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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.

ro_NJ
Posts: 11
Joined: Jul 2009

Hi Bella09

I think the hospital I'm going to doesn't have that equipment - but I will ask. They're saying since I need a full hysterectomy and ooperectomy, and removal of the lymph nodes they need to do a bikini cut.

Glad to hear your lymph nodes were clear - what a relief!

ThirdHorn
Posts: 3
Joined: Jan 2008

I had a total hysterectomy, bilateral salpingo oophorectomy, and removal of lymph nodes - all done robotically. Very slick.

bonnyboop's picture
bonnyboop
Posts: 9
Joined: Sep 2009

Try drinking pydealite (sp?). It's given to children who are ill to keep their electrolyites up. Salt is good for your body but can thin your blood and you can bleed easily after chemo/radiation treatments. At least I did. Bruised easily too. Best of luck to you...

california_artist's picture
california_artist
Posts: 860
Joined: Jan 2009

Mia
In response to your post of June 4
I have to apologize. I had a PET/CT right after I wrote that post to you and then I went to California for month to deal with a 10x10x20 foot storage space, where i had to decide how to let go of half of the stuff,and I apparently lost my mind somewhere in those storages. At one point I had four storage spaces so I could keep track of what was going where. The PET/Ct came back with no metablic activity. So I just allowed myself to not think about cancer, very much for a month.

As for my story. I have UPSC, surgery April 08, no lymph nodes taken, confusion, keeping an eye on things, CT, PET/CT, pap type tests every four months, lots of lifestyle and diet changes, and just really hoping for that shoe not to drop. I am going to keep reading the posts to see how you are doing. I hope everything is going well for you now.
I offer my number to anyone 9475179417 or you can email at claudiaallen27@yahoo.com me if you have some thoughts. Sometimes talking to a friendly voice is much more comforting than a computer. Some of these gals are very funny and refreshing on the phone.

As always, love and hope to us all,

Claudia

ThirdHorn
Posts: 3
Joined: Jan 2008

Howdy! Margie (aka ThirdHorn) is present and accounted for!

I was diagnosed with UPSC in January 2008. I had all my inner parts removed via Da Vinci robotic surgery. Cancer was confined to the uterus; no lymph node involvement. Two-and-a-half days after surgery, I was home - no restrictions. After much research, I decided against having chemotherapy or radiation. I see my gynecologic oncologist every four months, and, so far, so good. The most annoying side effect I had was bloating. They discovered that I was accumulating ascites by the liter, so I had my belly drained three or four times. My oncologist was mystified; and then, it stopped happening. We still don't know what the deal was. I also developed lymphedema in both legs (I had problems with it in the past, and the surgery just made it a little worse). I went to a lymphedema clinic for six weeks of manual lymphatic drainage and lessons in wrapping my legs. Worked like a charm. I feel very, very fortunate for lots of reasons.

I also had breast cancer in 2003, for which I had chemotherapy and radiation. The chemotherapy worked extremely well, and we were able to shrink the almost 5cm tumor so that it was almost imperceptible on the mammogram. I was, therefore, able to have a lumpectomy. Again, no lymph node involvement. Excellent outcome.

One of the best things I did (besides reading all the posts here) was get a page at CaringBridge.Org. It's free and it allowed me to keep in touch with my friends all at once, and it gave them a chance to keep in touch with me AND everyone else. I gave my password to my brother and to a friend, so they were able to post something as soon as I was safely out of surgery. Very cool.

I'm keeping all of us in my prayers. A stalwart group!

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

I'm interested too in your stage. It's gutsy to NOT get treatment. What did you base this decision on??? I'm stage 3a UPSC and got 6 rounds of chemo only - now in surveillance.

