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Can we do a ROLL CALL with everyone posting their name, cancer diagnosis, & where they are in treatment?

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

We have so many wonderful new people posting and I have been so busy with treatments and trying to keep my head above water at work. I am afraid I haven't really welcomed everyone (I APOLOGIZE; you can't possibly KNOW how glad I am that you all have found us!), and I am having trouble keeping everyone straight in my poor chemo-brained head.

So could you each just post under this thread with the name you'd like us to call you, what your cancer diagnosis is (if you have it yet), and where you are in your treatment. And if you want to say where you live, that would be cool too. I'll start it off:

Linda Procopio:
Stage III-c UPSC, radical hysterectomy 10/10/09; just finished 6 rounds of carboplatin/paciltaxol (sp?); with 8 weeks of radiation coming up after I recover from the chemo. I live in central Pennsylvania.

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

Welcome ladies,

There is so much support and information here - I hope you both will find this site useful. Shavilyn - you talked of concern about your stage/grade. I would encourage you to talk to your doctor/s about statistics. My doc is an optimist and I'm trying to keep that positive outlook. Instead of dwelling on the 60% recurrence rate, he tells me "there's a 40% chance you won't recur!" - I have stage 3a grade 3 (UPSC) - this whole cancer thing is so scary. We are all so different. Try not to get discouraged.

Diane, yes, you are young compared to most of us (I'm 62 - was diagnosed at 61). I'm glad you are responding to your chemo regime. Taking one day at a time is the best way to go.

I wish both of you as well as all of us - continuing blessings, Mary Ann

griffy2@verizon.net
Posts: 4
Joined: Oct 2009

Hi Daisy,
HI to all of you! I am speaking in behalf of my wife who was diagnosed with stage 1 Uterine cancer 9 Sept. 09 and was operated on 21 sept. 09. Began her chemo on the 6th of Oct. 09. She had 6 treatments 3 weeks apart. Each and every time she would go for the treatment the nurses asked if there was any side affects other than the normal nausea. She, being Anne, told them each and every time, "no there have been no side affects that she was aware of." What we should have asked was "What are some of the symptoms?" Anne's last chemo was on the 19th of Jan 2010. Last week Anne started mentioning that her forearms were beginning to feel very sensitive to the touch and as time went on could not wear anything on her arms. She called the NP and mentioned it to her and that NP ordered an ultra sound to rule out blood clots. Also ordered Anne to take Ibuprofen and rap a wet cloth with a heating pad to help take away the pain. None of those worked. The NP never mentioned the possibility of the onset of Neuropathy. Just the other night we were watching Larry King Live and a young movie star had just dropped dead and her husband and her mother were being interviewed. The mother had mentioned that she was suffering from Chemotherapy induced Neuropathy. A lightning bolt struck the both of us. I did some googling on that and came up with some very interesting information. Come to find out it is very common among chemotherapy patients.
Anyone reading this if you have experienced this; What medications are there that will alleviate this issue?
a couple of sites that I have viewed:
http://www.chemocare.com/MANAGING/numbness__tingling.asp
http://chemotherapyneuropathy.com/cause-chemo-neuroapthy.htm
I have searched this AMC site and have not really found too much information other than people have Neuropathy.
Anne is doing well after those chemotherapies and is in good mind and spirit and is looking forward to walking out of this hurricane as it looses it strength.
I salute all of you ladies who have to battle this type of cancer. I also salute all the caregivers who have supported you all.
We have found that the doctor and nurses are great, however they are too vague in mentioning what are the side affects and things to do when an issue such as Neuropathy does come front and center.
Regards,
Dave&Anne Griffith

Northwoodsgirl
Posts: 201
Joined: Oct 2009

Dave and Anne, I am sorry to hear that you weren't aware of chemo induced neuropathy. That should have been discussed with you by your oncology nurse and oncologist. You should have been given written materials (National Cancer Institute) about what to expect with chemo.
Can't look backwards now. Looking forward Anne should be referred to a neurologist who specializes in neuropathy. I just finished chemo Dec.30, 2009 and have numb feet. I can't get in to see the neurologist until the end of March. They are very busy doctors due to all of the people with diabetes that have neuropathy also. The earlier neuropathy is treated the better off you will be. There are some drugs which can help with the symptoms. I think that the chemo has killed the protective lining on the nerves. If it is just numb and not burning then it is less severe but only a neurologist specializing in neuropathy will be best to say. Another interesting thing to know is that there is a strong tie between uterine cancer and colon cancer so Anne may want to proactively seek out a Colon-Rectal Surgeon to find out what type of early screening testing can be done to ensure colon cancer isn't the next battle. I know it is disappointing to learn that you weren't made aware of the symptoms of neuropathy from chemo. This is a good site to find answers from others who have battled uterine cancer and all the treatment and side effects.
All my best! Lori

griffy2@verizon.net
Posts: 4
Joined: Oct 2009

Hi Lori,
Thanks for your support. Anne is scheduled for a CScan this Friday. chest and abdomen, to establish a baseline. I never knew it but I have neuropathy from a back surgery I had done several years ago. The surgeon had clipped a nerve in my back and my leg is numb from the knee down. Same symptoms tingling and sharp needles in the foot. What this does is make me search more for answers.
Anne has been having Colon-Rectal every 5 years. And she is planning on having one shortly.
I thank you for your information.
Dave

jmnye
Posts: 14
Joined: Feb 2010

Hi - I was diagnosed with Stage IIIc in March 2009. I had surgery in April 2009. I finished treatment (chemo and radiation) in Sep 2009. My GYNonc recommended L-Glutamine, an amino acid that you can get at any health food store, to prevent neuopathy. It was a miracle. It's somewhat expensive--$50 a jar, but really makes a difference. You take 2 teaspoons dissolved in water 3x a day. I started 1 day before chemo, and then continued for a week after chemo. You can take it for months or anytime. It is 100% safe with no side-effects.

