New Cancer Diagnosis

Hi all, I am moving over from the post-op hysterectomy forum so have been on this site for a while. Now, however, I have new issues and new questions!

My uterus was removed on June 28 (this year) because I was diagnosed with Complex Atypical Hyperplasia. I had several different opinions and due to my age (44) I was told each time that a hysterectomy was necessary because of the cancer concerns. The surgery went smoothly and I'm recovering well at 3.5 weeks - the method was LAVH so I only have 4 tiny incisions in my belly without a lot of pain.

Unfortunately, I found out on Thursday that my biopsy results showed that I actually had Endometrioid Adenocarcinoma Grade 1, Stage 1b cancer in the lining of my uterus. So the hysterectomy was not for nothing. I had been upset for months prior to the surgery because I have never had children, and still actually hoped that some day I would.

My doctor told me that I need to have my ovaries removed because the tumor was so close to the uterin wall. The surgery is scheduled for next Tuesday, July 31. After that I will need radiation therapy throughout the month of August.

This all came as quite a shock because, while I always knew it was a possibility I truly never thought that I would have a cancer diagnosis. There is no cancer in my family, and I don't even have any close friends who have had cancer. Because I am 'young' they want to do some genetic testing to see if maybe I do have a gene and if so, my sister and nieces can also be tested.

I imagine having only my ovaries removed is going to be a lot less painful, traumatic than the hysterectomy I just went through. they are going through the same incisions so no new ones (just enlarging one). I only have to stay in the hospital for 2 days this time (I was there for 5 last time but live in Paris so due to French regulations they tend to keep you longer) and my doctor has said that I need to take at least 1 week off from work, I took 3 and only just returned to work last week after my hyst.

Has anyone else had to go through this? Two surgeries back to back? Or been diagnosed with cancer with no family history, etc? I'm trying to understand how this could have happened and how I could have avoided it. It's all so surreal.

I'm also a bit concerned about the removal of my ovaries and menopause...any advice would be greatly appreciated!!!

As always, I've been so grateful for this site...it has helped me through the past few months of H*ll and continues to be a great 'shoulder' and resource.

Thanks sisters!

Hello Paris, I am sorry you are going through this...I had my total hyst. in feb. but, I knew already going in that they had found cancer. So, they took everything and also my pelvic and aortic lymph nodes to check for spread. I am 1a grade 2. Are you seeing a gyn/onc? They deal with the cancer. So far I have no further treatment except being followed closely every 3 months for reoccurrence . The menopause symptoms began for me about a month after surgery. They are not fun, and I can not have estrogen due to the cancer. I am trying acupuncture.....not helping much yet. It's a long journey. But you can make it through this. My thoughts and prayers are with you. Stay strong"

I'm sorry you had the surprise diagnosis and now are facing more treatment. This cancer can be part of a syndrome but usually is not familial. It's thought to be related to high, unopposed estrogen, and there are some risk factors, but women with no risk factors get it, too. I know I'd never had GYN problems so I was shocked to get a GYN cancer. I did have 2 surgeries, too, the second was easier, but I was tired and hormonal. Hot flashes, insomnia, and mood changes were not my friend. Unlike others, my GYN oncologist thought HRT after treatment is OK. I am glad you didn't postpone your surgery longer, since that surprise cancer was there, but I know the feelings of loss even when it is cancer are not easy. It takes time to process the shock, disbelief, and grief. I hope we can help you through your treatments, we are here for you.

Hi - thank you both for your responses. My surgeon is a gyn/onc so is aware of what he's doing. I'm seeing the radiologist on Tuesday and he is going to put me in touch with the hormone specialist.

While necessary, none of this is fun! I have started looking for an English speaking therapist here in Paris who can help me through the months that come. I tend to be strong during a bad situation but then fold a few months later (post traumatic). My French is good but I express myself better in English!

Anyway, thanks for the support. I wish I could close my eyes and sleep through it all - waking up in September after I'm healed and ready to take on the world again! It has been a rough year...to say the least!

Paris -

I am sorry to hear of your diagnosis but glad they caught it now.

It's good you are looking for a therapist, mine was my godsend in getting me through all my stuff from my surger and diagnosis.

I totally understand wondering how you could have avoided all this, I did the same thing. It is part of the process but ultimately you want to be be careful of that because you can't change the past and it can prolong the trauma. It took me a long time to get through all of that.

As for the menopause I was older but not through menopuase. Initially it was tough but I had to be put on anti-depressants due to clinical depression being triggered by all this and they helped with they symptoms.

:senidng: as you fact this next part of your treatment.

HI Paris,
I'm sorry you had a cancer dx. It really is not fun. I hope your surgery goes really easy for you this week. I was diagnosed back in Jan. with Endo cancer Stage Ia Grade 2. I had positive pelvic wash and ended up doing 3 rounds of Chemo. I got through it ok and I hope that your radiation treatments go well for you and you have little or no side effects.

I wish you the best and send prayers for peace and healing!

Sorry to hear you have cancer. I'm surprised they're recommending radiation at stage 1b grade 1 without first doing a lymph node dissection to see if you need it. Can they remove some lymph nodes at the same time they remove your ovaries?

I had cancer - and nobody in my family has ever had it either. Since I am only 36 I did the genetic testing. It is a simple blood test. Mine came back negative so I still don't have an answer as to where my cancer came from. It was nice to be able to tell the females in my family that it wasn't genetic.

They took everything from me, so I am going through surgical menopause. It is no walk in the park, but not as bad as I had feared.

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Originally Posted by Paris2012 I'm trying to understand how this could have happened and how I could have avoided it. It's all so surreal.

Oh, sweetie. Cancer is no respecter of persons and there very well might have been no way to avoid it. We lowly humans like to delude ourselves that we are in the driver's seat when it comes to our lives. But, the truth is, many things are beyond our control. We all know folks who do everything "right" and still end up with disease X, etc. Then, there are others who throw caution to the wind and never so much as get the flu. As others have said, it's best not to spend too much precious energy on that but rather focus it on kicking this darn cancer to the curb. You can do this!

Hi - thanks for all of your kind words. I guess, unless I do end up with the gene, there is no way to know. One thing I'm very curious about is when it started. My symptoms got very bad in November/December (abdominal cramping and heavy bleeding) so that by January I knew something was really wrong). But I am just very curious as to when it actually started, and I don't know if there is any way to know that. My periods started to get heavy a while back but I didn't really worry much - I was diagnosed with anemia in October of last year because of the heavier periods.

So I just wonder...when did it all start and maybe I should have paid more attention. My PAPs were normal so I never thought to be checked for anything else. The only think I remember is having very high estrogen levels about 2 years ago when I had some fertility testing done. None of the doctors however, suggested that I check progesterone or suggested that I should keep an eye on it. They just said "this can happen, depends on the timing in your cycle". They had done an internal sonogram so had a good look at my uterus but did not notice anything abnormal at the time.

Not having a history of cancer in my family it never dawned on me to check anything else and figured it was all part of my body starting to change.

I know not to harp on it all - but it is what I think about. I guess between this diagnosis and still recovering from my hysterectomy less than 3 weeks ago sleep alludes me this days so my nights are spent thinking way too much!!

Looking forward to September...am going to also start looking into adoption. That is the only thing keeping me going at the moment!!