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JUST DIAGNOSED W/UTERINE CANCER...HAVE QUESTIONS, HELP?

colleenmarlboro's picture
colleenmarlboro
Posts: 7
Joined: Jul 2009

Hi, I'm 45 and have just received late stage 2 (until they check for other places) uterine cancer. I had abnormal bleeding for a couple of years and it was chalked up to being in my 40's by the docs...but symptoms got worse and worse, heavier, more pain, radiating pain, etc...until I ended up at the ER for blood loss and severe pain.

So, last week I had a D & C which gave this result. Do any of you who have had this know or remember if you had pain in your lower back, upper leg/groin area (this one kills)...hip bone, etc? I will be having a hysterectomy and they will check lymph nodes for spreading in 2-3 weeks but I wonder with all of this consistent pain if it has spread.

Also, does anyone have good diet to avoid me "feeding" the cancer cells? I've read some things on the web that are scaring me and I can't eat as I'm afraid to feed those bad cells. Literally everything seems bad for me now!

Can anyone help? THANKS.

Lisa 00
Posts: 109
Joined: Jul 2009

Hi, Colleen
I had a similar experience as you. I had two years of heavy bleeding that I chalked up to being in my early 40's. Until one day the heavy bleeding got to be heavy hemorrhaging and I knew I needed a hysterectomy. Long story short, when I finally got the pathology report it was cancer of everything. Cervix (stage 1), uterus (stage 3), both ovaries (stage 1). My symptoms were the bleeding, fatigue, weight loss, and pain that was from cramps. Twice the bleeding got stopped up by something and I got cramps until the bleeding started again. I did have some cramps when I had a uterine fibroid that came loose and was trying to pass. (I know....yuck!)
As someone who almost bled to death, if you are still bleeding the doc can give you progesterone to stop it. It was a Godsend for me until I could get to the hospital for my hysterectomy when they gave me 3 units of packed RBC's.
As far as the diet goes, it seems that many of these neoplasms are estrogen dependent. I haven't totally researched it but personally I found on the internet that milk has a lot of estrogen in it as they milk pregnant cows. Unfortunately this makes diary products a bit dangerous.
I don't want to scare you with unneccessary information right now. I remember how hard it was to wait for the surgery and then the pathology report. Hang in there. You WILL make it through this.

colleenmarlboro's picture
colleenmarlboro
Posts: 7
Joined: Jul 2009

Because I have upper leg/groin pain and other localized pain, my fear is that it has spread beyond the female parts! Did you have to have any treatments after your hysterectomy? Sorry to ask so much of you...but I just found out yesterday and keep thinking of more and more questions.

Thank you for sharing your story with me.

Lisa 00
Posts: 109
Joined: Jul 2009

Before I got the pathology results back I only knew of a cancerous ovary that they had seen on an ultrasound. The ultrasound tech did not see the cancer in the uterus and I didn't have a uterine biopsy like it sounds you have. I went into the appointment for the pathology results thinking I had ovarian cancer but didn't know what stage. I was surprised to hear that my main problem was uterine and it was hard for my brain to change gears from what all I had read about ovarian. At the same time I souldn't forget that I do have ovarian as well.

Anyway, I know how your brain is probably racing for information right now and I feel for you. I realize that, because of the suspicious pain, you're scared you have advanced ovarian. But I don't know enough to comment on it. I can only say that, if it were me, I would be trying to get the surgery asap.

The only other symptom of advanced ovarian that I can think of is abdominal bloating. Seems lots of woman have bloating. Do you have that?

I've been debating about telling you my other problem that I had and I've decided that I should tell you. I had a TIA when the bleeding got to be really bad. I woke one morning with moderate right sided paralysis and slurred speech that went away over the ensuing 10 days and is now gone. I was later told that abdominal cancers can do this. Then one of my docs told me to take blood thinners and I couldn't because of the bleeding. It was deep vein thrombosis coming from the lower legs. So if you have pain in the lower leg, please be aware of that. I wouldn't suggest you take aspirin because you're going to have surgery soon but I think you should know about it.

Do you have an obgyn/oncologist who is going to do your surgery?