Mary Ann

bonnyboop's picture
bonnyboop
Posts: 9
Joined: Sep 2009

My name is Bonny; I just turned 50 this March. Was diagnosed Oct/08 with uterine cancer, endometrioid adenocarcinoma, figo grade 2, moved from my uterus to my cervix, with cells found on my bladder. Radical hysterectomy Nov/08, 33 external radiation treatments Jan/Feb 09, 4 chemo treatments paclitaxol/carboplatin Mar-June. Happy to have done my radiation first....was quite sick for 10 days after each chemo treatment..nausea, aching muscles, fatigue...generally felt like crap!! Loss of my hair has shown me just how grey I really am!!! But am loving the new short do!! Have chemo-brain!!!! So if I ramble, forgive me....thank goodness I'm a sloww typist...at least my brain can keep up!! As of a month ago (2 months after chemo) my muscles and joints are becoming increasingly stiff and sore. Do what I can to exercise, but energy levels are still low, tire easily, and no sleep thanks to hot flashes!!! Have heard stiffness is a side effect and can take up to a year to go away. Aspirin helps as well as keep moving, and stretching. Bladder is good (considering last 8 radio treatments focused on it), bowels are not bad, immodium is my friend, but diarrea is not the problem, it's the inability to hold it. So I know all the bathrooms in a 20km vicinity!! I live in Frankford, Ontario, Canada. Small town north of Trenton, Ontario, 2 hrs east of Toronto......It's comforting to know there are others that can relate. (long winded aren't I...chemo brain)

thank you
Posts: 77
Joined: Jun 2009

That is the BEST REVIEW of the disease and treatment course I have ever heard!!! Keep up with this attitude. I wish you the best

bonnyboop's picture
bonnyboop
Posts: 9
Joined: Sep 2009

I went on "thank you"s profile....you are the lady from Greece who's mom has cancer.....and you had a new baby!!! Thank you for your comment. You are doing exactly what you and your mom needs right now and I must tell you, that wee babe of yours is THE BEST MEDICINE you're mom can ever have. My daughter just had a daughter "Willow" May 26th 2009(exactly 2 wks after my 3rd treatment). I must tell you, that sweet baby girl is what keeps my attitude up!! She is the spirit that lights my path to good health. I want to know her for as long as I possibly can and someday know her sisters and brothers and my son's children, if we are lucky enough to have more grand-babies. You may not tell your mom everything, I'm sure she knows deep down and loves you all the more because you do not want her to worry anymore than she has to. You are a lovely daughter and now that you have your own child, you know the love that a mother feels for her children. Bless you and your mom. Good health and happiness to your family.
I try very hard to keep my spirits up especially around my family (daughter 28, son 21 and my adorable husband) after all, they too are under a lot of stress. They don't need to feel my stress as well, they have their own. I have good friends that I can break down around. They are wonderful and seem to be able to handle my cancer because it is not directly related to them. Lean on who you can. You'd be surprised how many people are out there and willing to listen...just like you did. All the best to you...Bonnyboop

thank you
Posts: 77
Joined: Jun 2009

It's so relieving to read commends like yours! I am at starbucks trying to study for my rheumatology boards. I come here early morning each weekend to study, but many times it is so difficult to concentrate.... going back to what happened and what I should have done to prevent all this suffering of my mom.... Well it's done, and I can not change it.
You are so right about the baby. They are so connected now. There are many times that I see them playing together and it is difficult to hold my tears. I know that it would be much more difficult to survive all this without my daughter. I remember that she was the one who pulled my mom's first hair after the chemotherapy. We were both shocked, but started laughing, so the baby won't be scared. We went to find wings and I was putting some crazy wings to my daughter's head... laughing again....
The GOD sent your granddaughter to you at this time. I can imagine you hugging her, and as she grows older teaching her what you know. No matter if your daughter is a mom and has her own family SHE NEEDS YOU NOW and you will stay with her for LOOOOOONG TIME to help her rise all her children.
Have a nice day
Chrysoula

bonnyboop's picture
bonnyboop
Posts: 9
Joined: Sep 2009

Good luck to you with your studies....a good thing to keep your mind occupied, but I can understand it would be hard to focus. You cannot dwell on what you cannot change. Just came home from seeing my "baby Willow". Rocked her to sleep.....and would have liked to stay beside her forever!!! Thank goodness my son-in-law is so understanding....we are there a lot!!! I never got a wig when I lost my hair. Just wore scarves. Some ladies from work lent me theirs and even a woman I never met before gave me a lovely pink one with "breast cancer" ribbons on it!! People are amazingly compasionate to strangers....our female connection I guess. My best to you and your family...keep your chin up. Boop

