How about a roll call? Haven't heard from many of you in a while.

Mary27609 said:

Thanks for this-- I feel like

Thanks for this-- I feel like I need to do an emotional download and have been looking for a safe place to do it.

I'm Mary and I live in Raleigh, North Carolina. I will be 54 a week from Saturday. I'm having a bad day and I don't really know why. My surgery was a year ago today-- the day Prince George was born. Televisions all over the hospital were tuned to the news and so as long as the media keeps track of his birthdays-- I'll be reminded. I never ever thought I'd mind being reminded. The day went very well. I love my surgeon (she's now my Gyn)-- she used the DaVinci robot so only four tiny slits. I had been diagnosed after a D&C earlier in the month, so there was no bad news after the surgery.

I went home the next morning and recovery was smooth. I was back to work in three weeks. Chemo was much harder Of course I didn't know that yet. But now today I'm sort of weepy-- fighting it, but it's enough to distract me.

Which brings me to a question I've been meaning to ask. I had a radical hysterectopy-- everything including ovaries. But I still feel a sort of a cycle. I have a week every month where I'm cranky and a bit bloated and headachy. I thought this would all be GONE. And it's a year later.

I have a 22 year old daughter at home-- I know females match cycles and our bitchy weeks do match -- the week before she gets her period. Is the affect of another female that strong? Or are there residual hormones still cycling in me for this long? I thought I was mid-way through menopause already when I got sick-- now I feel more hormonal than I had in years. 

ANYWAY-- enough with the questions . I was diagosed as Stage IIIc1 Endometrial Cancer-- ovaries and cervix not involved but some evidence in pelvic lymph nodes. After surgery I had three rounds of chemo (Carboplatin/Paclitaxel), 25 doses of external radiation and then three more rounds of chemo ending on February 26.

I had a CT-scan and also an MRI in May (there was a shadow on my liver in the CT-scan). My doctor reported no evidence of disease on May 27. Coming up on two months cancer free.

My emotions have surprised me the most. The medical side effects I was warned about, knew about and wasn't ever surprised. I certainly had miserable times, but there was a goal and I knew I was supposed to feel miserable. This emotional stuff has really thrown me for a loop. I was fine during treatment-- better than I ever expected to be-- driven and focused. But since it's ended I'm just a big bag of fear and apprehension. Bleh. Anyway-- I've posted about this before and have gotten wonderful responses and great advice. I have pockets of thankfulness and joy and I have faith that it will get better. It was just very surprising.

I'm enjoying reading all of your stories-- the best thing is knowing I'm not alone.  

 

 

Mary, I think it all just takes time.  For some crazy reason when I was sick (and BTW that is the way I refer to my cancer) all I could do was worry about when my sisters would travel. I was terrified that something would happen to them and made them call me and tell me they were ok.  I have gotten better about it but every now and then I just worry about them.  

It has been two years for me and even though it wasn't anyone's birthday, I email my sisters and friends, "Today in history" and remind them of surgery, chemo, whatever.  Dates in 2012 are very ingrained in my memory and I think it always will be. I do think the first year is the hardest as it is always, "this time last year...."

Please don't be hard on yourself.  Take a breath, try to roll with it, and ask for help it you need it.  Remember what you just went through and did to your body!  It is pretty wild and you MADE IT!  