As for my treatment, I just finished my chemo. Next is the radiation. I've been lucky in that my blood counts were all good during chemo. I was able to get all of my infusions on time and my white cells never got dangerously low. I'm told that age is important for that one. Your body is better able to handle the stress of chemo if you're younger and I just turned 45 in May. (okay, young-ish...)

Please don't think that you're asking so much of me by asking questions. It's nothing at all to comment or try to offer assistance when I know what it's like. Ask anything you want at any time.

deanna14
Posts: 734
Joined: Oct 2008

For what it is worth, I too had a lot of low back,leg and groin pain. Originally when it started, it was just during my period. As time went on, I had the pain most of the time. If I'm not mistaken, I think it is a pretty common complaint from those of us with uterine ca.
Good luck with your treatment and recovery.
God Bless you.

colleenmarlboro's picture
colleenmarlboro
Posts: 7
Joined: Jul 2009

You have all been more helpful than you know. I have been reading things on the internet and frankly afraid to eat ANYTHING as foods feed the cancer cells...especially prior to my surgery. You have calmed me a lot...and although I felt very isolated and alone when I got the call from my doctor...I no longer feel that way because of all of you. God bless each of you in your continued treatments and survival.

Colleen

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

Do you have 3 different cancers, or did the uterine cancer spread to your ovaries and cervix (which would account for the Stage III uterine cancer diagnosis)?? Ovarian cancer is very different than "uterine cancer with mets to the ovaries", with a very different treatment protocol and overall prognosis. Uterine cancer, even when it spreads elsewhere, is still considered 'uterine cancer' wherever else it travels in the body. I would consider your diagnosis "uterine cancer with mets to the cervix and ovaries." Because the re-located cancer cells are still the same type of cancer cell, even when uterine cancer cells travel to the lungs or brain, they are treated with chemo drugs that work best for uterine cancer rather than chemo drugs specific for the cancers that ORIGINATED in those other organs. If your affected cervix and ovaries were removed during your surgery, you probably only have uterine cancer (only! what a poor word choice! sorry). It would truly be "lightning striking Three Times" for you to have 3 distinct different types of cancers all at once. You don't want to confuse your uterine cancer with ovarian cancer and take on all of those additional worries!! Please pull out your pathology report again and look at the GRADE of your cancer. Unless you have a Grade 3 cancer (usually papillary serous or clear cell), you probably have a MUCH better prognosis and survival rate than if you had ovarian cancer too. That would be such GOOD news for you! Please double-check your pathology report or call your oncology nurse for a clarification. I hate to see someone take on more worry than warranted; it's scary enough just to have uterine cancer!

Roxanne123
Posts: 2
Joined: Nov 2009

I also was misdiagnosed for years while in my 40's and bleeding abnormally. Along with the abnormal bleeding I had severe cramping and the doctors never once ordered a intra-uterine ultrasound that would have found the uterine cancer at an early stage. When I was post menapausal at 51 I started bleeding heavily and went to the doctor who finally ordered the test. After a biopsy, it was determined that I had uterine cancer and a hysterectomy was recommended. I went to Sloan Kettering for the surgery where they found it had spread to my colon and was in my abdominal fluid, and lymph nodes. The diagnosis was Stage 4 and it has reoccurred 3 times. In 2005 I had a hysterectomy and 6 months of chemotherapy. When is came back I had a colon re-section and 8 weeks of radiation and hormone treatment. A few months
after that I had to have another colon re-section because I was blocked as a result of the radiation. Presently, #3 reoccurance, I'm in my 2nd round of 6 months of chemotherapy and am responding as my CA-125 went down 73 points already.

I am replying not to complain or scare anyone. I would like some help with resolving the anger I feel towards the doctors in my home state of NJ who ignored symptoms that I've now learned are classic for uterine cancer. I'm also very angry at myself for not going further to find out answers because I knew my body wasn't right. I'm not constantly angry but when I get scared I get extremely angry which I know is not heathy.

I'm not a nutritionist but since the diagnosis, I eat as much organic food as possible, I eat very little processed food, and a lot of fruits and vegtables.