livenow09's picture
livenow09
Posts: 63
Joined: Apr 2009

Aloha Jill... welcome (unfortunately) to the UPSC site; I was born/raised in NYC (living in Hawaii), was diagnosed in May of 2008, also had to insist on further testing for vague symptoms (vaginal moisture, postmenopausal NOT NORMAL); also discovered I had UPSC; tumor (1 cm x 1.5 cm)was grade 3; very fortunate to have been referred by primary dr's RN (!) to an OB/GYN at a women's center for the biopsy; who in turn sent me directly to an gyno/onc; long story short, stage 1A; surgery/nodes/washings, then had 8 cycles of Carbo/Taxol,finished 11/26/08; no radiation (this specialist's research showed no significant clinical advantage to radiation for stage 1A) but he did encourage me to have 8 cycles of chemo, rather than 6, since my CA 125 kept dropping but not leveling out; just went for my third 3 month check up and all is well (except for anxiety which builds terribly before I go for my exam)CA 125 holding in the low double digits (11, 10, 11); I remind myself I'm one lucky person to have caught this cancer so early and so are you...sometimes I feel as if I have a mission to tell every woman out there to not take no for an answer or ignore subtle signs of change; heard of a woman in TX who hands out fliers about Uterine cancer at foot ball games;
best of luck and welcome
Marie

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

I was in peri-menopause and had migraines every month. The last few months I started to bleed a little more than usual. Instead of my primary care doctor I want to the gyn for my yearly physical. At that point he thought peri-menopause. However, my PAP came back abnormal. He than scheduled me for a D&C. Due to the position of the cancer, he could not finish the D&C. The Pathology report came back as Grade 3, mixed cell. I was then referred to a gyn/onc.

The gyn/onc told me that upon looking at my path report, he thought that I would probably need chemo/radiation. He did explain that sometimes the path report from surgery is downgraded but he doubted this in my case.

Surgery was done Aug 26th with everything removed. Luckily I had robotic surgery and was home the next day. The pathology report came back as a Stage 1C, Grade 2. My doctor had all smiles when he told me my diagnosis. According to him, no further treatment is necessary. However, I am in the process of getting a second opinion at Moffitt In Tampa, FL especially since the pathology reports were different. Moffitt is going to review the slides from both surgeries.

This site has been very helpful because it seems that it's unknown what treatment is necessary for endometrial cancer. Seeing a few posts with others in the same stage and grade is very helpful. I've tried with little success to find any clinical trials for my stage. It seems that some doctors opt for further treatment (chemo/radiation) while others decide upon no further treatment. Also, I have been researching diet/nutrition regarding uterine cancer.

Susie

Jen457
Posts: 2
Joined: Sep 2009

Hi Ladies,
Just found this site, have been reading and posting to an ovarian cancer site as I was told that this type of cancer acts more like ovarian cancer than uterine. The EIC stands for Endometrial Intraepithelial carcinoma. On the lab report it states with peritoneal carcinomatosis so I am stage 4. Had 11 of 20 test positive. I had breast cancer in '94 and this could be the result of the tamoxiphen I took to prevent reoccurrence of breast cancer. I had a hysty in 2007, did six rounds of carbo and had a reoccurrence in Aug 2008. Tried chemo again but blood counts were terrible for so long that they tested the tumor and went on Megace for 3 months. Loved it. A pill in the morning and one in the evening but the Megace did not work. Had a terrible cat scan in January 2009. Changed to Avastin, Cisplatin and Gemzar in January and had a reaction to the Cisplatin--not fun. Genentech is picking up the tab for the Avastin since I meet income guidelines. Had a great cat scan in April but tumor markers started going up in late May. Had another cat scan and they found one tumor so was switched to Avastin and Taxol. Am getting neuropathy in my hands and feet. My doctor has told me that the chemos insurance will pay for are limited as this type of cancer has not been studied much and the chemo has to be on one of three lists. Overall, I am doing fine right now. I am going on a bus trip to New Orleans so am looking forward to that. I hope all of you have something fun planned on your calendars.

wuzzle
Posts: 8
Joined: Oct 2009

My name is Janis and I live in southeast Michigan. My husband calls me wuzzle.
I had a hysterectomy in 2007 and we found uterine cancer II-b. I opted for brachytherapy - yuck!. I had a recurrence in 2008 and did 6 chemos of Taxol/carbo. I had another recurrence in 2009 and did 25 abdominal radiation treatments and started Doxol chemo. Last Friday, the doctors stopped the Doxol treatments because my CA125 kept doubling, now at 107. I have a Cat scan on Thursday and talk to the doctors on the following Tuesday. I am scared and tired and I guess that has made me reach out to you and sign up on this website.