Take care 

Hi ladies,Ihaven't posted for awhile,didn't want to scare the newbies! I was diagnosed in April 2013 at age 58 UPSC stage 3C I'm a nurse and never thought I was wonderwoman but did think I had a few super powers!well then the kryptonite started.Surgery was first and I did great,then taxol and carbo,was the less than .25% that couldn't tahe taxol and was changed to taxotere.Sandwich treatent consisted 3 rounds of taxotere followe by 28 external radiation,3 internal radiation and 3 more taxotere.3 weeks later the CT showed new pelvic nodes and new peritoneal areas!Started on doxil and did really good for the 1st 2 treatments,on the 3rd treatment my feel and palms blistered,the size of baseballs On Memorial day I was admitted to the local hospital with neutrapenic fever and was hooked but with the local oncologist office which was a blessing. I know I need UNC and there specialist but our local practice has been a blessing.They are so concerned with the way I feel following treatment.During the hospitaliation one of the blisters lost lost the protective skin covering the wound nurse felt my feet shoud be covered so I didn't pick up a nasty bug in my weakened state and I agreed.Unfortunately I have  new blisters breakout and could 't have another treatment with doxil for 2 months.My fear was that this amount of time would give the beast time to mutate because it was looking like I was getting some good resutls from the doxil in spite of the side effects.UNC said they had never seen such a severe reaction.2 weeks later started vomiting and diarrhea that was like a 3 week colonoscopy prep,had to go in for hydration and they were able to break the cycle with iv antiemetics,po zofran,phenergand  and compazine did  nothing to help and I was going to be placed back in the hospital but was able to convince oncologist hosptals were no place for sick people.I was given 1 day to turn it arouond ane praise the Lord it worked!I finally received my 4th doxol at a lower dose and on massage doses of steroids prior to during and after the treatment.These steroids are about to work me to death,ha ha.3 weeks after the 4th dose I had a CT scan to see if I would receive and 5th and 6th doses and low and behold despite of going two months without a treatment,I received a call before I even got back home and the result were NED! I received a treatment on Friday and will get another in Aug.The plan is not to let me go 3 months without and eval but to repeat another CT 3 weeks after the 6the treatment and if I'm NED again I will be free as a bird for 3 months.So much joy with my friends and family right now so don't give up hope ladies! I'm not 100% sure yet what God is wanting me to learn but I wonder if I was to content and needed to be reminded of what a blessed person I was because I am much more aware of my many blessings.Husband,daughters and son's in laws,grandchildren,siblings and wonderful and faithful friends.Praying this dance with NED last and last! I was the only person in chemo Friday and a treatment and a pedi at the same time,now that is what a awesome family does! 

NoTimeForCancer said:

Mary, I think it all just

Mary, I think it all just takes time.  For some crazy reason when I was sick (and BTW that is the way I refer to my cancer) all I could do was worry about when my sisters would travel. I was terrified that something would happen to them and made them call me and tell me they were ok.  I have gotten better about it but every now and then I just worry about them.  

It has been two years for me and even though it wasn't anyone's birthday, I email my sisters and friends, "Today in history" and remind them of surgery, chemo, whatever.  Dates in 2012 are very ingrained in my memory and I think it always will be. I do think the first year is the hardest as it is always, "this time last year...."

Please don't be hard on yourself.  Take a breath, try to roll with it, and ask for help it you need it.  Remember what you just went through and did to your body!  It is pretty wild and you MADE IT!  

Take care 

"When I got sick" is the only thing that makes sense to me. I figure the cancer was around for awhile (who knows how long!) before I got sick. I worry more about family too-- to the point where my daughter said that she and her father don't tell me about it when little things go wrong-- which has only made me crazier. I do have a feeling I'm going to be reacting to sickness/treatment/NED anniversaries for awhile at least. OH WELL! As long as I'm still here to drive everyone crazy-- that's all that matters And I feel so much better today.

My name is Barbara. I live in Fairfield CA about 1/2 way between Sacramento and San Francisco.

 I was diagnosed with a biopsy by gyn after I told her about slight bleeding.(She called me with the results Jan '14). It was my only symptom and I went to her right away. Pathology following hysterectomy staged me with Endometrioid adenocarcinoma 3C grade 2. Also my vagina tore during hysterectomy.  I have had 6 chemo treatments, 3 weeks apart. I have also had the radiation simulation CTscan. Will probably start external radiation next week. Internal is planned after that. 

Chemo wasn't as bad as I had imagined. Do have neuopaty in my feet tho. Hoping radiation treatment is equally tolerable.

My chemo onc told me my 5 year survival chances are 40%. I didn't ask and didn't want to know. But now that I do - I can get pretty weepy and upset very easily.  I'm not ready to be done here. My husband & I are helpiing raise our two grandchildren (their mother is ill) ages 5 & 7. My work & fun isn't done so I'm going to do everything I can to fight back.

dkdrew said:

throw those "odds" out the window!