Thank you so much for your comments, this is the first time I've been in the site and realize I need to talk about all of this to women who have lived it.

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

Colleen

I know this is all very overwhelming for you! The best thing you can do is take one day at time. First, have your surgery and find out the Stage and Grade. Is a gyn/oncologist doing the surgery? That would be highly recommended. I know you want to do everything you can to do the "right" thing. At this point, do not worry about what you eat. Just eat a healthy diet....plenty of lean protein, fruits, vegetables and grains. You need to have a good nutritional status to fight this beast!

Be careful what you read on-line...there are lots of sites out there that just prey on your anxiety! You can always ask for a dietitian's consult when you are in the hospital and/or when you are getting treatment. It is recommended that you do avoid lots of sugar. But a good basic healthy diet should do the trick!

Just keep asking questions....that is what this site is all about!

Karen

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

Hi, Colleen! I got a good book on hysterectomies written by a gynecologic oncologist, and followed the nutritional advice in that book, pre-hysterectomy. The book advised taking a time-release iron tablet each day prior to your surgery ('Slow-Fe': available without a prescription), and that you should increase your fiber in the weeks prior to surgery to get ahead of any constipation problems the anesthetics and pain killers may cause. So I ate Fiber One every day for breakfast (with dried cranberries or raisins or fresh fruit and nuts added in. And I ate a big spinach salad every day for lunch with more fruit and nuts and hard-bioled eggs as garnish. (I continued that routine throughout chemo.) An oncology nutritionist told me to eat at least a tablespoon of yogurt every day throughout my cancer journey, to help keep my digestion balanced; and a glass of cranberry juice every day for my kidneys. You'll want to drink 64 ounces of uncaffeinated fluids daily throughout your cancer journey, so you may want to start now developing that new habit. (You can have caffeine-coffee, but it doesn't count towards your daily 64 ounces of fluid.) Water and naturally decaffeinated green tea are good choices; no alcohol. Your body (liver especially) may have trouble handling mega-doses of any supplements, so please don't go that route unless prescribed by your oncologist. I continued to take my calcium tablets and a multi-vitamin throughout my cancer treatments and was told that with my healthy diet, that was totally adequate. I finished my entire initial treatment protocol last Wednesday (surgery, 6 rounds chemo, 28 external rads, & 3 internal brachys) and, so far, feel wonderful with no lasting side effects at all.

pjk
Posts: 17
Joined: Jun 2009

Does your doctor work with a nutrionist/dietician? The cancer center I was sent to by my regular gyn. has a couple of them. I bet if you are close to a cancer center of some kind, you could make an appointment to talk to a professional about your food fears.

There are great resources out there if you are in or near a large metro area. Now is the time to make your calls and use them.

npl8261
Posts: 33
Joined: Jun 2009

I am 43 and got diagnosed in Feb. with Stage 3C Uterine Cancer. It is rare for someone our age to get Uterine Cancer and because of this my doctor had me get Genetic Testing. This testing revealed a Gene that most likely caused my cancer. It is called the Lynch Syndrome.
As for books, one that I recently read that talks about cancer cells and nutrition is called ANTI CANCER- A New way of Life. I found this book very helpful and have started to incorporate some of it into my own diet.
Also, I had a radical hysterectomy in Feb.09, right after the diagnosis came through, have had 5 rounds of chemo (with one left) and will start Radiation sometime in August. I also had leg and back pain for quite some time. I hope this info helps you in some.
I wish you well.

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

I highly recommend this book also...found it very informative. The author is a physician who had cancer. (Author: David Servan-Schreiber, MD, PhD). His diet recommendations are based on sound research.

Karen

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

thanks for the info - I will get it. another good one is Carl Simonton's "Getting Well Again". This will help us get well and not to have a recurrence!!!!

Mary Ann

colleenmarlboro's picture
colleenmarlboro
Posts: 7
Joined: Jul 2009

How are you feeling? I had the surgery mid-July. Pathology reports came back that the cancer has spread into the lymph nodes and they are going to be doing 4-6 rounds of chemo once every three weeks for 18 weeks then 30 radiation treatments both internal and external. Sounds similar to what you're doing. Its scary...I am TERRIFIED about the chemo...I NEVER ever take pills of any sort...and am super sensitive if I do.