Thanks for listening,
Janis

bonniesue
Posts: 126
Joined: Apr 2009

so sorry to hear of the reoccurrences. I am not sure of what grade you are or where are your reoccurrence but maybe a PET/CT fusion overlay (NOPR) study to see better reoccurence. How many lymph nodes did you have sampled originally and do you know the depth of invasion or grade. Could you get your parafilm block of path and see what chemoreceptors would work by having it tested? It is very upsetting and these are just questions I would have. I am glad you have a supportive hubby as this is a plus. You and he are in my prayers.

wuzzle
Posts: 8
Joined: Oct 2009

BonnieSue - I will be seeing the doctors next Tuesday and I will ask about the parafilm block of path you mentioned and about the chemoreceptors. I know that my cancer is estrogen positive and that the original staging was 2-b. I had 20 lymph nodes removed during the original hystorectomy that were clear of cancer. I currently have 4 lymph nodes that have 2-3 cm cancer growths in them in my abdomen area.

Thanks for writing back and for the suggestions. It's nice to make contact! Thanks for the prayers. I am sending good wishes to you and yours. Janis

bonniesue
Posts: 126
Joined: Apr 2009

Good, hope you get some answers. maybe also get a copy of your path report. What grade are you or UPSC or well differentiated? It is difficult to sometimes get info as you want what works the best for you. Blessings. bonnie

california_artist's picture
california_artist
Posts: 860
Joined: Jan 2009

might like to add to their original posts.

lociee's picture
lociee
Posts: 103
Joined: Apr 2009

Hi Janis, by name is Mia. I had a hysterectomy three years ago tomorrow (Halloween). Then two years of pain - then the discovery of a tumor - uterine cancer spread - tumor along my colon and a tumor on my lung. Had carbo/taxol last fall - then radiation, 25 full pelvic/7 blasts to the pelvic tumor. Cat scan shows the tumor is starting to grow again. They want me to start hormonal treatment - then back to taxol. But..... I have so many aches and pains from radiation that I don't feel I can take anything else on. My CA125 remains low - @9 - but the tumor grows! So much for the CA125. What happened with your CAT scan? Mine is in about two weeks. I understand the scared and tired. I am, too!

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

Just an update from my previous information. I'm Stage 1C, Grade 2 endometrial cancer. Had surgery Aug 26th and will start Brachy Tuesday morning at Moffitt Center. Moffitt is located in Tampa, FL.

cathyK's picture
cathyK
Posts: 88
Joined: Jul 2009

I am in middle michigan, and am going to southern michigan to ann arbor to my Gyn/ Onc at the U of michigan, are you going there for treatment? who are you seeing there? hope your cat scan came out clear! e mial me if you want to , showyourfaith@yahoo.com
cathyK

newbornbunny
Posts: 15
Joined: Nov 2009

endometrial cancer--all doctor said was Stage 1 but "iffy." iffy

I have had complete hysterectomy and have finished 28 radiation treatments. Supposedly these will cure me.

Ro10's picture
Ro10
Posts: 1486
Joined: Jan 2009

I hope the radiation does cure you. That would be wonderful. Wishing you this best of luck. In peace and caring.

newbornbunny
Posts: 15
Joined: Nov 2009

Why do all of the people on this site know so much about your conditions--and all I know is Stage 1, "iffy," and "internal sunburn?" I definitely was not given sufficient information about my condition by any of my three doctors. I had to go to all of my appointments alone--no family, friends all work--and I was too stunned (and ignorant) to know what questions to ask. This problem concerns me a great deal. Basically, I know almost nothing about my condition.

