Still in shock from diagnosis to surg... - SHARE Ovarian Can...

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Still in shock from diagnosis to surgery.

WarriorMandy profile image
14 Replies

I was diagnosed with Endometriod adenocarcinoma on 1/4/17.

That was the hardest appointment ever.

Felt like I was dreaming.

My Obgyn and his nurse sat around me to tell me and then of course said we are so sorry.

I am 37 with a past history of PCOS .

They made my 1st oncologists appointment for me. So within 1week - I go to the oncologist.

Of course they inform me i will need a total HYSTERECTOMY and it's normal procedure to do a Bilateral oopherectomy also due to cancer.

My case becomes more difficult due to 23 past surgeries. And a abdomen full of mesh.

So we schedule the OR for double time. To remove adhesions, the cancer the lymphnodes etc...

I felt well enough right after surgery to sit in chair and walk the halls. So i was released in 1 day.

Getting to go home to recover was very nice. I could rest. Instead of being poked and stuck every 2 hrs. Lol.

5 days after i returned home the oncologists office calls me with pathology report.

I was formally staged Uterine Cancer stage2 . With no lymphnodes involved.

So having the surgery was enough for that one.

But then she said be glad we diagnosed and removed the 1st cancer.

Because you also have a different type of cancer on your left ovary. Tumor size was 7.5cm

Granulosa cell tumor stage 1a. It's at an early stage but always comes back.

You are not cured and will need long-term follow up.

They don't have any info for me. Except keep scanned and Ca125 and inhibinB checks every 3 mths.

And when it wakes up again we do surgery again and again.

This sucks.

Has anyone else been thru this ??

I am getting a 2nd opinion.

Just in case another Dr has a better or different treatment option.

Why do I feel like i am betraying my 1st oncologist?

Help.

What are your thoughts on second opinions after surgery?

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WarriorMandy
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14 Replies
GwenHP profile image
GwenHP

Hi WarriorMandy, Please don't feel like you are betraying your oncologist. It is your right and very appropriate to get another opinion, especially for women with our types of cancer. We have to be our own best advocates. There are so many new treatments out there that one doctor can't keep up with them all. Doctors have different perspectives and experiences. You might see if there is one near you that has had experience specifically with granulosa cell tumors. Best wishes.

Spencer2016 profile image
Spencer2016 in reply toGwenHP

Mandy- a second opinion is not a betrayal! Get as many opinions and treatment options you need to be confident you are taking the best bath for you. Hopefully that will lead you to a plan you feel is best. Keep us posted and wish you all the best.

Warm regards,

Anne 🌸🌼🌺

deb1113 profile image
deb1113

What stage and grade is your Endometriod adenocarcinoma. That's usually one of the"better" Ovarian Cancers and is usually low grade. It's what I was treated for in ,2013 and have been NED ever since.

WarriorMandy profile image
WarriorMandy in reply todeb1113

The adenocarcinoma was the endometrial cancer. Dr said hes confident surgery took care of that one.

The 2nd cancer in my ovary was granulosa cell tumor stage1a .

deb1113 profile image
deb1113 in reply todeb1113

As far as it "always coming back...

When caught early, GCT of the ovary most often doesn't recur. If cancer does recur, it's usually 10 to 15 years after the initial treatment. That's why long-term follow-up is important. The long-term prognosis for GCT of the ovary is good. The five-year survival rate is 92 to 100 percent for survival rate is 92 to 100 percent for stage 1 disease in both the adult and juvenile types of GCT.

newsnetwork.mayoclinic.org/...

You will be fine.

Choski profile image
Choski

Hi

Lots for you to take in and never ever worry about getting a 2nd opinion.

Thought you may find this fact sheet useful

Fact sheet 12 Rare ovarian tumours

ovacome.org.uk/information/...

Factsheet Number 12

If this isn't a link then please write down the link and put it into your search engine!

I'm in the UK and post on a sister site OvaCome as well as this. OvaCome has a big website with lots of info and fact sheets and thought this may help you to compliment this site and forum.

Take care

Clare xx

faith1962 profile image
faith1962 in reply toChoski

You posting the fact sheet was very helpful to me . Thank You

Fearlessone profile image
Fearlessone in reply toChoski

Hi There,

Just checking in with you to see how you are doing. I just had chemo # 7 Taxol / carbo on Friday since my surgery on 2-16-17. I found out that my CA-125 had went up to

305.8 on 3/29/17 from 71.7 3/3/17 doc said this is normal from the very intense surgery which cause a lot of inflammation. I've been reading a lot of information from the U.K about ovarian cancer. I read a story on Walking Times.com a Canadian Cheryl Pearson beating stage 4 ovarian cancer with natural home remedy cannabis oil. I hope all is going well with your treatment. I wishing you the best. Take Care.

OneLittleStone profile image
OneLittleStone

I am currently undergoing treatment, and like so many of the women here understand the head spinning,trying to get a grip on things that you are going through.

Getting a second opinion when you are unsure about the treatment plan your oncologist has laid out is a good idea. Any doctor who is truly concerned with your health shouldn't have a problem with you seeking out more information. You survival is more important than anyone's ego, besides this isn't a betrayal ,it's a battle plan!

Honrath profile image
Honrath

Definitely a second opinion. Also my surgeon/oncologist removed everything even 10 lymph nodes which were benign. The idea being leave nothing that the tiny microcells wandering around looking for a home. I'm a Ovarian stage IIIB high grade serous epithelial cancer of all female parts. I'm starting chemo in 2 weeks and am in an on trial arm for pills that are inhibitors. Might only get the placebos but I'm part of a trial that will further well needed research. Keep your faith and I'll keep you in my prayers.

Honrath profile image
Honrath

I'm all for second opinion and any good doctor wouldn't mind at all

Fearlessone profile image
Fearlessone

Go for it. If you have enough time to get a second opinion do it. Have you tried a cancer treatment center? Like city of hope or cancer treatment center of America. Im only saying this because I wasnt able to go out of my network with Kaiser. Ive been through some hard knocks myself. But im putting up a good fight. I wish you the best. And remember only the strong will survive.

Honrath profile image
Honrath

You're not betraying anyone. Always get a second opinion! My gynecologist is also an oncologist. My doctor did surgery complete hysterectomy and had all 10 lymph nodes which were benign but the rest of my organs were stage IIIb Ovarian high grade serous epithelial cancer. I start chemo on the 30th of this month2 months after the surgery. Im positive that I'm going to be fine. That said go get as many options that makes you feel comfortable. I'm fortunate that I had everything taken out before chemo

Honrath profile image
Honrath

Second opinions are always good if you feel the need. Your current physician would welcome that if they have your best interests at heart. Couldn't hurt if YOU feel better to continue your journey. Best wishes

Honrath

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