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Starting to freak out a bit Starting to freak out a bit

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  #1  
Unread 09-21-2011, 03:13 PM
Starting to freak out a bit

I am 46 and had an ablation 4 years ago. I have started randomly bleeding and cramping. Had the vaginal sonagram which showed a mass, and thickening of endometrial lining . Of course I googled it and cancer was pretty much the only thing I found. Doc said hysterectomy was called for (LSH) and asked about additional symptoms. After hearing that my normal back pain was different, and that I had stomach issues he ordered a CA125 which I know is not overly accurate but is all they have. It was above the normal range. My sister had aggressive breast cancer at my age. All of this combined, the decision is to remove the ovaries as well. He is a fabulous doctor, I'm fully confident with him. But I must say I am freaking out just a bit. I guess there is no chance I don't have at least pre-cancer, but has anyone else had a similar situation?

He said he would (cold/frozen???biopsy) everything while he was in there. I went from freaking out to fine to starting to freak out about waking up and learning that yes, i had both types of cancer and it has spread and i need chemo....
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  #2  
Unread 09-21-2011, 08:24 PM
Re: Starting to freak out a bit

I am so sorry you are dealing with this. You are right that the CA125 is not accurate. My understanding is that benign masses can release the CA125 protein the tests keys on. So, even if it is above normal that does not necessarily mean anything.

I had a large ovarian cyst and fibroids that caused me to have a TAH BSO. They did the pathology while I was in the OR, so it does not surprise me they are doing the same for you. My CA125 was normal, but another cancer screening was elevated. My pathology came back benign on all tissues, including the cyst.

Good luck to you. It sounds like you have a good doctor.

(((Hugs)))
  #3  
Unread 09-21-2011, 09:16 PM
Re: Starting to freak out a bit

Oh THANK YOU for you post!!!! I actually have some relief right now...
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  #4  
Unread 09-22-2011, 09:30 PM
Re: Starting to freak out a bit

Good, sweetie. I know this is tough. Post again, and as often as you need. That is what we are here for - that is what this site is all about.

:hugs2u:
  #5  
Unread 09-22-2011, 10:22 PM
Re: Starting to freak out a bit

During my hysterectomy, the doctor removed my ovaries.
One of the ovaries was causing me great pain on one side, i had a prolapsed uterus, and I was bleeding all of the time. Complex Atypical Hyperplasia cells found. Pre-cancer of the uterus, according to my doctor.
The doctor said that it was best that the ovaries came out, as I was 55.
When the left one came out, it was kind of strange.
Fibroids in and out of the left ovary and tube. A "borderline proliferating tumor" inside the same left ovary. I did some research, and found out that this tumor was not totally benign, but its behavior was benign most of the time. On the other hand, it was not cancerous. It was rare. The cells were not aggressive, but could change to carcinoma later.
I am glad that I got them out.
I don't like "rolling the dice.".
Yes, I could have used those ovaries, but the whole uterus and ovaries were causing me trouble.

I hope I made the right decision. At least it was my decision.
I trust my doctor. He is one of the best...

Everyone is different.
  #6  
Unread 09-23-2011, 07:09 AM
Re: Starting to freak out a bit

I am glad you had them out! No rolling the dice with your life,you know? What kind of side effects did/ do you have from the ovaries being gone? I am already having such bad hot flashes that I can't imagine them being worse.. But the whole emotional thing and weight gain scares me... I JUST lost 15 pounds on weight watchers. And look better than I have in years. I know, that is stupid to vanity to even be an issue. But i completely reversed diabetes years ago and was barely overweight and dont want that creeping back in. And the emotional stuff??? I am already taking lexapro... And sometimes Xanax.. Good Lord I will increase the drug manufacturer stock. Anyway, sorry to ramble. Didn't sleep well last night and am unnerved today. I appreciate y'all so much.
  #7  
Unread 09-23-2011, 07:55 AM
Re: Starting to freak out a bit

Hey CR... my story is a LOT like yours! I had the ablation 3 years ago and started cramping & spotting all the time with the lower back pain and just feeling miserable all the time. He didn't order the CA125 because they aren't accurate and will send everything off to pathology after surgery.

As for the weight it is not a stupid or vain to worry about that and you don't have to gain weight with a hyst! One of my really good girlfriends had the complete hyst with both ovaries taken out and she made the decision that as soon as she was able she was going to get fit and she did. She looks amazing at 48. I too started a weight loss/get fit program this year and have already lost 13 pounds and I refuse to let this hyst make me gain those & then some back.... In fact I want at least 5 more pounds gone before surgery! I will continue using my treadmill up until surgery and then get back on the fitness horse as soon as I can following it. Your surgery is two days before mine and I'll be more than happy to encourage you on your fitness journey. We can do this!!!
  #8  
Unread 09-23-2011, 08:31 AM
Re: Starting to freak out a bit

  Quote:
Originally Posted by crsimon View Post
I am glad you had them out! No rolling the dice with your life,you know? What kind of side effects did/ do you have from the ovaries being gone? I am already having such bad hot flashes that I can't imagine them being worse.. But the whole emotional thing and weight gain scares me... I JUST lost 15 pounds on weight watchers. And look better than I have in years. I know, that is stupid to vanity to even be an issue. But i completely reversed diabetes years ago and was barely overweight and dont want that creeping back in. And the emotional stuff??? I am already taking lexapro... And sometimes Xanax.. Good Lord I will increase the drug manufacturer stock. Anyway, sorry to ramble. Didn't sleep well last night and am unnerved today. I appreciate y'all so much.
You are right to be concerned.
Even though I "didn't want to roll the dice," I did just that, LOL. With all of my prior pain and bleeding, I had a bad feeling that something not too good was going on.