Kaleena's picture
Kaleena
Posts: 1227
Joined: Nov 2009

Ask for your reports. It should say on there. Also, take a list of questions to ask. I know once you get there your mind blanks out. I found out a lot of what to ask from this site. It has helped a lot.

bots's picture
bots
Posts: 53
Joined: Sep 2009

Bunny,

I hope you can find someone to go with you next time. I have found you have to ask, ask, and ask more for answers. Fortunately, my sister and husband both went with me in what I forgot, they remembered. Also, find out if your doctors have email. At Kaiser the doctors have email, and it is really great to be able to send a question and get an answer without waiting on the telephone or waiting for the next appointment.

Lisa 00
Posts: 109
Joined: Jul 2009

oops

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I don't know if you had surgery, but if you did you need to go to the office and get a copy of your pathology report. You can also have a copy of all your medical records if you sign a release. They belong to you. Tell your Doctor that you don't understand and you want to know exactly what your stage is. Write all of the things down you want to know before you go in. It helps to have someone with you but if you can't get someone then really work with writing things down. Sometimes you have to assert yourself. When you are a patient you walk a fine line in being assertive and too agressive. But you have to be an advocate for yourself. I am out six months now from chemo and I still take a list of questions to every appt., any medication I have. I also ask for copies of my reports; lab work, scans etc. It is your right as a patient to have these and they cannot deny you this. Perhaps you need to make an extra appointment just to "have things explained." That's perfectly acceptable. It sounds like you don't even know what type of uterine cancer you have.

You can do this! I have faith in you!

Diane

newbornbunny
Posts: 15
Joined: Nov 2009

Why do all of the people on this site know so much about your conditions--and all I know is Stage 1, "iffy," and "internal sunburn?" I definitely was not given sufficient information about my condition by any of my three doctors. I had to go to all of my appointments alone--no family, friends all work--and I was too stunned (and ignorant) to know what questions to ask. This problem concerns me a great deal. Basically, I know almost nothing about my condition.

newbornbunny
Posts: 15
Joined: Nov 2009

My supposed Stage 1A endometrial cancer had metastasized even before my hysterectomy. My doctors never found the other sites.. I start chemotherapy on Wednesday, and poor health has forced me to retire. (My job was my only source of companionship and fun.) The "scar tissue" by my vagina is most likely metastasized endometrial cancer. I think I will try a Reiki master for my next cancer treatment. Has anyone else encountered anything like this? I hope not.

I'm going to "retire" from writing comments on this forum. I wasn't here very long. I thank you all for your kind words and support.

Newbornbunny

NeiceyMe's picture
NeiceyMe
Posts: 1
Joined: Nov 2009

My name is Teri and I have been lurking round the board for a couple of week. I live in a small town called Klamath Falls in beautiful southern Oregon. I am the very proud mother of three children, Jeremiah 29; Victoria 25 and Shania 5. I also have two granddaughers Josslyn and Miah who are age 2. I was diagnosed in Sept. 09 and had a radical hysterectomy, oophrectomy and lymphedectomy at Oregon Health & Science University in Portland on October 20, 2009 (two days before my 49th birthday). My tumor invaded 95% through the uterine wall and was 6.5 cm, of the 18 lymphnodes taken one peri was positive. I am Class 2 Stage IIIc when I left the hospital, but now am Class 2 Stage IIIa (not sure what caused the change). I am sitting in the chemo chair receiving my second infusion of carbo and taxol as I write this posting. I am slated for three rounds followed by 25 rounds of exteral radiation (am hoping to also work with my radiologist to get brachytherapy) and finishing up with three additional rounds of chemotherapy.

My five year old and I are currently living with my folks and they are taking care of us bot, what an amazing blessing they have been to us. My son has been my biggest advocate and resource (he is a widower who lost his wonderful wife to melanoma just three weeks after giving birth to their first child and passed away 84 days after diagnosis).

I am looking forward to getting to know many of you as we share this journey together. Linda P I have been following you closely and am so inspired by your positive outlook, "go for it attitude" and joyful heart.

deanna14
Posts: 738
Joined: Oct 2008

Sorry to hear that you are going through this, but happy that you have found the wonderful ladies on this board.
Linda is an amazing inspiration!
I hope you find this place to be very supportive. There is something very comforting about being able to talk with people who have "been there, done that."
Good luck and good health to you!

shortmarge
Posts: 296
Joined: Nov 2008

Sad to hear you have joined us but glad you found us... Lot's of wonderful women here with great support and information.

