tissues and it's normal. I am dreading Chemo, I know there are so many side effects. I have been scheduled for 4 treatments. I have drinking high protein energy shakes now to gain some weight, I anticipate losing weight.

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

My first chemo was 5 weeks post surgery - which in turn was 3 weeks post-robotic hysterectomy. I bounced back really well from the hysterectomy but was glad to have more time between surgery #2 and chemo. Chemo itself was easy but it's true that you don't really feel the impact for a couple of days. It's no walk in the park (bone pain, fatigue, bone pain, constipation, did I mention bone pain?) but so far I've been able to get through it. I'm resting a lot, trying to eat well and stay hydrated, and not pushing myself. The hydrcodone let's me get out and about for a couple of hours each day, otherwise I'm fine hibernating under a blanket. You'll get through it - I promise!

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

My first chemo was 5 weeks post surgery - which in turn was 3 weeks post-robotic hysterectomy. I bounced back really well from the hysterectomy but was glad to have more time between surgery #2 and chemo. Chemo itself was easy but it's true that you don't really feel the impact for a couple of days. It's no walk in the park (bone pain, fatigue, bone pain, constipation, did I mention bone pain?) but so far I've been able to get through it. I'm resting a lot, trying to eat well and stay hydrated, and not pushing myself. The hydrcodone let's me get out and about for a couple of hours each day, otherwise I'm fine hibernating under a blanket. You'll get through it - I promise!

MTheresa
Posts: 6
Joined: Mar 2013

Don't stop posting!!  It's too important since information is lacking on this particular cancer.  I appreciate it all.  I'm stage 1A grade 3 and will find out my specific treatment this week, although I know it is paclitaxel carboplatin and brachytherapy.  Everyone is helpful to me.

 

debrajo's picture
debrajo
Posts: 724
Joined: Sep 2011

yep, me too. 1a grade c(111) upsc, dx july 26, 2009.  Six rounds taxol/carboplatin and five brachytherapy.  Finished May 8, 2010 and NED ever since.  I'm at M.D. Anderson, also.  If I had of found this site IN THE BEGINNING i would have done much better.  I didn't land here til four months after joining my main squeeze, NED!  Best, debrajo

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

It has been a while since those of us with Stage 1a UPSC have checked in with each other. How is everyone? Next Wednesday, I will be going for my last six-month checkup. It is five years since my surgery; and provided that everything looks good, I will be released to a regular gynecologist and back to once-a-year appointments. I'm anxious about this appointment but probably because I tend to be superstitious. I feel fine and continue to eat an anti-cancer diet and walk about 15 to 20 miles a week.

If you are in this subgroup of women with UPSC, please check in.

 

Jill

 

 

 

ConnieSW's picture
ConnieSW
Posts: 537
Joined: Jun 2012

I hope I do as well.  Iam UPSC 1A, 1 year since surgery, 8 months post chemo and am currently NED.

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

Thanks for letting us know how you are. You should be dancing with NED forever!

cheerful
Posts: 114
Joined: Apr 2011

Jill, I am really happy to hear that you have reached your 5 year mark of being cancer free and congratulations to you as well.  You must be so proud and very happy. Continued success and best wishes for the future.

In response to your post, I am 2 years out since my diagnosis from February of 2011.  I went to see my oncologist last week and he said from my exam that it looks normal for which I am happy and thankful. So far, so good.  I still have this year and a couple of years to go still but will continue to hope for the best.  I know how scary of a diagnosis this disease is and in the beginning, I did not know if I would live or die.  But I had a positive attitude all along and that has what has kept me going.  I also have a very strong support system of friends and family and got so many well wishes when I was first diagnosed and going through chemo and radiation.  I am very grateful for each day that I have and live life to the fullest since my cancer diagnosis changed me.   

My oncologist took a pap smear for which I will call for the results in a couple of weeks.  I also need to have blood work done in May and a cat scan in June. I am hoping for good results.  I just hope that I can continue to remain cancer free.  I have changed my eating habits for the better since getting diagnosed with cancer.