Hi Barbara, sorry to be meeting under these circumstances but I just have to say take those odds and throw them out the window! You can get hit by a bus sitting on your sofa this evening- What are the odds? but it could happen. Don't let those numbers scare you! Your attitude, your determination, your health, your love of life.... those are your "odds". stick to them. Doctors don't know everything... that's why they're practicing medicine!

 

Thanks Kathy,  I'm trying. I liked your attitude - printing out your response so I can keep it in sight when I need it.

Barb

cheerful said:

 I am currently 63 years of age and when I was diagnosed I was 59 1/2. I live in a suburb of Delaware County, PA.  I had my surgery and chemo treatments at Crozer Chester Medical Center in Upland, PA. I am currently with NO evidence of disease.

  I was diagnosed in February of 2011 with UPSC and my cancer was 5 centimeters. Presumably, Stage 1.  I had heavy bleeding for about 6 months so I had surgery. I did not have my omentum removed or lymph nodes sampled as my gyn did my surgery.  After I was diagnosed with cancer in the hospital, my gyn introduced me to a gyn/oncologist and then I found out about 3 weeks later that it was UPSC.  My gyn/oncologist recommended very aggressive cancer treatment of chemo even though it was an early stage although I understand that anyone diagnosed with UPSC since it is such a rare and aggressive cancer, that chemo is recommended for all stages of this cancer.

  I went through 6 rounds of chemo of carboplatin and taxol starting in April of 2011 and finished with chemo in August of 2011. I then went through 3 rounds of vaginal brachytherapy and finished in October of 2011.  I am very grateful that my cancer was caught early.

 I have had several cat scans (3) alone in 2011 and they all came back with No evidence of disease for which I am very grateful and thankful. I also have had scans done every year since and so far I am still with No evidence of disease.  My latest cat scan was in March and that came back with No evidence of disease.  I saw my oncologist in April and my pap smear came out fine.  I had my CA 125 done the end of May and that was No. 7.  I am very grateful that I am still with no evidence of disease and it is well over 3 years.   I go back and see my oncologist in mid October for a 6 month checkup.   I see my gyn/oncologist 2x a year.

  I have changed my eating habits for the better and am eating a lot healthier.  Getting diagnosed with UPSC is very scary and it is such a rare and aggressive cancer.  I am enjoying life each day and keep in very close contact with family and friends.  I truly had great and wonderful support from family and friends when I was going through my cancer journey. 

Cheerful

a/k/a Jane

  

  

My name is Roberta.  When I joined this forum I was the 10th person to sign in thus the user name Ro10.  Now how many more members there are.  It is so sad that there are so many of us.  I was diagnosed in Jan 09 with UPSC Stage 3-C.  I had no symptoms.  I went for a routine PAP test and it showed abnormal cells.  I had a colposcopy which was highly suggestive of adenocarcinoma.  MY gyn referred me to a gyn/ono.  Both of these doctors felt all I would need was a hysterectomy, so I was shocked when I came out of surgery and found out I had an aggressive and rare type of cancer.  In the hospital the doctor told me the cancer was treatable but not curable, so I have never been looking for a cure but thinking of it as a chronic disease.  I had robotic surgery so I was only in the hospital for one day.  The doctor told me I could start chemo soon. 

Initially I had the sandwich treatment with Taxol/Carboplatin and 28 external radiation treatments with a 28 hour internal radiation treatment.  I had a reaction to Taxol right away, so I have to have it very slowly.  I had an 18 month break from chemo and had 3 more treatments of Taxol/Carbo.  I had a severe reaction to Carbo so I was switched to Cisplatin and had 4 treatments of Taxol/ Cisplatin.  As soon as I go off chemo my CA 125 begins to rise.  It got as high as 1700 when I had ny second round of chemo.