So sorry to hear about your sons wife, so, so sad.

Please join in with all the conversations, we are all here holding each others hands!

Marge

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

I was not informed either at first. I still don't feel as informed as many here. I don't think my docs wanted me to have much info - they seemed stingy with the gory details maybe to spare me anxiety hopefully.

This board has provided so much info and encouragement to be PROACTIVE. I was alone at first, and got my second opinion after gathering up my records, and now I have all these people to help answer questions and encourage me to ask my docs.

So get copies of your records, ask questions of your team, research online (nccn.com has treatment guidelines) and this board is here for you. Don't be shy - this is your life!!

Blessings, Mary Ann

newbornbunny
Posts: 15
Joined: Nov 2009

I have a growth on my labia by my vagina. Radiation therapy doctor said (on Nov. 12, 2009) that this is "scar tissue" and would go away. It has not gone away. Instead, it has grown bigger and has three points to it. Since it causes me great pain and seemed to be infected, I called this doctor last weekend. He sent me to the ER. While there I learned that my potassium level was life-threateningly low. No one checked my potassium level during radiation treatments. I spent next three days in hospital getting IV potassium. I also had X-rays and CT scans of my torso. I've always had many fatty tumors (also called lipomas). I had told doctors that I would never recognize a recurrence of cancer because of these lumps. Well, instead of some lumps, the imaging showed up white flecks scattered through my lungs and liver. My endometrial cancer was Stage IA. Doctors are amazed at what has happened to me. One doctor had told me that my cancer was the kind to have because it is so easy to cure. I got biopsies of two lumps on my belly, one right beside the incision for the hysterectomy and another one about three inches higher. Hospital doctor did not biopsy lung tissue or do anything about "scar tissue."

I have some ideas of what is going on. I'm keeping these ideas to myself. I have not had a good day since last summer, before July 10, when I was told that I had cancer. I just wanted to tell someone what has happened to me.

Probably I will have to retire because I cannot give my employer a fair day's work. I could use some good news. We all could.
Bunny

newbornbunny
Posts: 15
Joined: Nov 2009

It's been six weeks since I found the scar tissue growth on my labia and pointed it out to my doctor. Since then I have asked a nurse practitioner and two other doctors for help. Nothing has happened, except that I bought a doughtnut cushion.

My two biopsies were "inconclusive" and "dead tissue." I especially liked the dead tissue one. I've had a third biopsy of a shadow on my liver.

At first my two surgeons were so happy that my cancer was Stage IA. They were sure that they had stopped it.

Tomorrow I am calling my doctor back, since he said that his office would make an appointment for me to have the growth removed by one of my original surgeons. My doctor also believes that I should retire on full disability.

What do you think is going on with me? I have no reasons for any optimism, but having this "growth" removed and healed would help a great deal.

Newbornbunny

threegirlsandme
Posts: 11
Joined: Dec 2009

Hi, I am Sheila in Orlando FL, 46 yrs old single Mom of 3,treated at Florida Hospital Cancer Institute. Diagnosed in May 09 UPSC stage 1 B grade 2. Had emergency Radical Hysterectomy after extremely heavy bleeding.
45 lymph nodes removed, all clear. Not sure if abdominal washing occured, but def had omenectomy. had 4 chemo sessions of carbo/taxol every 3 weeks and followed by 6 rounds of bracy therapy radiation to vaginal cuff. Follow up is every 3 month CA 125 check and complete exam by my gyn/onc.He is very confident that I am all clear , but I am still in the freaking out stage, partially due to fact I have young children who need me (13 year old is youngest) I am the sole source of income and I missed 4 months of work due to heavy blood loss and then surgery recoup. I just want to know I have done all I can do to prevenet reoccurance.

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

It sounds like you had the standard treatment that many have had on this site. I am UPSC stage 3a, grade 3 - and I had the 6 rounds of carbo/taxol - no radiation. You can check treatment protocols at nccn.com and see what other options there are.