I'm more afraid of the treatments...than the cancer itself...does that sound weird? I have my first chemo treatment Sept 2nd.

How do you feel on chemo? I hate not knowing what to expect.

THANKS!

eme_lyn
Posts: 4
Joined: Mar 2010

hi! i am new here and this is the first time i started communication because i enjoyed reading questions and comments. since i found you here wherein we have same situation, same age. my surgery was last march 2009 , chemo started April until August. pelvic radiation for 28 days. my oncologist prescribe me Megace 160 mg per day. i am now taking this medicine for almost 3 months. Does anyone who read have an idea on this medicine. was it good or have bad side effects? my first quarterly check up was last month.

Anyway, i beleive best medicine if PRAYER. That's what i always did.

Katrinka123
Posts: 54
Joined: Jul 2009

It seems like I just had my diagnosis (coming up on a year Aug 7, 2008). I was 46 at the time and had so many of the same symptoms. Abnormal bleeding with no apparent problem except maybe my age, which progressed to crazy, heavy constand bleeding. My DC gave me my diagnosis.

I don't recall pains in my legs and groin area- tho I may have. I do remember the most horrible abdominal cramping as well as lower back pain.

Wish I had something profound to offer, just wanted to wish you well and hoping for the best possible news from your surgery!

-Kat

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

I think you should definitely ask for a PET scan. That would show the places you have cancer and let you know if it has traveled anywhere else. They should do that before the surgery for added information. I was told to stay away from tofu - and anything else that contains estrogen.

Deblittleton's picture
Deblittleton
Posts: 56
Joined: Feb 2009

I am 56 and have Stage 3 uterine cancer diagnosed in Jan. My Ct scan showed lit up areas around the uterus, spot on the liver and node in the left lower lobe of the lung. I was feaking out. A doctor friend of mine ordered a pet scan to decrease my anxiety and to get the real picture. On the pet scan nothing lit up except the uterus. Hysterectomy was done, 25 lymph nodes were negative for cancer, but a lymph channel to the vagina had a couple of suspicous cells.
So 6 treatments of chemo is done, with next to no side effects except side effects from a shot I received a day after treatment each time. Radiation has just started and so far so good.
I highly recommend a Pet Scan before surgery and to have that genetic testing regarding Lynch syndrome. If positive, your sisters, if you have any, should also be tested. Just had my post chemo Pet Scan this week so we will see.

colleenmarlboro's picture
colleenmarlboro
Posts: 7
Joined: Jul 2009

I had the surgery and am recovering great...but the cancer HAS spread to my lymph nodes unlike yourself. So, I'll begin my 6 treatments of chemo...which I am TERRIFIED of...then 30 radiation sessions both internal and external...how did you feel on chemo? They tell me I should cut my "beautiful hair" as I don't want to see it all falling out in clumps...

Hope you have continued success with your treatment,

Colleen

maryln3
Posts: 65
Joined: Jul 2009

ypu had hysterectomy why did they not do lymph node dissection..why wait and have to have another surgery

i thought lymphnoides are check AT TIME OF HYSTERECTOMY

california_artist's picture
california_artist
Posts: 857
Joined: Jan 2009

You asked about what to eat. Someone mentioned that this cancer, especially uterine tends to be estrogen dependent. One of the most important foods to stay away from is beef, due to all the hormones present.
Cancer also is a very heavy feeder, having much faster metabolism than most other cells. It thrives on sugar. Try to stay away from sugar and white carbs.
There have been studies proposing that the phytochemicals in concord grapes have anti-cancer properties. Because they are high in sugar content, a good bet is to eat seeded concord grapes, preferably organic, first thing in the morning. The reasoning being that, cancer cells will be in need of nourishment as you haven't eaten for a bit and will take in the sugar along with the anti-cancer properties of the grapes themselves. It's the same theory as used with a PET scan. With a PET, you are instructed not to eat anything for a number of hours prior to the test, and then are injected with a radioactive substance in a sugar solution. The cancer cells, having a much higher metabolism than the other body cells take up a greater amount of the radioactivity in its quest for the sugar, and that higher concentration is what the computer reads. A note on PET scans. A PET reads all cells with higher metabolic activity, because of this is you have any sort of infection, be sure to take care of that prior to the PET or a lymph node could appear metabolically active and give you a heart attack while you figure out how to determine if it’s cancer or something else.
Go online and look at some sites that talk about alkaline and acidic foods, there are charts out there. Cancer also thrives in an acidic environment, so try to keep your diet in the alkaline range, 80% alkaline and 20% acidic could be good place to start.

