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endometrial/uterine cancer...have no clue what 2 do. nervous!

cindy318's picture
cindy318
Posts: 11
Joined: Sep 2007

Hi, i was just wondering about some questions i have. Im 28 and I was diagnosed with uterine/ endometrial cancer in jan 07, the onco i saw put me on a hormone (magace) magestrol for the last 7 months. My problem is that hes only here 1 day a week for 2 hrs and i havent really been able 2 talk 2 him, plus i had no clue what 2 ask the 3 times i have seen him. I have a limited insurance, a semi- state insurance actually. They want 2 do a full hysterectomy and take my lymp nodes, but i dont even know what stage i am now. I was stage 1 back in jan and i dont see him again till friday next week. will they reccomend chemo or radiation? Is it ushually aggressive? is there a way they can tell if it spread or not without doing a full hysterectomy? Also my biopsy results said that theres still cancer and has lost some of the diffrenciation, b 4 it was well/moderate and now its poorley. it may be needed 2 be treated more agressivley and that the tissue looks less like normal tissue. what would aggressivley treated be? I know these are a lot of questions and i have handled it really cool up until now and now im overwhelmed and feel scatter-brained. I was just wondering if theres anyone else out there that has been through this or knows what this means. Can cancer shrink and would be "less able 2 diffrencinciate between the tissue and cancer??" ive tried some alternative things along with the magace thats suppose 2 fight cancer, such as essiac tea, dee simmons ultimate living pack and amazon natural herbs. i feel like im on my own here just me and my mom tryin 2 fight this but dont know where 2 start. anyone that knows anything i would appreciate and info. and thank you 4 taking the time 2 read this...:(

kmygil's picture
kmygil
Posts: 829
Joined: Feb 2007

Dear Cindy,

I am so sorry you are dealing with this, especially at such a young age. Unfortunately, cancer doesn't discriminate.

Did your onc tell you why he went to hormone therapy first rather than a full hysterectomy right away? I'm no doctor, but with both my cancers, aggresive action has been better. I would suggest that you also seek a second opinion. I understand the insurance issues, but that is money. You're talking about your life.

With your early onset, you may also want to do genetic testing. My family was completely ignorant that we carried a gene mutation with carries colon, uterine, bladder, kidney and some brain cancers. I was dx'd w/colon cancer last year, and as soon as I was getting back to normal after surgery & chemo, I was dx'd with uterine cancer. So that is another suggestion. If you do have any of the gene mutations, I would also suggest that you get a colonoscopy as soon as you are healed from the hysterectomy. A lot of insurance companies will not pay for a colonoscopy until you are 50, but if family history indicates it, your doctor can cite medical necessity and they will pay for it.

The fact that you have gone from well differentiated cells to poorly differentiated cells makes me mad. There is no reason to let cancer progress like that if it has been diagnosed. Again, a second opionion may be what you need.

Please keep us posted and know that you are in all of our prayers.

Hugs,
Kirsten

cindy318's picture
cindy318
Posts: 11
Joined: Sep 2007

Thank You so much 4 taking time 2 read this, so if its poorley diffrenciated then that means its "bad" and NOT shrinking then right? and thats how my mom feels 2 bout the money, im back at home and not working now, my moms really tryin but just dont have it....thank you tho, i will see if he will go a genetic testing and we are tryin 2 find another onco thanks again so much cuz its kinda hard 2 find things out on ur own and were tryin lol thats how i found this site. im really grateful, thanks so much!

scarlet25
Posts: 12
Joined: Mar 2007

Dear Cindy,
I am sorry to read about your diagnosis. My mom was diagnosed with stage 4 uterine cancer in Feb 2007. It is stage 4 because it has travelled to her lungs. They do not want to do a hysterectomy because the cancer has already spread from the uterus to the pelvic bone, pelvic lymph node, tail bone and lungs. The risks for the hysterectomy are high. Instead, she had 2 rounds of chemo (carbo/taxol) in April, but that didn't shrink things as much as they were hoping. She had 10 radiation treatments to the uterus and pelvic/tail bones in April-May, and also has been taking megace 4x's daily since April 16. She had scans in June and in August and both showed the cancer is shrinking. The August scans showed the cancer is shrinking even more than in June. She too is taking essiac tea (and cat's claw tea too), drinking only alkaline water, having accupuncture weekly, taking vit D, fish oil and drinking pure pomegranite juice. She has changed her diet a little, but not too much. She has cut down on red meat, sugar, and white flour, and has completely cut out caffeine.
We are so happy that her cancer is shrinking. We think it is the megace, combined with the other things I mentioned. She is not in remission, but the closest thing to a remission, and yes, the megace is shrinking the cancer and keeping in from spreading. She will have more scans at the beginning of Oct. Hopefully, things will still be shrinking. She has a very positive attitude, and looks and feels great. She does tire easily.
My mom had biopsies, ct scans, bone scans, mri's and a PET scan when she was first diagnosed. All of these tests were helpful in showing just where the cancer had spread. She has uterine cancer, adenocarcinoma, well differentiated, grade 1. I would ask the oncologist what type of cancer, the grade, and if he could do any of these scans to show if the cancer has spread beyond the uterus. It might be helpful to write all of your questions before the appt so you will be prepared and not forget anything. Also, you may be able to fax or email the list of questions so he has them before your appt so he can have the answers ready for you. Maybe a family member or friend could accompany you to the appt and write all of the answers to your questions. It really is so overwhelming.
I'm sorry that you have to go through all of this. It is so difficult, and then to not know what to ask, and to trust that the doctor is doing everything. It can really be too much.
From what I am learning throughout my mom's illness, it is important that you stay on top of everything, and ask all of the questions you have because it is your life and you want to make sure you are getting the very best treatment. You are in my thoughts.