I go for my 1 yr scan next month.

R's,
Jane

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

Are you saying you had no neuropathy?? That is so great!! Did you have taxol? I think that's the one that causes the neuropathy. I wish my doc recommended L-glutamine. He just told me about B12- which I think did nothing.

Hopefully I will not have to use it, but I will remember this info if I have to have chemo again. Best wishes to you. I hope you are NED!!!

Mary Ann

RoseyR
Posts: 462
Joined: Feb 2011

Dear Mary Ann and Dave,

New to this wonderful site, I posted earlier today a lot of information on preventing and treating chemo-induced neuropathy. Glutamine is--you are right--a superb supplement, one of several that can help.

Apologies to all that today's message on neuropathy somehow got posted four times in a row; i must learn how not to let that happen!

Warmly,
Rosey R

Zupo's picture
Zupo
Posts: 7
Joined: Jan 2010

Hi Linda, My name is Mary and I live in Western New York, in between Buffalo NY and Niagara Falls NY. I was diagnosed with endometrial cancer March 13 2009. April 13 2009 I had a Radical Hysterectomy. May 20 2009 I started 3 brachy radiation treatments, one a week. I was Staged 1b g2.

smsw
Posts: 5
Joined: Feb 2010

My name is Sandra. I joined this discussion group just recently when I learned that I MAY have uterine cancer. My surgery is tomorrow so, if anyone reads this, please keep good thoughts that it is not cancer.

I am a 15 year survivor of breast cancer. I had two surgeries, positive lymph nodes, chemotherapy and radiation. I am now 71 and not at all anxious to repeat the treatments.

I know I have many "sisters" out there who have gone through much worse than I have. I hail every single one of you even though we belong to a club we would rather not have joined.

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

I hope all goes well with your surgery. Sorry you have had to join our site. Congratulations on being a 15 year breast cancer survivor. There are many others here who also survived breast cancer and have ended up with uterine cancer. I hope your pathology report comes back with good news for you. You will be added to my prayer list. In peace and caring. Keep the positive attitude, and take one day at a time.

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Sandra.....I am so glad that you found this site. The women on this site are incredible! I am praying that your path reports are negative. However, none of seek out membership in this "club" but I can say, I can't think of a better group of women to be associated with...compassionate, knowledgeable, encouraging, and a wealth of information that is readily shared.

Please let us know how you do!!!

Karen

starlight22960
Posts: 2
Joined: Feb 2010

I am new to this. I just found this website. 5:30 am here in va. Tried to log on to chat rooms. Can't view them. I just get a blank page that tells me to click a button if not directed in 10 secs. I cant even view a button. Dont know why.
Just another thing to make my day.
Can't sleep, I go the the gyn oncology today.Not looking forward to it. Don't know what stage of whats going on. Have to have a hysterectomy, dont know when.
Pretty much freaking out at this point. Cant seem to get any answers.
jami

Reddie's picture
Reddie
Posts: 72
Joined: May 2009

Hello everyone!! I'm back! I just got message from CSN inviting me about getting together in Philadelphia which is why I'm back. I've been gone for a while to a busy world.

It's good to see your faces again ---old ones and new ones.

Brenda Boaz as Reddie:
Stage III-c Uterus cancer, total hysterectomy 5/24/09; had 1 round of chemo; within 1 week of chemo I had colon infection and started antibiotics then few weeks later had abscess drainage within 1 month of IV antibiotics. After that I had CT scan and no sign of cancer cells. I had doctor's follow up with pap smear and blood works for CA 125 on January, 2010. They said, my CA-125 is 15 which is good news. Now I'm waiting for the second follow up to see if it's the same results.

Have a nice spring! Reddie

mitchelford111
Posts: 1
Joined: Apr 2010

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aprillorey's picture
aprillorey
Posts: 104
Joined: Apr 2010

my name is April i'm 29 and live in Iowa.

on March 22nd 2010 i was told i had the 1st stages of Uterine cancer

April 16th 2010 i had a full Hysterectomy in may of 2010 my tumor was very very big

so in may of 2010 i will undergo 5 rounds of Radiation treatment so thats my next step. im married and our dream of having a birth child is now over we do have baby angels who all died due to misscarriage sadly.

Reddie's picture
Reddie
Posts: 72
Joined: May 2009

You're not the only one who did't have children. I myself never had children. Andy and I met each other before I had Uterus cancer and now it's over but we never give up cuz we are planning to adopt children. I am very blessed that Andy stayed with me through recovery and looks forward to a new beginning.

Have you thought about having adoptions?

cheers,
Reddie

aprillorey's picture
aprillorey
Posts: 104
Joined: Apr 2010

Yes we have we looked in to it as we always wanted birth but we also wanted to adopt, how ever due to being on SSI ( goverment funds ) and my husband working a very low incom job my being over weight and the cancer and other things like being far in debt they told us that the chanchs of us adopting is slim to none we been praying for the adoption laws to change . money is tight we could raise a child but cant aford the fees and other stuff and alot of the laws are crazy

we did try to foster care a few years back but it didnt go so well the home study worker clamed because we had not been married but a few years and due to husbands loaw income job that they turn us down.