I am not a doctor or a nutritionist, but I have spent the last year researching everything I could regarding cancer, how it grows and how it dies.
You’ll find some interesting facts out there. Lemon, which you would think of as an acidic food, is changed to an alkaline in the body and has ph close to the end of the alkaline scale and so is good as an anti-cancer food.
There’s a ton of stuff out there. I have gone through more than six reams of paper printing out information, which I get in bed with at nigh, along with my ever so tasty glass of water with one tablespoon of raw organic apple cider vinegar (yuk) (vinegar is also highly alkaline in the body) and read and underline and circle in red those things I’ve never come across before.
I cannot tell you how sorry I am for your troubles, truly I can’t. I hope some of this helps.
Oh, and exercise. I know, blah, blah, blah. Take care.
As always, love and hope to us all,

Claudia
You or anyone else who would like, can call me for anything. I’m on central standard time, my number is 947-517-9417
As a further note, I would like to see the nutritionist associated with the oncologist’s office actually have anti-cancer diet recommendations rather that just eat what you can, or eat for strength. It’s really not so much about that. It’s more about eating to help your body slow and defeat the cancer cells. For the year prior to my troubles, I had determined that brown rice was the cat’s meow, and I loved it with cheese. I also love my morning cup of freshly ground and brewed French Roast coffee, I nearly did myself in with all the acidity in those foods. I didn’t know about the body and ph.
Maybe the health care system will change and help the patients with more than things they can do to us. Maybe they will tell us how to help ourselves while they’re helping us. We’ll just have to ---what?? Wait and see??? Maybe. Maybe not.
Anyone who knows things about diet can write of call me or email me claudiaallen27@yahoo.com.
I think, in the end, we all have to do what feels right for us.

california_artist's picture
california_artist
Posts: 857
Joined: Jan 2009

I did, but as you mentioned it did sorta look like a "fat cat", didn't want to make too many social comments--ah? way too late for that now I guess--so I have changed it to the painting of the little girl and her dog,I've titled Waiting. Most of us have someone waiting for us.

Lovely talking with you the other day, let me know how the doctor's appointment went. Glad the apple cider vinegar helped with your problem, I didn't know it would have that effect, but yippie anyway. Did you say your dog had passed on shortly after your diagnosis? He's a lovely looking friend. I hope I have remembered incorrectly. Don't overwork yourself.
As always, love and hope for us all,

Claudia

The hospital diet is the worst, especially for uterine cancer. Gee, let's feed the most likely, hormone dependant cancer patient some beef. Do they even try to think these things through? If you ran a hospital, what are some of the things you would do to improve their performance???

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

Claudia read this http://www.soilandhealth.org/02/0201hyglibcat/020122horne.21stcentury/020122toc.html
I did it last weekend and already reading it second time. Hopefully it will help others as well.
jana

ro_NJ
Posts: 11
Joined: Jul 2009

I, too, have just been diagnosed with stage 2 uterine/cervix cancer - and yes, pain in my left hip bone for over a year - and lower back on the left side - (funny since the tumor is on the right side).