I had only 7 months before my CA 125 went to 3200 and I needed chemo again.  I had 6 more Taxol/Cisplatin treatments.  I never had any symptoms with my recurrences.  The CAT scans indicate when its time to start chemo again.  Due to my reactions to the chemo drugs it takes me 8 hours to get each chemo drug, so I spend two days getting each treatment.  But at least I can still get the taxol and platinum drugs.

I developed bilateral pulmonary emboli (clots in lungs) which was caught incidently on a routine CAT scan.  I have been on daily Blood thinner shots since 1/2012.  Again I had no symptoms.  Even though I have had chemo 3 different times, I have minimal neuropathy or any other side effects from the chemo.

I am currently taking Aromasin which is an Aromatase inhibitor.  It seems to be helping to slow the cancer growth.  It does have joint pain and hair thinning as side effects for me.  I wear a hat when I go out as I have male balding tendency......a nice bald spot on the top and back of my head. 

I try to eat healthy and exercise with walking and gardening.  I try to be around positive people.  I find joy in each day and thank God for every day (and many years) I have had.   I do take biocurcumin.  My husband read that the blood thinner shots slow cancer growth, but I would not recommend that to anyone. 

Currently my CA 125 is 1582, and my latest CAT scan shows one lymph node that has increased in size in the last year.  Waiting to see if I am candidate to have node removed or reduced in size with cyber knife radiation.  I hope that my journey will give hope to others.  Take it all a day at a time.

Double Whammy said:

Hi Neighbor!

Barbara, I'm right up the road from you - in Woodland. 

Dx'd in 2010 with Stage 1a, Grade 1 endometioid adenocarcinoma and breast cancer.  NFT for endo cancer except followup and I  see my gyn/onc Monday for my regular, now routine check.  In fact, I was planning on trying to talk him out of any more appointments.  Changed my mind as a good friend was just diagnosed with mets from kidney cancer diagnosed in 2009.   Keep up the follow-ups, it gets better with time, but there are no guarantees for any of us.

I hope you will gain more confidence as time passes.  I was quoted survival rates (for breast cancer) with and without chemothereapy and then radiation.  With treatment (and time) the survival rates get better.  Now, that was for breast cancer, but all survival rates do improve with treatment - or they wouldn't do treatments.  Since it's not possible to UNhear what you've been told, it might be worthwhile to have a conversation with your oncologist asking her to explain her statistics.  It may well be that that 40% number is a different number AFTER you have completed treatments.  And that may bring you some peace of mind.  There are definitely many women on this board you are thriving after 5 years.

Now, I have to ask:  how the heck did your vagina tear during hysterectomy?  Ouch.

Welcome.

Suzanne

Hi Suzanne,   Thanks for the welcome and reply.   I don't know how the tear happened. Didn't even think to ask - they catch you when you are all doped up and then later throwing so much info at you it is hard to think.   Of course, I was asleep when it happened.  I had a laparoscopic total hysterectomy. They did keep me over night and all of next day and I had some kind of packing inside.  I only mentioned it because it makes me think  - just another way for cancer cells to spread instead of stay contained. I had my surgery at Kaiser Sacramento.   My first  radiation treatment is Monday.

Barb

I am a 65 year old from Schuylerville, NY.  I was diagnosed at 61 in March of 2010, had surgery in May of 2010 at St. Peter's Hospital in Albany, NY, and 6 rounds of chemo (carboplatin and taxol) at Glens Falls Hospital, where I worked, starting in June, 2010.  My stage at diagnosis was IVb.  I had UPSC in the uterus, both ovaries, the omentum, and the small intestine.  No lymph nodes were involved.  I also had my gallbladder and appendix out in the same surgery.  I was in the hospital for 6 days.  I had two units of blood when I was in the hospital because I had lost so much blood and one while I was undergoing chemo for chemo-induced anemia.  I am still slightly anemic.  My CA 125 at the worst was 94.  I've had 3 CT scans since surgery.  I had one in May of this year because I had abd. pain.  Nothing was found on the side where I had the pain, but a small mass was found in the peritoneum on the other side. I had a PET/CT a week later which showed the same thing.  My CA 125 in June was lower than it ever has been since surgery, in the 6's, so the docs aren't sure what the mass is.  I have to go back in Sept. to have another CT to see if it's grown.  If it has, I'll have surgery again at that point.  The abd. pain totally went away while I was on vacation this month, but I've had it occasionally since I've been back.  I wonder if it's diet-related or from something else in my environment.  I haven't had any complementary treatments.

