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Should I be worried - Update

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

Well, I guess I needed to be worried; biopsy came back really fast. It's endometrial adenocarcinoma, which is one of the high risk cancers associated with my mutant gene. It's back to surgery I go, but the good news is that there is no chemo. Wheeeee! I see the onc surgeon on Monday, and I guess things will go quickly after that. I will let you know how things progress. Meanwhile, keep the faith!
Kirsten

tlva
Posts: 56
Joined: Nov 2005

Hi Kirsten,
Well God bless you girl...haven't you had enough?
I am a 2 year endometrial cancer survivor and had a total hysterectomy and pelvic and internal radiation therapy.
I also went to genetics counseling to evaluate if I was at risk for colon or other cancers due to my family history of breast and ovarian cancer. I passed my colonoscopy and have checkups every 3 months between my radiation oncologist and my gyno oncologist. My cancer was Grade 1 Stage 2b because I had superficial stromal invasion. The rest was microscopic and I was given the option of radiation and decided to do whatever I had a shot at. I have not had any problems and feel great.
My prayers are with you and if you need someone to talk to, you know where to find me. Lots of love and hugs to you.
Tammy

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

Hi Tammy,

Congratulations on 2 years! You sound like you are a real survivor with a great attitude. Thank you so much for the support and information. I do have some questions for you.

What did your genetics counselor decide? Is it one of those fabulous mutant genes, or terrible, terrible coincidence? Also, what are the criteria for deciding if there should be radiation? What is stromal invasion, and where was the microscopic invasion? I have an appointment on the 18th with a gynecological oncologist/surgeon, and I have only a few sensible questions lined up; what should I be asking? Any info/questions would be greatly appreciated.

Thanks bunches,
Kirsten

tlva
Posts: 56
Joined: Nov 2005

Hi Kirsten,

Well I did not meet the Amsterdam Criteria for genetic testing because the cancers were sporadic even though they were all on my mother's side. She died of lung cancer; smoker; but the ovarian in my great aunt was most likely an age issue...she was in her late 70's and the breast cancer is my older sister, but she is cancer free now after almost 8 years. My grandfather(mothers side again) died of lung cancer, another second cousin of lung, all smokers, and her brother of lymphoma at 36. I made #7 for the family history! I did establish a very infromative family tree for my neices, nephews and daughters to help them with health care decisions down the line. I did have my colonoscopy early...at age 47...so thank God that's over for a few years...and I've had mammograms since I was 35 for lumpy , dense breasts. So I've always been on top of my health issues.

The damn cancer was a huge surprise! I had a crazy pap at my regular exam and had a doctor who just wouldn't let it go. After a hysteroscopy and d&c, the cancer was confirmed. I had 2 lesions that were 0.4 cm and the superficial stromal (body of the cervix) invasion. I was not a typical 2b because the amount of cancer was so small...microscopic.

The criteria for radiation depends on the stage and grade. Stage is determined on depth and location. Grade is on the degree of abnormality of the cell. You can research the stage/grade info on this site. Of course nothing can be determined until they complete the surgery and the pathology.

My radiologist happened to be my mother's doctor 13 years ago and he is an angel. He had recently lost his wife to cancer so he was really watching out for me. The radiation was recommended for my stage and I decided to have it even though I was not a textbook 2b.

Ask everything you can think of and write the questions down before you go and his/her answers. The information is overwhelming and hard to remember because there are so many variables. Do some research at the M.D. Anderson Cancer Center site, or here and ask about what you read if it doesn't make sense to you. My gyn/onc was at a national center before coming to my city so he is awesome and on top of everything. I would ask my doctors questions that I already had answers to and they all passed my little tests. That makes you feel great! YOU are in control so don't leave until YOU are happy!!!

Hope this helps!
Tammy

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

Wow, Tammy! That is some doctor you have! With lesions that small, it is super that he/she wouldn't let it go and followed through. We so often hear of some medical professionals pooh-poohing things. And you have been doing all the right things - regular screenings and monitoring everything. So many people don't.

Yes, getting that diagnosis is a huge surprise. Even though there was family history, somehow I never really related it to me (typical human denial), so when I was told about the first one I was shocked. Of course, after the genetic testing came back with the mutant gene, I made my sisters get tested and my older sister is carrying it - duh, she had endometrial cancer 2 1/2 years ago! My mother, her sister, her sister's son, their father, their father's sister all had colon cancer and it has killed them all, except for my aunt, who is dealing with her third go-round with cancer. I have other cousins dealing with bladder/kidney cancer - also from this gene. I think our family should stop breeding.