As for diet - I think you need to eat what works best for you... everyone is different. I'm reading a book written by a cancer survivor and diets - this one particular book sited 6 different diets that work - for different people. You need to find what YOU are comfortable with... and most of all BELIEVE it works. I'll have to get the name of the book when I'm back home.

cherylduvall
Posts: 6
Joined: Aug 2009

Hi, my mom was diagnosed with stage IV pappilary serous Uterine cancer a few weeks ago. They did a debulking surgery and gave her a poor prognosis. Her CA-125 was 1470 befor surgery and 914 after. My sisters and I knew we had to do more and began to research. We are doing a regime of natural treatments that include B17, Essiac tea and Agaricus mushroom as well as taking suppliments and eating whole foods and taking Cell Food. So far, she has had positive results. She starts chemo this week but is staying very positive. Her swelling has completely gone away as well as constipation. The pain is more manageable. I would love to stay in touch. She is 63 and has been very active and healthy until this. I will also ad that SUGAR feeds cancer cells. Caffeine is not good either and try to stay away from anything with soy which acts like estrogen. (It can be hideden in so many things!)

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

Cheryl,

I'm intersted in more detail about the supplements, etc. ARe you following any particular protocal. Please give some resources. Mary Ann

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

Hi Hun

Im 29 and was told as of march 22nd i have the same cancer i will be having all removed from my body on april 16th its very much scary i can tell you that i have bad pains in the womb and ovry area along with bad lower back pains

MY CT scan came out normal and chest xray so i take it maybe it hasnt spreed all through i do not no that for sure until all is removed but the pains can hurt like some one is stabing me in the womb and overys some times it hurts to bend over even ,.

as for foods i my self am trying to find this out i do no chesse and milk can feed cancer cells but i am like you i dont want to feed the cancer cells and i dont fully no how to eat my doctor didnt take time to expilan nothing

so i turned to research and i can tell u all i researched scard me big time

but my husband has a aunt who is cancer free now 13 years shes given me alot of hope

im here for ya if u need to talk

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

So sorry you have received this diagnosis...

I too would suffer terrible pains but only for 1-2 hrs a day (not that that was not enough!)

Once surgery is over, you will be pain free from that....what a blessing!

Keep us posted on your progress and we will be here with you as you go through treatment.

Laurie

abxchange
Posts: 1
Joined: Dec 2010

This holistic site tells you what foods to avoid, etc.:

http://www.holistic-online.com/remedies/hrt/hrt_food_and_estrogen

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

http://www.holistic-online.com/Remedies/hrt/hrt_estrogen.htm

or maybe not, but first one is not working for me.

This is the one http://www.holistic-online.com/Remedies/hrt/hrt_food_and_estrogen.htm
I should finish reading, sorry.

Pamela T
Posts: 1
Joined: Sep 2012

Hi Colleen,

I haven't seen you post anything for a while and hope all is well. I am wondering if they associated your leg/groin pain with your endometrial cancer?

I started having really painful cramps about 1 year ago and more frequent periods. Lately I started having spotting in between, cramping after sex, leg & back pain, pelvic pain, bloating and indigestion. Wondering if these were your same symptoms?

I did have 2 ultrasounds which showed a thickened endo lining 15mm (even 2 days after just finishing my cycle). Then had a sono-hystegram and still 15mm (over the course of 4 months). Just had a biopsy and the results have not come back as yet....nervous that the biopsy will say negative but be wrong (I've seen on posts where women have said all their tests were negative but when they had a D&C or even Hysterectomy Stage 2 tumours were found). Of course, I'd rather get this out sooner than later and am frightened I have cancer but it won't be diagnosed properly. My mother had a hysterectomy at 33 yrs of age (34 yrs ago) and was told she was one step away from cancer of the womb.

Any input would be greatly appreciated.

All the best.
Pamela

txtrisha55's picture
txtrisha55
Posts: 429
Joined: Apr 2011

Glad you found this site as it has a lot of women going through Uterine Cancer at different stages. I would like to suggest that you move your comment and open a new discuss topic as this one is older starting back in 2009. Every lady on here has gone through some of the symptoms and almost all have the same fears. Good luck with your testing. I am over 1 year out from sugery and 6 rounds of chemo with no radiation for stage 3 Uterine cancer called MMMT (for short). Stay off the Internet searching for stuff as much is outdated using old data. This site is the best for up to date information from the ladies that have gone thorugh it or are going through it currently. I will add you to my prayer list. trish

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