well i pray for you and andy to be blessed

im blessed with my husband we married in 2004 but got together at the end of 2002 hes a wonderful man whos been by my side every step of the way

thanks for the message hun

sue K
Posts: 18
Joined: Apr 2010

Hi my name is Sue and I live in Scotland.
I was diagnosed with stage 1c grade 3 uterine carsinoma (or MMMT as it is sometimes called). I had radical hysterectomy followed by carbo/taxel chemotherapy, followed by radiotherapy. I finished my treatments last October, and I am now a NED!!
Unfortunately it's hard to be as happy as I should be at the news that I am clear of cancer, because of the after effects of the treatments - extreme fatigue, and severe joint and muscle pain. I used to be such an active person, doing lots of diy around the house and garden, and long distance hiking with my daughter, but now I find that any sort of exercise makes my pain worse.However I am not giving in to it, and I am walking every day, and doing what I can around the house.
I was so pleased to discover this forum because I felt that I was alone in suffering these after effects, and my oncologist cannot explain it. Now I realise that there are lots of you out there with the same symptoms, and far worse. It is so very good to 'meet' you all.
I am 65 years old so have nothing to complain about compared with so many of you young ones - my heart goes out to you all.
Hugs to you all
Sue

j1o2y3
Posts: 5
Joined: Apr 2010

My name is Laura i live in NY and Im 47 years old. I have reading this message board for a while and got a lot of great information from you all that I decided to post today and be a part of this message board. I was diagnosed with uterine cancer stage 3 grade 3c Feb 2010. I currently just finished my third treatment of taxol/carbo with 3 more to go.It seems with each treatment its a little harder to bounce back to feeling normal.Not much of a appitite the first week then I cant stop eating the next two weeks. If this chemo treatment works it will be well worth all the side effects.
thanks for listening!
Laura

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

You're getting into the harder half of your chemo rounds, so big hugs. ((((Laura)))) Don't be surprised if you need a blood transfusion, or an extra week between treatments, or a Nuelasta shot now as you get into the final stretch of your chemo protocol. It happens to most of us and so don't let it throw you. You're halfway through and the end is in sight now.

You may want to start a new post with any real questions for the Board. Although this LOOOOONNNNGGGG thread is the most important thread on this board because it is the most comprehensive, it is so huge that it loads very slowly and so you won't have many replies as people give up waiting for it to load. But sometime when you are sleepless, it's a wonderful 'read' that you can think of as a book written just for you and what you are going through. I think this Discussion Board is the best resource on the web for 'real time' current information on uterine cancer.

Michaelynn
Posts: 67
Joined: Apr 2010

My name is Michaelynn and I am 59 years old and live in Indiana. Was diagnosed with UPSC in february of 2010. I am stage 1A grade 3C. I was spotting since 2008 and they kept doing ultrasounds saying it was a fibroid. I have had 3 vaginal cuff radiation treatments and am going for my 3rd chemo treatment on July 14th. Anyone else stage 1A grade 3?

kansasgal's picture
kansasgal
Posts: 115
Joined: Aug 2009

I just turned 65 and live in Kansas. I was Dx in April 2009 (following TAH) with 1B grade 2 endometrial cancer and in May 2009 (quality review of slides) with 1A grade 3 UPSC. I had 6 rounds of carbo/taxol 6/09-10/09 and 3 rounds of vaginal brachytherapy 8/09-9/09. I am currently NED and hope to remain that way! Please let me know if you have any questions. My next check-up is late August, and I use my vaginal dilator almost every day.

Sally

bea-mil's picture
bea-mil
Posts: 106
Joined: Jun 2010

In 2001 after regular pop smear test, but LEEP and D&C have not confirmed that then. I had to wait 9 years and run more tests (pop smears, Ultrasounds, colposcopies, biopsies, MRI's etc. for my cancer to be confirmed in March 2010. The bleading between the periods that I had all the time was taken as a symptom of my uterine fibroids. Other symptoms -changes in bowel pattern - were misdiagnosed with irritable bowel syndrom.
My cancer was staged as 1B and upstage by another pathologist (oncology clinic) to 3A grade 1/2. The cancer had spread to the outer lining of the uterus, but not to other organs.

I had total hysterectomy March 23rd, 2010(including the uterus, fallopian tubes, ovaries and cervix). No lymph nodes were taken. My surgery was performed by my gynecologist (not oncologist). My radiation therapy sessions were scheduled for July 12th 2010. I had my simulation planning session, got my little tattoos, and have decided to stop the conventional treatments at this point.
My treatment now: healthy diet, exercise, meditation, change of way of thinking, plus alternative approach (reiki, Gerson's, Budwig's therapies and more).

I believe that everything has its purpose and even the worst thing (like cancer) can lead to something good. In my case to my surprise this terrible illness gave me calm and peace and understanding towards others than I’ve ever had. I feel that I’m totally new person. I will do everything (natural way) to get better and live long my new life; I believe that God gave us everything on this earth to stay healthy and happy. We just have to learn how to benefit from that.

RoseyR
Posts: 462
Joined: Feb 2011

Dear Bea-Mil,

Curiously, despite a recent diagnosis of an aggressive uterine cancer that usually has poor prognosis (MMMT, stage IB, with no signs yet of metastasis), and only 50/50 chance of surviving five years, even after chemo and radiation, I have felt a newfound calm that I've never known before.

Of course I had a few bad days when I started reading articles online about the aggressive nature of this cancer (possibly a bit worse than even serous forms).

My worst moments concerned breaking the poor prognosis to my mother, who is 91 and in good health; I am her only daughter and although she has two sons, I am her major emotional support; we talk every day by phone and I spend every other weekend with her.

Hating to frighten or depress family and close friends, I haven't shared the prognosis with anyone! All they know is that I needed a hysterectomy to remove a cancerous tumor and that to help prevent recurrence, I need follow-up chemo and radiation. They probably assume recurrence in five to ten years--not the one to two that often typify this cancer!