Many people are using alternative therapies in addition to traditional - I and others use meditation, exercise, yoga, diet, supplements, healing touch, accupuncture, massage separately or in combination. As Culka just mentioned, a positive attitude and talking and thinking health is important too.

I don't think there are any guarantees - I wish there was because I would be first in line to sign up!!!

Keep reading the many threads here and you will catch up on alot of info.

Blessings to you and your family, Mary Ann

deanna14
Posts: 738
Joined: Oct 2008

For Mary Ann of whoever may know...
Can you explain the accupunture and what treatment you ask for. I just found out there is an accupunturist as my hospital. Also found out from a friend that works there that they had an alternative medicine coordinator, but thought she was too "out there," so they treated her badly until she left. Anyway, do I just make an appointment and tell them my diagnosis, or do a ask for a specific treatment? I don't know anything really about acupunture. They also have therapuetic massage therapist. Soon I will be starting Yoga with some friends and a Yoga trainer. I am excited about that. I try to eat healthy, but am not completely into the all green diet thing and enjoy junk food on occasion.
Mary Ann... I will be right behind you in that guarantee line!!

Outlaw_Josie's picture
Outlaw_Josie
Posts: 42
Joined: Dec 2009

My name is Josie. I am 59 years old and was diagnosed with uterine cancer on October 13, 2009. On November 17th I had a complete hysterectomy, lymph nodes removed and peritoneal wash leaving only my vagina intact. All paths came back negative with the only concern being that the cancer had invaded the myometrium to within 1cm of the interior serosa boundary. However, the margins were clear and there was no evidence of breach into the serosa. That makes me stage 1c. As of yesterday I am done with treatment and now under observation...my choice...paps and pelvics every 3 months for the next 2 years, every 6 for the following 3 and yearly after that. I plan to live long enough to be a pain to my kid's kids.

Deanna...The therapist I spoke with asked what kind, where I was in treatment (I hadn't had my surgery at that point) and what my future treatment plans were. She was very careful to say that she did not promise a cure, but to assist my body in pain management, it's ability to help itself and in better tolerating chemo and radiation if that was one of my primary treatment choices. She went on to explain that accupuncture works with the body's internal meridians and her goal to was to make sure they were all open, aligned and working properly so that my body could be as well.

As soon as I save up the bucks for the initial consult and treatment I plan to use it as one of my adjunctive thereapies for recuperation and future good health.

Consider restorative yoga before you begin normal yoga classes as they are geared towards helping your body heal itself and make it strong enough to do the normal yoga classes...check with the instructor he/she will guide you to the right thing.

I'm working on the food part.

kindraj4's picture
kindraj4
Posts: 2
Joined: Nov 2009

My name is Kindra and I am currently in Spokane, wa having chemotherapy for stage IV endometrial cancer. I am taking taxol and cisplatin. I am 34 years old and this is my second cancer in two years, i was first diagnosed with colon cancer in 2007. This new cancer is a new primary and not a reoccurrence, I do have lynchsyndrome. Not sure what else to say.

deanna14
Posts: 738
Joined: Oct 2008

So sorry to hear of your difficulties. My brother was diagnosed Stage III Colon Cancer about 6 years ago, had chemo and has since done very well. He did not do DNA testing.
I was diagnosed with uterine cancer 9/2008 and have since finished chemo and radiation and tested positive for lynch syndrome. They tell me like an 88% chance I will get colon cancer in my lifetime. They have offered to remove my colon, but I will just continue with the yearly colonoscopies for now.
I hope you are doing well. I presume you had a total hyst. Any scans to assess effectiveness of the chemo? Hang in there!!

kindraj4's picture
kindraj4
Posts: 2
Joined: Nov 2009

Had a radical hysterectomy done and am now doing once a week, 3 times a month for 6 months of chemotherapy followed by 5 weeks of radiation. We will rescan at the half way mark to see if the hot spots have decreased. My colon cancer was stage III and i did 6 months of chemo then as well and so far the colon part looks fine. Hopefully we will get this second primary into remission and i can finally sit back and enjoy life for a little bit. Thank you for the welcome!

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