cindy318's picture
cindy318
Posts: 11
Joined: Sep 2007

I just wanted 2 say thanks a bunch. I am on the alkaline water, essiac tea, amazon herbs, and dee simmons ultimate living pack, i didnt know bout the cats claw tea or vit D, we are starting jucing this week and i dont eat red meat but nothing but raw veggies, a rife machine, and castro packs and pine oil...tryin anything that will help. Again i didnt know bout a couple things u listed and im sooooooooooooo grateful i found this site....thank u guys so much seriously from the bottom of my heart THANKS!!! i go back 2 him this friday w./ my mom and my aunts commin down from traverscity 2 go w/ us 2, so im praying God will do something ya know. realized since this, Gods the only thing i have 2 hold on 2, and meet wonderful ppl like u guys that are willing 2 take time and give info that u may have.......i know this is serious and i THANK both of u sooooooo much. cindy

Felixthecat
Posts: 37
Joined: Dec 2007

Endometrial Cancer Trial Drug Now Free
http://www.cancerwise.org/may_2005/display.cfm?id=1A29F5A7-F64B-4656-9FF3A93B491655CF&method=displayFull&color=green
Women with endometrial cancer will no longer have to pay for a drug being studied in a hormonal therapy clinical trial. Thanks to funding from a $10.4 million Specialized Program of Research Excellence (SPORE) grant, M. D. Anderson study investigators hope to recruit more women in a Phase II clinical trial for Mifepristone as a treatment for specific types of endometrial cancer. Before the SPORE funding became available from the National Cancer Institute, study participants had to pay $500 a month to cover the costs of the drug.The goal of the study is to determine the potential benefit of Mifepristone for recurrent or advanced endometrial cancer patients with tumors that are sensitive to estrogen (progesterone-receptor positive) or patients with low-grade endometrial stromal sarcoma (LGESS), a less common cancer that develops in the supporting connective tissue of the endometrium....(more info via link above).

Details of the Clinical Trial:
Mifepristone for Patients With Endometrial Cancer and LGESS
This study is currently recruiting participants. Verified by M.D. Anderson Cancer Center, July 2007
http://clinicaltrials.gov/ct2/show/NCT00505739?cond=%22Carcinoma%2C+Endometrioid%22&rank=3
Phase II Study of Mifepristone (RU-486) in the Treatment of PR Positive Advanced/Recurrent Endometrioid Adenocarcinoma and Low Grade Endometrial Stromal Sarcoma (LGESS)

tlva
Posts: 56
Joined: Nov 2005

Hi honey,
So sorry that you have all of this on your plate right now and not a lot of information, but you've come to a good source. At least you've got some girls who've been there, done that.

First of all, the only way to know how much cancer is there or how far it has progressed, is to have the surgery. Endometrial cancer can be graded...the abnormality of the cell... with a D&C or biopsy, but the Stage can only be determined once the utereus is removed,dissected and examined to determine the extent of the cancer. Endometrial caner is very slow growing, but does not always produce symptoms, so there is no way of knowing how long you may have had it.

I was 46 when I had a crazy pap at my annual check up and after several tests, cancer was confirmed. I had not one clue or symptom. I did have Grade 1...low abnormality...Stage 2b...because the cancer was also on my cervix... endometrial adenocarcinoma. I had a total hysterectomy with lymph node dissection, and 6 weeks of radiation therapy. I am fine now after almost 3 years!

Each woman is different so your treatment would be based on what is found after surgery. I know you are young and probably want children one day, but I would opt to adopt at this time and have the surgery.

Endometrial cancer is hard to examine for spread because it does not show up well on CT scans or X-rays. It is however HIGHLY TREATABLE with an overall survival rate of 85%. Do some research at the M.D. Anderson Cancer Center site...it is awesome. Make that doctor sit there until you have all of your information and taking some ammunition...your mom and aunt...is a terrific idea! You are smart to research and learn even though it is overwhelming. It helps to calm you down when learn what you are up against. Stick wih high profile sites...there is a lot of junk out there and some false promises of cures with herbs and supplements. Desparate people will pay for anything and there is always some greedy person out there on the other side of this to sell it to them!