Other than trepdiation about sharing the prognosis with family (at her age, my mother COULD die before I do, so why depress her with a grim prognosis? I'd rather not share it until and unless I have a serious recurrence (to lungs or liver), in which case of course I would tell her I might not have much time left. Nor do I want to see my two kid brothers look at me every moment with fear and pity; did anyone else struggle with this issue? I COULD share prognosis with a few close friends from work (a small group I often socialize with, who are great) but fear I'd be defined primarily by my disease--and be seen as a "walking death bomb," inciting sadness and depression even among close friends who might, being human, prefer to avoid my company too often because, being human, a poor prognosis would cut too close to home: reminding them of their own mortality. Well do I understand such reactions; I could even forgive them. As long as they know merely that I have uterine cancer and am in extensive treatment to avoid recurrence, I feel that's enough, and knowing this, they have been very supportive. I'd like to hear from anyone else who has struggled with this issue: how MUCH to tell family and friends.

Other than THIS issue, I am at peace most of the time: feeling that if I live even another 3-5 years, that's OK; I don't think I am afraid of dying. Like most, I'm hardly heroic in wanting to avoid too much suffering along the way; quality of life often seems more important to me than mere longevity.

So other than a few bad days--the worst incited by conflicts about how much to tell others--I've felt little panic or depression despite my diagnosis. I feel, curiously, little depression OR panic and now enjoy, with good medical leave, a slowing of my usual rushed pace of life. Of course I will fight to live as long as I can--through major changes in diet and my own online research. But feel curiously calm and centered and able to enjoy many simple pleasures most of the time, even without yoga or meditation. (A dramatic change of diet since diagnosis--NO sugar, NO white flour products, lots of whole grains, beans, green vegetables, only organic chicken and turkey, among other changes, boost of essential fatty acids (Omega 3 via fish oil and flax) may, I suspect, be contributing to my sense of calm; lots of green tea, known to attack cancer cells, also calms the nervous system. And in making such changes, I find NO food cravings for sugar or fried food--just a sense of satisfaction and calm, for finally I am well nourished. In the process, since early September, though it was not my MAIN goal, I have also lost 30 pounds (at age 63, I have gone from 163 to 133, lowering my blood pressure and looking MUCH better in my now loose clothing.)

One of my greatest satisfactions has een reading books on cancer and nutrition that are optimistic, giving me some sense of elements I can control despite the harrowing nature of the disease. If you can read only one, I'd recommend Anti-Cancer, by a pyschiatrist and Ph.D in science who twice surmounted brain cancer partly through nutritional changes based on fifteen years of research. The next best one I've read is Natural Strategies for Cancer Patients by Dr. Russell Blaylock.

So am glad to hear you have found a curious sense of peace since diagnosis and wanted to share a few reasons I can relate to it. In short, I feel OK about the chance that I may live just a few more years and have already started to put some, not all, "affairs in order." Yet I am not giving up, either, the attempt to be one of the few who survives five to ten years with this diagnosis. I am otherwise very healthy (few colds, no allergies, no other syndromes) and feel GREAT, both physically and mentally after three rounds of carbo/taxol; have had virtually no side effects except oaccasional fatigue, along the way.

Merely need to reconcile how much--and how soon-- to tell family about the usual prognosis for this uterine cancer.
As long as they can look at me with hope and optimism, the longer I see myself reflected in their eyes as "the usual Rosey," just one who needs a lot of treatment to avoid recurrence.

Warmly to all of you,
RoseyR

california_artist
Posts: 850
Joined: Jan 2009

Rosey, I read you intro to the board today and was very touched by your spirit of acceptance for what is, combined with your willingness to do whatever you can to live your best and longest life.

I was also very conflicted about who to tell what to, especially since when I left the hospital I was told I had adenocarcinoma, the usual type and I was Stage 1A. Both of which were a lie. My lab reports on the pap serous were done on the second day of my stay, but for some reason my doctor didn't tell me, let me go home thinking everything was alright, I told all my family the good news, and didn't find out the truth about pap serous til I went in for him to check things at the first visit. Then I was doubly devastated because I was in no way prepared for bad news, much less terrible news. I digress. once I found out about the poor prognosis, he said I would most likely only live 18 months without chemo/rad, I didn't know what to do. I did tell my sister right away because she had been in daily contact with me. My daughter had brought me so she was there when I broke down. But I did struggle with telling my mom and my son, who is very close to me.

In the end, because my mom and sister live together along with my sister's family, even though my mom was 87 I told her. I asked everyone not to tell my son as he was so happy I had a cancer at a stage that had good survival rates and I really wasn't worried so far as he knew.

So, I do understand your predicament.

By the time I did tell him, I had found my way to my own approach to fighting cancer and was pretty friggin' optomistic considering the circumstances and I think that came across in my telling. He didn't feel I was worried so he worried accordingly.

Best wishes,

Claudia

Christine W
Posts: 3
Joined: Jul 2010

I see I am responding a year later than the initial roll call. I am posting my profile information and hope to be a long-time participant.
About Christine W (California, LA area)

Gender
female
Age 55

How and when did you learn about your cancer?
After serous fluid leaking for two months I had D&C surgical procedure/biopsy and received cancer diagnosis Jan 2010. February hysterectomy/lymphadenectomy revealed papillary serous and clear cell adenocarcinoma with metastasis to one lymph node. UPSC.

What types of treatment(s) have occurred?
Surgical removal of cancer, total hysterectomy. Currently in chemo with carboplatin and Taxol (treatment 6 and last next week). Will be starting pelvic radiation and vaginal cuff brachytherapy within the next two months.

