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Newly Diagnosed, so many questions...

Anonymous user (not verified)

Hi all, 

I recently had a hysteroscope and biopsy, 6 months later than originally scheduled. i am 45, have very regular cycles but heavy bleeding. My gynecologist thought a fibroid could be the culprit, but found nothing. She was very surprised that my biopsy results came back showing complex atypical hyperplasia, FIGO grade 1. I have an appointment with an oncologist in a couple of weeks and, in the meantime, I have been spending much time on the internet looking for information. 

My first question to my gynecologist after receiving the biopsy report was, “is there any chance the results could be wrong and I don‘t have cancer?” the answer was no. My second question was, “will I absolutely have to have a hysterectomy?” The answer was yes, a total hysterectomy including ovaries. Thus, I will be immediately in menopause after the surgery.

I’ve had several recent health setbacks in the past year, after being diagnosed and treated for Hepatitis C (likely obtained from a blood transfusion when I was a kid for one of the several times I had issues from a blood disorder) last summer (SVR 9 months - yay!), I became severely anemic. It’s taken a long time but I’ve now finally gotten my iron levels back in the normal range with supplements (yay, again!), while I was having scans on my liver, the radiologist noted a mass in my kidney, which turned out to be trapped stones in a deformed part of my kidney (congenital). It hasn’t given me any problems yet, but it will require major surgery to remove them given the defect. I have also tested positive for rheumatoid arthritis and lupus, but was told these could be false positives since I don’t have any symptoms currently. 2.5 months ago, I had a bad breakout of pityriasus rosea (no big deal) which cleared up after 2 months (no scars - yay). Upon that clearing up, I came down with a mild case of ophthamalic shingles 3 weeks ago (still healing). I‘ve seen more doctors in the past year than I care to mention. ironically, my labs f on 2 weeks ago look the best they’ve been in over a year.

And now with the cancer Dx, I begin the next battle with my body. 

I have so many questions...

- Has anyone ever been diagnosed, had the hysterectomy and then found out the pathology was clear?

- Has anyone only had their uterus removed? If so, was recurrence a higher probability?

- Is chemo the normal protocol after hysterectomy? Has anyone had the surgery and not had to have chemo?

- Should I be cutting out all sugar/alcohol until my oncologist appointment? Or is moderation acceptable? Are there other things I should be avoiding?

Apologies for the long post. I have not informed friends or family yet, since I have very limited info at this point, so thanks for reading. 

Yours in the fight...

LA123's picture
LA123
Posts: 41
Joined: Oct 2015

Sorry to see you join this club, there are lots of great warrior ladies sharing in their experiences, their victories, their struggles, I am always inspired by them. On your questions, my understanding is that Complex Atypical Hyperplasia is considered pre-cancer, so your silver lining is that you would be nipping it in the bud. I was diagnosed (via biopsy) with Uterine Papillary Serous Carcinoma (UPSC) over three years ago, ended up having a radical hysterectomy, (uterus, ovaries, omentum, 39 lymph nodes, even the appendix). My results were clear (no cancer) thank God, but I don't regret having the operation, endometrial cancer can behave very aggressively, so it is better to be safe than sorry. Minimizing sugar and alcohol is always a good idea, even if cancer is no longer a concern. I hope everything turns out OK for you too, hang in there, and remember to take it one day at the time, it can be overwhelming. 

Lucy

Anonymous user (not verified)

Thanks Lucy, for reading and replying to my post. After rereading my mini novella (haha), I realize that I forgot to include that the path report indicated borderline edometriod adenocarcinoma. My gyn said there is no chance that it’s not cancer and I need a full hysterectomy. Soooo, now I wait another week until I see the gyn/onc To get this show on the road! Poor guy, he’s going to get super annoyed with all my questions! 

And you are right about the alcohol and sugar. While I don‘t drink that often, due to my fear of future liver cancer from the Hep C, I do have a serious sweet tooth that I need to get under control. 

Yours in the fight...

 

LisaPizza's picture
LisaPizza
Posts: 232
Joined: Feb 2018

I'm sorry you have to find us, but there's a great group here.

Your results are a little confusing, because endometrial hyperplasia with atypia is considered precancer, and is not normally described with a grade. So I'd recommend getting a copy of the pathology report and clarifying. 

They'll still recommend a hysterectomy. A significant percentage of cases of hyperplasia with atypia turn out to have cancer at surgery, due to sampling error or quality in the biopsy.

Definitely chemo is not always needed. Early stages at low grade typically do not.

 

 

Anonymous user (not verified)

Hi LisaPizza. 

I’m glad to have found this group. There are some seriously tough ladies here! Thank you for having me. 