Anyway, back to the current cancer. Do they stage/grade uterine cancer differently from colon cancer? My colon cancer was Stage IIA--in the colon wall, but not through, and I had no positive nodes out of 29 taken. Very lucky!

So the radiation was recommended because there was stromal invasion. This is good information, because I have had cervical issues in the past (2 surgeries for severe dysplasia).

The gyn/onc to whom I have been referred seems to be very respected. I have researched him all over the internet, and more importantly, I have spoken with the nurses at my other 2 doctors and they all have good things to say about him. Nurses will tell you the truth, even if indirectly!

Tammy, thank you so much for your support, encouragement and information. I will go to the M D Anderson site and find out as much as I can before Monday. Look for an update!

Kirsten

tlva
Posts: 56
Joined: Nov 2005

Hi Kirsten,

I forgot to tell you that your ob/gyn should have been able to tell you the grade from the initial pathology. I knew going in what my grade was...1...low abnormality...95% of the cells appear normal.

They use a staging guide called FIGO for uterine cancer. The staging is different than other cancer staging procedures because it has more to due with location or spread rather than the size of the tumor as in other cancers. My sister freaked when I told her I was a stage 2b beacuse as related to breast cancer, that would have indicated something more advanced.

A typical 2b, as I am told and have seen illustrated on one of the sites, would normally indicate a uterus full of cancer and spread fully into the cervix. But I only had the 2 small lesions in the lower part of my uterus and the superficial stuff on the cervix. I did everything backwards!

This cancer normally starts up in the top of the uterus and goes out. Mine only went down with no mention of depth of invasion. That also determines stage. There is Stage 1-a,b,& c, stage 2-a&b, then stage 3-a&b, and so forth through stage 4. The grades are 1,2 & 3. Staging can only be completed after surgery when the uterus is removed and examined. They will know during surgery after looking at the uterus while you are under, whether more surgery might be necessary.

My doctor told me that they had a very hard time finding any evidence of cancer under gross examination while I was still on the table. That's why it was microscopic. It was only seen under the scope during pathology. I've said it a hundred times...the hand of God was on me! My nodes were also clear.

Get a copy of your pathology after your surgery in case you need a second opinion. It's gross to read but helpful at the same time in understanding exactly where you are.

I also forgot to tell you that the genetics counselor did think that there was a lung cancer gene that any of my family could have carried, but only becomes active when exposed to enviroment...smoking. However my great grandmother on moma's side, lived to be 97 and smoked!

All we can do is take care of ourselves and share that information with others and pray, pray, pray! We're leaving for a week's vacation in Maine tomorrow, so I'll miss you, but will keep you in my thoughts and prayers! Do know that endometrial cancer is highly treatable and has an overall survival rate of about 80-85%!

Godd luck with your appointment Monday!
Tammy

wyndcloud's picture
wyndcloud
Posts: 6
Joined: Jun 2007

Sorry your news was not good. Your posting and the postings of others regarding genetic testing has me interested. I had BC 10 years ago and now I have endometrial I think... results on Thrs. Can my daughter be genetically tested to see if she has the genes for these? Thanks, Carol

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

Hi Carol. Congratulations on 10 years! I will be praying for negative results on the endometrial. Please let me know what comes back.

As far as genetic testing, I'm not real clear about when it is a good idea. In my case there were red flags all over the family medical history, but I am the first to be tested. I don't know if you have family history. When my oncologist asked me if I minded having the genetic test done, he did say that it was super-expensive to run the one for my gene, but my insurance company covered it. It was about $2,000.00 for the test. I don't know if the assays run for BC/Endometrial are the same. When my older sister tested positive for the gene, they said her daughter should start her colonoscopies at age 25. In decreasing risk numbers, our mutant gene carries colon, endometrial, ovarian, bladder, kidney and some brain cancers. You'll note that BC is not mentioned in this list. Perhaps the gene problem for BC is different. Also, some people are just targeted by these evil things for no apparent reason. Speak with your oncologist and see if there is reason to run genetic tests. If he/she does think so, check your insurance first to see if it is covered. I really hope you are not carrying any wayward genes, and that your daughter will have a cancer-free life!

Don't forget to let me know what your results are on Thursday. I'll be thinking about you.

All the best,
Kirsten

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