Comments:
I have tolerated chemo well and take off 4 days for treatment and rest and then back to work and my excercise program. The Neulasta keeps my WBC count up after every treatment. I am iron deficient and my hemglobin has been low since my surgery last February. So I am taking Slow Fe and eat prunes or fruit to avoid constipation.

I will be seeing a Radiation Oncologist for a second opinion in 2 weeks since my first consultation recommended 3D pelvic radiation. I want the IMRT. I hope the second opinion will confirm that I am a good candidate for IMRT. I will be getting vaginal cuff brachytherapy no matter what.

Double Whammy's picture
Double Whammy
Posts: 2264
Joined: Jun 2010

Great idea, Christine using the profile information:

About Suzanne (Woodland, CA), Age 63

How and when did you learn about your cancer?
Routine well woman exams (mammogram and Pap smear) prompted further testing. I was diagnosed with both breast and endometrial cancers in late April 2010.

What types of treatment(s) have occurred?
On May 11, 2010, I had a lumpectomy and sentinal node biopsy for the breast cancer. Stage I,Grade 2 estrogen positive, progesterone negative, Her2 negative invasive ductal carcinoma, Oncotype DX = 31.

On July 1, I had DaVinci robotic assisted hysterectomy. Amazing recovery, that's all I can say. Most of my friends who have previously had hysterectomies aren't speaking to me! Cancer was Stage 1a, Grade 1. No adjuvant treatments recommended. Whew.

I began chemotherapy (Taxotere and Cytoxin) for the breast cancer July 23, 4 sessions 3 weeks apart. Will then do radiation for 6 weeks, then aromatase therapy.

What have been the most important things that have helped you through your survivorship?
Being able to communicate with people who understand. If you haven't been through or going through this process, you just don't understand!

What have you learned from your experiences that you would like to share?
To "let go and let God"

Are there positive experiences you would like to share?
Positive and surprising support from many many friends.

What else would you like to tell us?
I'm bothered by why there appears to be so little awareness of gynecologic cancers amongst the general population. Plenty of awareness of breast cancer for which I am not criticizing since I have it, too, but don't see much hype about what symptoms to look for, getting regular exams and why. I got regular exams and both cancers were detected on them, but I had no symptoms of either (postmenopausal bleeding or paplpable breast lump)

I'm also bothered by the number of individuals (and their surgeons)who go into surgery expecting early stage, non-aggressive cancer and get at "surprise".

RachelKass
Posts: 3
Joined: Jul 2010

Rachel Kass

Diagnosed with DES and endometrial cancer on August 28, 1991. Status post radical Hysterosalpingoopherctomy and removal of lymph nodes as Stage IIB Endometrial cancer with DES Cancer, adenomyosis, fibroid tumors and polycystic ovarian disease on September 30, 1991. I was in Ovarian failure at the time of surgery and placed on HRT until this year when my GP decided that I had been on hormones long enough. I *still* have hot flashes without the HRT. I was 35 years old when diagnosed. I live in Minnesota.

susafina
Posts: 134
Joined: May 2010

Hi Everyone,
I have learned so much allready from all of you and received so much support fromm all of you that I figured it is about time I introduce myself. My name is SUE and I just celebrated my 54th birthday. I was diagnosed in November of 2009. I had surgery that month and was staged as Grade 1 cell at stage IIIC. I just completed full pelvic radiation with a Cisplatnim chaser followed by four cycles of Carb/Taxol. I remain with peripheral neuropathies of my hands and feet (not fun). I had my first post treatment CT which I reported to all of you and I am dancing with NED.
Now I want to focus on feeling better and get healthy!! I really appreciate all of your suggestions and am learning so much from all of you. If I had to be in this club I count myself lucky to have met incredible, sweet and caring members!
SUE

PS I hate being bald!!

RoseyR
Posts: 462
Joined: Feb 2011

Dear Sue,

I'm new to this wonderful site and have posted a few comments today on what I've researched about preventing, and treating chemo-induced peripheral neuropathy; please try to find them.

In turn, I have a question about your full pelvic radiation with a 'cisplatin chaser." Soon to begin radiation, and under treatment since October in Philadelphia, I FIRST learned of this protocol through an accidental encounter with the head chemo nurse a few days ago. She said, "If you're starting pelvic radiation soon, you might want to add cisplatin, which makes it more effective."

What I couldn't figure out is why neither my oncologist or radiologist had ever suggested it. I am having trouble deciding whether to do just brachytherapy or full pelvic radiation first (IMRT) followed by brachytherapy.

Could you share the side-effects for you of pelvic radiation with cisplatin? Was the dose of cisplatin high, moderate, or low?
Had you had any chemo prior to this regimen (any rounds of taxol/carboplatin?)

Appreciatively,
Rosey R

susafina
Posts: 134
Joined: May 2010

Hi Everyone,
I have learned so much allready from all of you and received so much support fromm all of you that I figured it is about time I introduce myself. My name is SUE and I just celebrated my 54th birthday. I was diagnosed in November of 2009. I had surgery that month and was staged as Grade 1 cell at stage IIIC. I just completed full pelvic radiation with a Cisplatnim chaser followed by four cycles of Carb/Taxol. I remain with peripheral neuropathies of my hands and feet (not fun). I had my first post treatment CT which I reported to all of you and I am dancing with NED.
Now I want to focus on feeling better and get healthy!! I really appreciate all of your suggestions and am learning so much from all of you. If I had to be in this club I count myself lucky to have met incredible, sweet and caring members!
SUE

PS I hate being bald!!