I figure that if I expect the worst, things will either turn out as I expect or be better.  I have several friends praying for me, which also seems to help.

My mother had breast cancer twice in two different spots in the same breast, her mother had it once in both breasts, and my father had prostate cancer, so the tendency to get cancer certainly seems to run in my family.   It didn't kill any of the relatives (they have all since died of different causes many years after having cancer). 

I was diagnosed with hemochromatosis three months after completing chemo and then had to have three phlebotomies to remove the blood with excess iron I had in my system.  I thought that was ironic (no pun intended) after having had it put back in there with transfusions just months before.  And then, when I had my phlebotomies, too much was taken out too fast (I couldn't handle it because of having had chemo so recently), so I was anemic again.  I was admitted to the hospital overnight at that point.  I have been  slightly anemic ever since, but at least I haven't needed any more phlebotomies.  

I feel reasonably healthy for my age now, so I'm hoping the mass in my peritoneum is just a fluke.  One of the employees in my gyn/onc's office speculated that it could be fluid from having my lymph nodes removed.  She said that sometimes it accumulates years after surgery.  I'll know in September, hopefully.       

Good Morning:

I am newly diagnosed with UPSC (July 2014) and will have surgery in mid-August. I have been reading many of your supportive and informative posts and am so glad to know how many of us are out there. While trying to stay focused, organized and positive, this has been very hard....feeling close to the brink of freaking out, but this is not my normal m/o. I've always been the strong, caretaker in my family, so this diagnosis and what is inevitably ahead has turned everything upside down for me. The waiting has been hard and since I feel fine now, it's hard to imagine the changes that are ahead and all of the unknowns. I stilll have one week left at work and so much to do. It's not really helping to be told .... just take care of yourself now...Nothing I can do but wait and try to stay off the internet cancer web-sites which are anxiety producing, but informative and, for me, a bit of an internet-junkie, addictive. In terms of basic info. about me: 61 y.o.; in NYC (Brooklyn); so far, friends and family (no children) have been a source of strength, comfort and diversion; will be interested in learning more about complementary medicine/healthy life style after surgery/staging info and course of traditional treatment is known.

So appreciative to be joining this knowledgeable and supportive group.

Ro10 said:

Ellen welcome to the site

Sorry you have to join us.  I find it interesting that you have been diagnosed with UPSC before your surgery.  Most of us did not find out we had UPSC until we had the surgery.  It is very scary to hear any cancer diagnosis.  We can all relate to that fear and especially the fear of the unknown.  

I hope your surgery goes well, and you have a low stage.  Do you know if you will have robotic or open hysterectomy?   I would caution you about searching the internet as much of the information is outdated and very scary.  I was diagnosed with UPSC stage 3-C in 1/09, and I am still here.  I have had three rounds of chemo, and I would say I am still thriving, so don't let the statistics you read scare you.  I think of this cancer as a chronic disease.  As many have said " you are a statistic of one".

I would recommend reading posts from this site as this is current treatments and success of those treatments.  Unfortunately we have lost some sisters but their stories tell of their fight and courage to combat this cancer.

i send you well wishes as you begin your journey and come back with any questions you may have.  In peace and caring.

I had a biopsy following PAP smear and after lots of initially optimistic (99% sure it's just a fibroid....) speclations, was told in early July that it is UPSC. Then went to gyn/onc/surgeon who confirmed dx. She indicated that robotic surgery is likely, but won't know definitively until pre-testing is conculded this week and then indicated though  unlikely small chance that even if robotic is planned, sometimes switch to regular surgery is necessary. Surgeon seems to be very experienced in robotics so hoping this is route for me. Thanks for your response, Ro10. Really needing encouragement....dreading the weeks ahead.