 My son is a very Big inspiration for me and has been helping me with better eating habits.  My son lost about 120 lbs. from cycling over the past 4 years and he looks really great.  He weighed about 260 lbs. in 2009 and is now down to the mid 140 level in 2013.  He lost weight each year and has cycled over 18,000 miles and is 18 years old. He eats well and still cycles every day or as much as the weather allows him to.

Good luck to you in the future, and may you enjoy life and please keep in touch.

Cheerful

 

debrajo's picture
debrajo
Posts: 724
Joined: Sep 2011

Hi Jill, I'm 1a UPSC and I'm still here also.  If everything is ok come May 22 I will be three years clear out of chemo.  I'm doing well, no real problems(still the same old ones!)I was dx July 26 2009.  Best to everyone, Debrajo

minniejan
Posts: 88
Joined: Dec 2010

Hi, Two years NED tomorrow I go for my two year checkup!  Have had some issues (posted another thread yesterday about uncontrollable bleeding) and a new unrelated cancer, but so far I am beating stage 1A UPSC.  A huge congratulations on the five year mark! Do you remember after your two year mark how often did you go back for checks?  I was told I go from every three months to every 4 months until 5 years.  Again, congratulations!

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

Congratulations on reaching the two-year mark. As you probably know, recurrence risk starts to go down at this point.

I'm sorry that you are having problems related to the vaginal brachytherapy, but from what I have read, the silver nitrate is effective in stopping the bleeding. I hope you have no further problems and are able to thoroughly enjoy your upcoming vacation.

I started seeing my gyne-oncologist every six months after two years. 

 

All the best,

 

Jill

 

 

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

May you have a LONG and happy life with your main squeeze, NED.

 

Hugs,

 

Jill

sunflash's picture
sunflash
Posts: 142
Joined: Aug 2011

Hi Jill,

Big congratulations on hitting the 5 year mark! What a great accomplishment for you!

I was diagnosed with stage 1A in June of 2011, so I'm nearing 2 years since my diagnosis and surgery. Chemo was finished in November of 2011, so I'm about 16 months post chemo. So far...........so good! I feel great and am still working full time as a teacher.

I can't wait to say I've reached the 5 year mark!! :)

Thanks for letting us know you're doing well.......it gives me a lot of hope.

 

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

Cheerful and everyone else who posted--

 

Adopting an anti-cancer diet and getting regular exercise are the two most important reasons why I am feeling so good now. I avoid sugar; eat lots of vegetables and fruit; substitute grains like quinoa, spelt, and kasha for white rice, wheat, and white pasta; eat fish and a bit of chicken; have yogurt every day but avoid all other dairy; drink almond milk; and walk at least 15 miles a week. The additional benefit is that I've lost 35 pounds, which I've kept off; lowered my total cholesterol by 40 points; and got off all meds (I was on medication for hypertension but got my BP into normal range). Of course, I cheat every once in a while. I live in NYC and am a major foodie.

So, I wish everyone a long and happy life.

 

Hugs,

 

Jill

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

5 years since surgery is wonderful.  You have worked very hard to reach that milestone.  Keep up the good work.

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

You've been an inspiration to me for all of these years. I hope you are doing well.

 

 

Jill

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

aniversary time. As of yesterday I`m 5 (in words five) years from diagnosise. I didn`t see any kind of oncologist for almost 3 years and I`ll continue with that. Since radiation "treatment" I have problems with hips and tailbone, but according radiaologist oncologist this is not from radiation and even if my GP asked him to see me, his majesty radiologist/oncologist refused to see me.

In other words if you are looking for helping hand you can find it at the end of your arm.

But otherwise I`m find, no drugs, no glasses, all 32 teeths. 

Wish you all same outcome.

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

Happy five-year anniversary to YOU.

 

xo

 

Jill

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

What a wonderful thread to read. So happy for all of you. Jill your positive and healthily lifestyle
Is paying big dividends.

Big hugs. Keep dancing! Mary Ann

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

When I first joined this board, I read lots of the information you shared about an integrative approach to treatment. I considered everything that you and your doctors had to say, and I began reading about visualization, qi gong (sp?), diet...and so on. You are one of the major reasons why I was determined to do my own research.