Good luck with the doctor and let us know how we can help...we're on YOUR side!!! God bless you!!!

cindy318's picture
cindy318
Posts: 11
Joined: Sep 2007

Thank You, this is really helping, I am leaning on the side of surgery, cuz i have accepted not having my own childern, and im ok w/ that now. There are so many childern out there that dont have homes or someone 2 love them, im fine w/ that. The menopause im not so happy about but i can handle that 2. Radiation and chemo scares me tho, ive heard so many awful things bout this, like that it not only kills the bad cells but ALSO UR GOOD cells that fight off stuff. I go in friday, 2 days from now, and yes im taking ammo...lol not only my mom but my aunt as well. Theres so much information, i have no clue bout a lot of it and i just feel like screaming at the top of my lungs till i cant scream no more and going 2 sleep (which I will prob go 2 my room and do lol). Thank You 4 your time and info, its helping me 2 come 2 the decsion i need 2 make and making it not so hard! THANKS Mrs/Ms Tiva God Bless!!!!

tlva
Posts: 56
Joined: Nov 2005

Hi Cindy,

Another note about chemo or radiation...yes it does kill good and bad cells to fight the cancer if there is any left after the surgery. BUT it is only temporary...you do heal and the good cells renew themselves almost like fighting an infection with antibiotics.

And from my experience, that menopause thing is a lot of hype and women using it as an excuse for behavior or whatever. I have not had any problems and besides that, that's a maybe for side effects. Cancer is a known.

My only word would be to do whatever you can do now so that you have peace that you have done all you can and the rest is in God's hands. None of us are guaranteed tomorrow, but I'm not going without a fight!!!

Love you,
Tammy

cindy318's picture
cindy318
Posts: 11
Joined: Sep 2007

I just want 2 say THANK YOU Tammy and Kirsten. Yes I started 2 get scared, it seems like im down 2 the wire and have 2 make a decesion now, and this is serious so im scared of making the wrong one ya know. Your information and advice is exstremley appreciated and is helping me make the decesion that is best 4 me, the right one im praying. That has been the ONLY thing that has kept me sane and able 2 keep going on and not dwell on it is GOD and my MOM, without them I would have already lost my mind. It not good that you 2 have had 2 fight this, but im blessed that you have shared your information and exspierences with me, iys helping me make a decesion that WILL affect the rest of my life or lack of. I go back tomarrow...ickkkk but I know Gods in our corners......thank you again!!!!!! God Bless Tammy and Kirsten!!!!

Cindy

kmygil's picture
kmygil
Posts: 829
Joined: Feb 2007

Hi Cindy,

About your fear of chemo/radiation, it is completely natural. I did not have chemo or radiation with the uterine cancer, but I did have chemo with my colon cancer. While it was far from pleasant, it was TEMPORARY, and I can look forward to living a good life for some time yet. In fact, yesterday I was officially pronounced NED (no evidence of disease), so in 1 year 2 cancers were overcome. I say all this to encourage you to act aggressively as possible to rid yourself of your cancer. Keep the survivor mindset, surround yourself with positive people, and never forget the power of prayer!

Love,
Kirsten

kd2toyou's picture
kd2toyou
Posts: 11
Joined: Jun 2006

Have you had a blood test CA 125 yet?
You need to get that test done at least every 3 weeks.
It is a Tumor Marker. The numbers should go down, if all goes well.

Hugs
Karin

mjann
Posts: 4
Joined: Oct 2007

I have had endo cancer. You need a full hysterectomy with testing of lymph nodes all around -- don't wait. Make sure you get it, it can save your life. You need to contact a gynecological oncologist -- see if your state university has one that will hep you. Cancer is very serious and can't be fought with herbs and stuff alone - you need serious medical treatment. I have been through this for 27 months all together and I know what it is like to be overwhelmed; but please get very clear that you need a good oncological gynecologist to cut this cancer and re-stage you and figure out how to save your life. You are too young to lose it, so get very focused, please, and seek the expert help you need. Best to you in your path, mjann

Aprdawn's picture
Aprdawn
Posts: 1
Joined: Oct 2007

I too was diagnosed with endo cancer. I just celebrated my one year anniversary of being cancer free. It was hard. I was only 36 when I was diagnosed. I did want children. However,my life was more important at that moment. I had a radical hysterectomy,lymph nodes removed,and my appendix incase I needed chemo. I had never been in the hospital in my life. I was scared of the unknown. My lymph nodes from my groin and stomach area came back negative;thank God.
I do have to disagree with one ladies comment on the menopause. I was thrown into it like a slam dunk! It was horrible....hot flashes,emotions wacky,and forgetfulness. Maybe it depends on your age;I'm like everyone else we are all unique and individual.
Please,get a 2nd and even 3rd opinion,I did. I had a D&C as well that confirmed my diagnosis.
The operation would be your best defence against the cancer beast.
I wish you all the luck,strength,and peace.

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