My path report says, “Complex Atypical Hyperplasia with Prominent Squamous Morular Metaplasia, with Features Bordering on Endometriod Adenoarcenoma, FIGO Grade 1”.

When I asked my dr. about the “bordering” term, she said there is really no chance that it’s not cancer (as opposed to precancer). Either way, I’m preparing myself mentally for the hysterectomy. I‘m still holding on to a little hope that the gyn/onc will only take my uterus, even though my gyn said I’d have to have everything out. And of course, I’m praying for a low stage. 

MAbound
Posts: 874
Joined: Jun 2016

Enodmetrial adenocarcinoma is what many refer to as the "garden" variety of uterine cancer because it is more common than the more aggressive forms like UPSC, MMMT, clear cell, etc. It is the hormone driven form of uterine cancer and removing the ovaries along with the uterus removes the major producers of the hormones that feed this cancer. Fat cells also produce their own estrogen, so maintaining a healthy weight also helps in not feeding this cancer. It's not possible to eliminate sugar from ones diet completely as all food breaks down into either sugar, fat, or protein at the cellular level. Eliminating simple sugars that are in junk food, alcohol, and hidden in processed foods is a good idea, though. Get your sugars from fruits and vegetables that have other nutrients that keep you healthy and better able to fend off cancer.

Another thing you may want to discuss with your doctor is genetic testing. You seem to have a lot of health issues and question marks about some of them like the lupus and rheumatoid arthritis. This might help with those as well as test for things like the BRCA 1 & 2 genes and Lynch Syndrome that are risk factors for uterine, colon, ovarian, and other cancers. The fact that you have this borderline uterine cancer makes Lynch Syndrome a possibity. If you are able, survey your relatives to find out what cancers any of them have had or died from and share those histories with your doctor.  Family history helps in getting insurance to pay for the testing, otherwise you may have to consider paying for it out of pocket and that can run into a couple of thousand dollars. 

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

When I had my hysterectomy in November 2016, the surgical pathology report automatically checked for several factors, including microsatellite instability and estrogen sensitivity. My tumor was flagged microsatellite high (MSI-H), meaning I needed further testing for Lynch syndrome. When it came back, much to everyone's surprise, I was indeed Lynch positive despite no one in my family meeting any of the Amsterdam criteria. We have no gynecological cancers; no colon cancers, only one "young" cancer at age 39. My mother had a cancerous colon polyp at age 87 and died six years later of old age. That was it; nothing in my family history would indicate my Lynch status. To this day we can't figure it out. I say this not to be dire but to urge you to push for a comprehensive surgical pathology report up front, as it can save you headaches and insurance wrangles later.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2597
Joined: Mar 2013

NotToday, please don't apologize for the long post!  You gave so much information that it avoided us asking you a lot of questions.  I think we are all happy to hear you are working with a gyn/onc as well.  You really do want a specialist.  Keep in mind though, you can ask as many questions as you want - I remember my gyn onc prepared to spend as much time as I needed - because it is all about you.  

You do have a lot going on, and MAbound has a lot of goog things there.  Try not to get too far ahead of yourself.  This is a process, and it is best as one step at a time.  

Anonymous user (not verified)

Thank you, MAbound and derMaus! I will insist on genetic testing. My mom had breast cancer at 49. She believes it was due to the hormone therapy she was taking for menopause, but the more I read, I’m thinking we are estrogen sensitive perhaps. After I get my test results, and depending on what they indicate, I‘ll suggest my mom and sister get testing done as well.

NoTimeForCancer, thank you for the reassurance on asking the onc a lot of questions. I have a notebook started already!  

An another note, DH came home last night and showed me a lump on his neck. He had a begnign tumor removed from his parotid gland about 5 years ago (partial parotidectomy). I’m hopeful this is just a recurrence, and not something more sinister. Either way, we’ll both be having surgery in the next few months. I’m sure my insurance company has a big red flag on my folder! ;-) 

Double Whammy's picture
Double Whammy
Posts: 2827
Joined: Jun 2010

I had a similar diagnosis in 2010, but was already postmenopausal so losing my ovaries didn't matter to me.  I believe whenever there is cancer in your reproductive organs, they all gotta go just to be sure that it has not spread.  There's really no way to tell about the ovaries and fallopian tubes without pathology.  I also had breast cancer at the same time as the endometrial cancer, so I was a little freaky.  It is now 2018 and consider myself cancer free.  If your final pathology remains at Stage 1, Grade 1, you will not need chemo or radiation, just watching for 5 years.  Good luck to you.  See a gynecologic oncologist.  You're young and I bet there are many options today that were not available in 2010, but if you have cancer, I really think it's all gotta go..

Suzanne

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