susafina
Posts: 134
Joined: May 2010

Hi Everyone,
I have learned so much allready from all of you and received so much support fromm all of you that I figured it is about time I introduce myself. My name is SUE and I just celebrated my 54th birthday. I was diagnosed in November of 2009. I had surgery that month and was staged as Grade 1 cell at stage IIIC. I just completed full pelvic radiation with a Cisplatnim chaser followed by four cycles of Carb/Taxol. I remain with peripheral neuropathies of my hands and feet (not fun). I had my first post treatment CT which I reported to all of you and I am dancing with NED.
Now I want to focus on feeling better and get healthy!! I really appreciate all of your suggestions and am learning so much from all of you. If I had to be in this club I count myself lucky to have met incredible, sweet and caring members!
SUE

PS I hate being bald!!

susafina
Posts: 134
Joined: May 2010

Hi Everyone,
I have learned so much allready from all of you and received so much support fromm all of you that I figured it is about time I introduce myself. My name is SUE and I just celebrated my 54th birthday. I was diagnosed in November of 2009. I had surgery that month and was staged as Grade 1 cell at stage IIIC. I just completed full pelvic radiation with a Cisplatnim chaser followed by four cycles of Carb/Taxol. I remain with peripheral neuropathies of my hands and feet (not fun). I had my first post treatment CT which I reported to all of you and I am dancing with NED.
Now I want to focus on feeling better and get healthy!! I really appreciate all of your suggestions and am learning so much from all of you. If I had to be in this club I count myself lucky to have met incredible, sweet and caring members!
SUE

PS I hate being bald!!

susafina
Posts: 134
Joined: May 2010

Hi Everyone,
I have learned so much allready from all of you and received so much support fromm all of you that I figured it is about time I introduce myself. My name is SUE and I just celebrated my 54th birthday. I was diagnosed in November of 2009. I had surgery that month and was staged as Grade 1 cell at stage IIIC. I just completed full pelvic radiation with a Cisplatnim chaser followed by four cycles of Carb/Taxol. I remain with peripheral neuropathies of my hands and feet (not fun). I had my first post treatment CT which I reported to all of you and I am dancing with NED.
Now I want to focus on feeling better and get healthy!! I really appreciate all of your suggestions and am learning so much from all of you. If I had to be in this club I count myself lucky to have met incredible, sweet and caring members!
SUE

PS I hate being bald!!

susafina
Posts: 134
Joined: May 2010

Hi Everyone,
I have learned so much allready from all of you and received so much support fromm all of you that I figured it is about time I introduce myself. My name is SUE and I just celebrated my 54th birthday. I was diagnosed in November of 2009. I had surgery that month and was staged as Grade 1 cell at stage IIIC. I just completed full pelvic radiation with a Cisplatnim chaser followed by four cycles of Carb/Taxol. I remain with peripheral neuropathies of my hands and feet (not fun). I had my first post treatment CT which I reported to all of you and I am dancing with NED.
Now I want to focus on feeling better and get healthy!! I really appreciate all of your suggestions and am learning so much from all of you. If I had to be in this club I count myself lucky to have met incredible, sweet and caring members!
SUE

PS I hate being bald!!

susafina
Posts: 134
Joined: May 2010

Yikes my computer froze so I didn't think I posted. I guess it posted 6 times to be exact! Sorry all

Wriggit
Posts: 1
Joined: Aug 2010

Where do I start? I have the BRCA1 gene, as does my mother. I had breast cancer in 1999, and had a bilateral mastectomy with latismus dorsii reconstruction, followed by chemo for 6 months. I have been cancer free since then.

My mother started her personal cancer journey in 1978 with bowel cancer (resection only); breast cancer in 1991 (lumpectomy, radiotherapy and treatment with Tamoxifen for 5 year); bladder cancer in 2007 (Surgery, BCG vaccinations- this has recurred every 6 months or so); Uterine cancer 2009 (MMMT- treated with hysterectomy and pelvic radiation.She also has had laser surgery for precancerous cells on the cervix, and surgery for a squamous cell carcinoma on her arm.

Last Monday August 9th 2010, she was told she had a secondary MMMT in pelvis which is squeezing her ureter and causing a backup of urine in the kidney. She was told there was nothing they could do for her MMMT, but they could manage the pain. ANd that was it! She was flattened, devastated.... But, we got a second opinion. She will now start a Taxol-Carboplatin chemothepy regimen today. At least she has some treatment and hope, because the news given by her very insensitive (and former) oncologist crushed the life out of her. That will buy us time while I get further information on other treatments such as HIFU and Cyberknife, plus the SPDT treatment in China. Has anyone else investigated these?

On another tack, my oldest brother was diagnosed in 2007 also, with bowel cancer. He had a resection and chemotherapy. It has since metasisized 3 times to the liver. The first 2 times he was treated with laser ablation, but that hasn't worked as it has grown back again, and this time it brought a friend with it. He will have a resection shortly, and hopefully that will be that. The issue (above all that) is that he is autistic, so it is all very confronting for him, but also for Mum who bears the brunt of his rantings, anger and fear. Not good.

And then there has been Mum's father who died of bowel cancer, Mum's sister that died of breast cancer, and her daughter with ovarian cancer- still alive and doing very well.

Me? I am currently caring for and overseeing the care of my mother and brother. I have moved from Melbourne (Australia) to Perth (also Australia) to be here to support them, plus my father who has Parkinson's and Alzheimers. It is a complex household.... Plus, I have my two teenage daughters with me as well. Another variety of complexity there....

I have used my profile information and pieced it together- so this may sound disjointed as you read it. Apologies.....

Chris43
Posts: 2
Joined: Dec 2010

My name is Christine and I have currently chemotherapy for stage IV uterine cancer.
( Taxol and Carboplatin )
I had external rad. Nov./ Dec.2010.
My age is 42 years.
I have recurr.brest cancer too.