I am sorry for the bad times you have been through lately and hope that you are going to feel better, stronger, and more positive every day.

 

Fondly,

 

Jill

susangr
Posts: 58
Joined: Oct 2010

I am 2 years 2 months out from treatment for UPSC with lymph vascular space involvement.  So far still NED!  I appreciate all the great information from all the women past and present who have this cancer and have contributed to providing current information on treating this disease. This idea of role call is excellent as it helps to give hope to an otherwise seemingly bleak prognosis. Thanks Jill  sincerely Susan

pinky104
Posts: 46
Joined: Feb 2013

I'm someone who is a UPSC survivor, checking in.  I was 61 at diagnosis.  I had surgery in Albany , NY in May of 2010 for stage IVB UPSC. I had a hysterectomy, bilateral salpingo-oophorectomy, omentectomy, and removal of a small amount of cancer in my ilium.  I also had an appendectomy and cholecystectomy in the same operation.  I had been told that I was to have robotic surgery, but the day of the procedure, the doctor had just looked at my CT scan (done at another hospital), and said he couldn't do it that way.  I was originally told by my OB/GYN (a different physician from the surgeon) that I just had a "Big Ole Polyp" that would be benign, but after D&C, he changed his tune.  Anyway, all my lymph nodes that were sampled were found to be benign.  I was told that I had stage IVB because the cancer had spread out of the pelvis.  I was never told a grade as far as I can remember.

I had chemo at another hospital where I worked, 6 rounds of carboplatin and taxol, and that's all I've had to have.  I heard somewhere that they don't do radiation for stage IV as it would be too big an area.  So far, I've been NED.  My last CA 125 was 8.  At diagnosis, it was only 94.  So many people on this site have had much higher CA 125's but they had a lower stage of cancer.  Weird, isn't it?

I had a couple of CT scans the first year and a half which were negative.  I had to have surgery for an incisional hernia this past August.  I thought that would be a much easier surgery than the first, but it was just as painful.  I was told that's because they pump you full of gas for the laparoscopy.  I was hurting more on the side opposite where the surgery was done.

I'm getting 6 month check-ups.  First, I get one from my surgeon, then I get one from my oncologist three months later.  So I'm really getting checked every 3 months by one or the other.  I still wouldn't be surprised to have a recurrence, but I haven't yet, knock on wood.  My mother had breast cancer in two different spots in the same breast ten years apart, her mother had breast cancer, and my father had prostate cancer, so I guess the tendency toward cancer definitely runs in the family.  But there is also a lot of heart disease, so I have my choice of what I'm going to die from, ha, ha.  My husband had a melanoma two years before I had my cancer, so we both see the same oncologist. 

I read on here about all the women who were taking care of family members around the time they were diagnosed.  I, too, was stressed with dealing with my mother, who was in a nursing home for 4 years, and I was stressed by my job.  My mother died two years before I was diagnosed.   I'm sure my mother's breast cancer was caused from stress, too, as she'd had a lot of issues with my little brother.  I retired from my job a month after chemo ended, so that helped my stress level.  My little brother, five years younger than I, died of a heart attack while I was still going through chemo.  He thought I was going to die, and I never thought he would die first. Such is life (or death).

I still had shortness of breath a few months after chemo (I'd been anemic), so I was tested.  My blood levels weren't low enough to be causing my shortness of breath, so my family doctor tested my ferritin levels.  He found they were very high.  It turned out I had an unusual form of hemochromatosis, a genetic defect where the body stores too much iron in its organs.  I had one gene defect not the normal two.  Hemochromatosis was just discovered in the late 90's, so a lot of research still has to be done on it.  They don't know why some people with the one gene defect get it and others don't.  Now, I have to have blood removed from me occasionally, where after surgery and during chemo, they were putting it back into me (I had several transfusions). 

I'll turn 65 later this year.  I wonder if I'd even be alive now if I hadn't complained about a small amount of bleeding three years ago.  I just hope it doesn't come back because I'm not sure I ever want to have another abdominal surgery! 

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