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Christine, I am sorry you have to be here. I also have had breast cancer orig @ age 41, then recurrence @48. Three years ago @56, diagnosed with UPSC, Stage IV. I was treated with tamoxifen for nearly 7 yrs which may be implicated in my uterine cancer. Do you have anti-hormone treatment?
This is a great resource board to bring all your questions and concerns to, as we try to help each other as much as possible.
Welcome,
--Annie

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Christine, I am sorry you have to be here. I also have had breast cancer orig @ age 41, then recurrence @48. Three years ago @56, diagnosed with UPSC, Stage IV. I was treated with tamoxifen for nearly 7 yrs which may be implicated in my uterine cancer. Did you have anti-hormone treatment?
This is a great resource board to bring all your questions and concerns to, as we try to help each other as much as possible.
Welcome,
--Annie

HellieC
Posts: 425
Joined: Nov 2010

Brief (!) diagnosis history:
Sept 2001: D&C for abnormal bleeding - diagnosed as hyperplasia with atypia(? cancer)
Oct 2001: TAH/BSO - no cancer found - declared cured - no further treatment required!
Dec 2007: abnormal bleeding - scanned, biopsied and diagnosed as vaginal vault recurrence (adenocarcinoma, Grade 1) - original hysterectomy sample re evaluated - still no cancer found.
Jan 2008: 6.5 weeks radiotherapy (total dose 60 Gy) to pelvis
July 2008: declared NED and stayed clear for 2.5 years until
July 2010: abnormal bleeding - scanned and found second recurrence at vaginal vault and wrapped around sigmoid colon
August 2010: Resection and sigmoid colectomy. All visible cancer removed. Biopsies taken from bladder and peritoneum during surgery showed adenocarcinoma microscopic metastases (Grade 2).
Sept 2010 - present: receiving taxol/carboplatin, 6 cycles, one cycle every three weeks.

What a great idea to have a thread where we can all summarise our situation! I have just had my 5th taxol/carboplatin cycle - one more to go! I am fighting a second recurrence of adenocarcinoma diagnosed in July 2010. I had surgery in August 2010, to remove visible tumour growing in vaginal vault, pouch of douglas and wrapped around sigmoid colon. Have a colostomy as a result but I'm getting used to it gradually!
Wishing you all well
Helen

Domina's picture
Domina
Posts: 62
Joined: Dec 2010

54 yrs. old
Endometrioid Adenocarcinoma Grade 2

How and when did you learn about your cancer?

Symptoms: Vaginal bleeding/Ovarian pain 10/23/10.

Status: 2 years post menopause.

Tests: Transvaginal Ultrasound showing thick endometrial lining 9mm plus Uterine mass.
Diagnosed: Endometrial Cancer Grade 2 on 12/21/10 via D & C with Hysterscope.

Scheduled for complete hysterectomy on 1/12/11, including uterus, fallopian tubes, ovaries, cervix & lymph nodes. Possible appendix removal & biopsy of bladder & rectum.

Then I will learn staging & prognosis.

firstsister
Posts: 13
Joined: Sep 2009

Hi all you wonderful ladies. I'm responding to linda's request for a roll call. I first joined cancer survivors network in Sept. 2009 because my brother has lumbar/sacral plexopathy, a long term result of radiation he had about 15 years ago for anal cancer. I was looking for help for him.

Now I have Stage 3-C UPSC diagnosed Sept. 2010 after complete hysterectomy. Have had three cycles of carboplatin/taxol and start 5 weeks of radiation probably next week followed by more chemo. So far so good. CA 125 at 14.8 down from 92.6 before chemo. Blood numbers good. Nervous about radiation and especially long term effects of it.

I'm 72 and live in central Florida.

What a comfort, source of information and inspiration you all are. Happy New Year and a better 2011.

RGK's picture
RGK
Posts: 20
Joined: Oct 2009

Thought I'd add myself to this list:

I was diagnosed with Stage IIIc, grade 1-2 endometrial adenocarcinoma in May 2008; went through 6 rounds of carboplatin/docetaxol, 26 external radiation treatments, and 1 brachytherapy, finishing in 12/08. Clean exams and PET/CTs until last week, with suspected recurrence in mediastinal and hilar lymph nodes (in chest).

I'm 51 years old, and live in Minneapolis, treated at the University of Minnesota.

Very grateful for the knowledge and support on this list!

Reg

Harrber's picture
Harrber
Posts: 9
Joined: Feb 2011

Firstsister - Wanted to share my experience of pelvic radiation with you -
I had no skin problems from it - although that is a potential problem and can be managed with good skin creams. The biggest issue (aside from baring your butt to three technicians who were all younger than my kids I think!) was the GI reaction. You will want to have a prescription for Lomotil on hand and don't hesitate to use it. There was discomfort - sometimes burning after having a bowel movement - medicated tucks or some kind of medicated wipe is also good to have on hand as well as hydrocortisone or some cream you can use on your bottom. I never had nausea - it is really lower GI that is affected. And if you watch what you eat it helps - stay away from raw fruits and veggies with skin and seeds - and nuts - they will give you a list of foods that might aggravate your colon.
There is some fatigue with radiation - but when you are still really recovering from chemo it is not surprising. So you need to rest - I am not a napper, but I learned how important they are when you are in treatment.
I did have a couple of acupuncture treatments and I think they helped to some extent with the GI issues - and definitely with the fatigue.
And you have to be careful to stay hydrated since you can become dehydrated from the "over-activity" of your GI system. It helps to drink a lot. I learned that lesson the hard way.
The good news - and I know it is different for everyone - but I have not had the nightmare of long term effects I had worried about - a couple of people told me their war stories about this - my docs said that things had changed in how they do the radiation field in the last few years and how they have learned to protect your colon as best they can. So while my colon is still what I call "funky", I do not have daily problems - I have flare-ups - they might last a few days - but they are not debilitating, and I have learned to live with this new system I have. I have been told it will get better as the colon heals - but even if it stays this way, I can deal - I keep lots of reading material and crossword puzzles in the bathroom - just in case.
I hope you have a relatively smooth go of it. None of this is easy - but having a sisterhood of caring people who have gained wisdom along the way, for me, helps me think I can do this if I have to.
Good luck

zarkapopovic
Posts: 30
Joined: Jan 2011

I live in Northern CA near Chico. I am being treated at the Palo Alto Medical Foundation in Mtn. View CA for endometrial adenocarcinoma stage IVB, grade I. Am trying to get into a clinical trial. I had surgery in November of 2010 and have not had any chemo or radiation yet due to an open wound that needed to close (it is closed).

There is another worldwide listserve that has been helpful to me that you may be interested in learning about called eyes on the prize. If you search the internet you will find them.

Hope to hear from everyone,

Zarka

minniejan
Posts: 88
Joined: Dec 2010

I live in SE Pennsylvania between Philadelphia and Lancaster. Prior to my diagnosis I was a very healthy active 58 year old. (My history is multiple basil cell skin cancers in my 30's, fibroids and benign uterine polyps in my mid and late 40's and a history of high blood pressure, which was under control with medication.)

My uterine cancer was first diagnosed on December 14th, 2010 after just mild symptoms the previous week. I had surgery, total abdominal hysterectomy, bilateral salipingoophorectomy, omentectomy, pelvic lymph node dissection on December 29 at the Hospital at the University of Pennsylvania. I pushed for the quickest surgery possible due to the diagnosis of Uterine Papillary Serous Carcinoma. I spent New Years in Philly, something I always wanted to do! :) I slept through the fireworks!!! I have found that HUP is an amazing place, and am very pleased so far with the team approach at the Jordan Center for Gynecological Cancer at Penn.

The cancer is stage 1 with a grade of 3. I will start chemo on Feb. 8, ( Carboplatin and Taxol) and start vaginal cylinder brachytherapy on Feb. 16.

I have noticed others with thyroid nodules on this website, I too was diagnosed with 3 of them during a pre-surgery PET scan and am now being followed by an endocrinologist as well. I was told they are too small to biopsy and to watch them for 6 months.

Jan

RoseyR
Posts: 462
Joined: Feb 2011

Dear Minniejan,

I too am in treatment for recently diagnosed uterine cancer at HUP.

I love the Abramson Cancer Center--bright and cheerful--and find my oncologist and radiologist very competent although wish I could get an occasional "consultation" with the onc; not once since diagnosis five months ago have I had even a half-hour sit down session with him/her (trying to proect identity), just quick pelvic exams followed by pacing around the room and "do you have any questions?" The few emails (three) I have ever sent get referred to the chemo nurse, who calls and tries to answer. So my only dissatisfaction is with quality of communication: pretty important, I'd say. Radiologist on other hand is open to appointments involving JUST consultation and even gave me her email address.

Have just finished third round of taxol/carboplatin: your own regime, with amazingly few side effects so far. (See earlier posts on trying to avoid PN) but a bit worried about how MUCH radiation to pursue; second opinons are conflicted on just brachy versus full pelvic plus brachy. Need to decide within a week! Worry about longterm effects of pelvic as I need to go back to work in September to teach twelve hours a week: not a lot, but attacks of diahrrhea are one thing at a desk job and another if you're in front of a class!

Let me know how the brachy is going; will be starting myself in about three weeks.

Have fantasized about starting a small support group in Philly for women with high grade (2-3) endometrial cancer but would prefer a small group (5-8?) who are upbeat, on the whole, and determined to survive. Perhaps we could get together once a month for dinner at great local restaurants or host each other in our homes or apartments?

Anyone interested?

Rosey R

RoseyR
Posts: 462
Joined: Feb 2011

Dear Minniejan,

I too am in treatment for recently diagnosed uterine cancer at HUP.

I love the Abramson Cancer Center--bright and cheerful--and find my oncologist and radiologist very competent although wish I could get an occasional "consultation" with the onc; not once since diagnosis five months ago have I had even a half-hour sit down session with him/her (trying to proect identity), just quick pelvic exams followed by pacing around the room and "do you have any questions?" The few emails (three) I have ever sent get referred to the chemo nurse, who calls and tries to answer. So my only dissatisfaction is with quality of communication: pretty important, I'd say. Radiologist on other hand is open to appointments involving JUST consultation and even gave me her email address.

Have just finished third round of taxol/carboplatin: your own regime, with amazingly few side effects so far. (See earlier posts on trying to avoid PN) but a bit worried about how MUCH radiation to pursue; second opinons are conflicted on just brachy versus full pelvic plus brachy. Need to decide within a week! Worry about longterm effects of pelvic as I need to go back to work in September to teach twelve hours a week: not a lot, but attacks of diahrrhea are one thing at a desk job and another if you're in front of a class!

Let me know how the brachy is going; will be starting myself in about three weeks.

Have fantasized about starting a small support group in Philly for women with high grade (2-3) endometrial cancer but would prefer a small group (5-8?) who are upbeat, on the whole, and determined to survive. Perhaps we could get together once a month for dinner at great local restaurants or host each other in our homes or apartments?

Anyone interested?

Rosey R

lawyerserv
Posts: 5
Joined: May 2011

Hi Rosey, I am soooo interested you have no idea. I am determined to survive and am looking for encouragement. I live in Broomall in Delaware County and am very interested in meeting others just like us. I would be happy to host. Please let me know.

Arlene

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