For, me, I realize that it was prophylactic. That I was preparing for the worst when possibly I didn't need to. Not all complex abnormal cells turn cancerous. Only approximately 30% of them do. That means that 70% does not turn to anything, that the body, learns to "clear" the bad cells on its own. I just thought that 30% was too high of a number for me to just ignore.

After finding the fibroids and my borderline tumor, I am glad that I got them out in one surgery...particularly since I am 55.
Not old by any means, but not young either.
I was already experiencing hot flashes, severe mood swings, severe bleeding (when menopause was supposed to take my periods away) for prolonged periods of time. Sometimes I thought of using a Depends diaper to catch all the bleeding. I had to use at least 2 overnight pads some days, and change them about 3-4 times a day. I would bleed through the pads, and it would be embarrassing at times.
Sex? what was that? It was more obligatory once I had experienced "the change."

At first I was vehemently opposed to the removal of both ovaries. I wanted to keep at least one. The doctor talked me out of it, so I figured that he was the gyn/oncologist (expert), so I agreed.

At first he thought this was cervical pre-cancer, but after the hysterectomy and the final pathology report, he changed it to uterine pre-cancer. I just didn't want any cancer, so I am glad that it all came out.

After the surgery, I was sore and cranky. After 6 weeks, it was time to have sex, but I had no libido. My DH did not excite me at all. In fact, John Stamos, the actor, did not even excite me.

I wanted HRT, but the doctor refused. We did not discuss this aspect before the surgery. I was not pleased. He said that I was "prone" to cancers, so he did not want to prescribe anything that would potentially increase that risk.

I didn't know what to do, so I started educating myself, and agreed that while HRT was considered great several decades ago, in the last 10 years or so the experts discovered that a decent percentage of the women that took them long term developed various cancers. Hence, many doctors hesitate to prescribe HRT. I decided to do without.

I decided to fight. I got more sleep, by: Not drinking coffee after 12 noon, eating less and more healthy. As I rested and got stronger: exercised more. I am walking 3-4 miles a day for 45-60 minutes a day, almost every day. I probably burn anywhere from 500-700 calories a day doing this. I just walk on the treadmill. I started out at 188 pounds before my surgery, and now I weigh 163. I am trying hard to get to 150, as I am large boned. I started out wearing a size 16 pants after my surgery, so now I am wearing a 10 or a 12. I want to wear and 8 or a 10. I am 5'6".

Hot flashes were really not a problem for me. I just do not know why. This may change in the future. I pray not.

As far as libido, I just grabbed my DH in the crotch every day, every time I saw him. This forced feelings for him for me.
Eventually, I wanted sex with him. He was also very smart.
He booked several weekend trips and a nice trip to Hawaii.
These were all very romantic hotels. Combined with Victoria's Secret nighties and my weight loss, this brought back my sexual drive. I think it is better it has been in the last decade.

As far as mood swings, I am in a really good mood most of the time. My DD has said: "Who are YOU, and who took my mother?" LOL. I guess experiencing natural menopause all those years had been tough on the family and I just didn't know it.

Sorry this is so long, but as far as menopause symptoms goes, the hysterectomy hasn't been too much of a problem.
The doctor has said that this is very rare. He said that I am his only patient that has experienced a positive change that he knows of. Most have severe night sweats, etc.

Physically, I have had granulation problems and difficulty healing. I think that the vaginal cuff has been a problem. My DH's penis keeps "running" into it, thereby causing some pain/and or discomfort. We have to figure this all out.

You will too.
Take care, and God bless you whatever you decide.
  #9  
Unread 09-23-2011, 10:18 AM
Re: Starting to freak out a bit

Yes we can do this! So good to hear your similar story. I had wanted to get at least 8 more pound off before surgery, but I'll get there. My amazing husband of 20 years is taking me to Paris the first week of October and my plan is to walk it off! And if I don't, no worries...I'll just have to continue to be diligent with my diet. Thanks for your post. Good luck!! I'll be in touch.
  #10  
Unread 09-23-2011, 02:47 PM
Re: Starting to freak out a bit

  Quote:
Originally Posted by crsimon View Post
Yes we can do this! So good to hear your similar story. I had wanted to get at least 8 more pound off before surgery, but I'll get there. My amazing husband of 20 years is taking me to Paris the first week of October and my plan is to walk it off! And if I don't, no worries...I'll just have to continue to be diligent with my diet. Thanks for your post. Good luck!! I'll be in touch.
crsimon,
Paris is such a great plan, right before your surgery.
Enjoy!
We are saving everyday (conserving money from household expenditures) so that we can go to Italy in April 2012.

My DH's 100% Italian, and we had never been there. We will be celebrating our 29th anniversary (30th early). I want to go just in case this cancer comes back and I have to do chemo and/or radiation.

I am also interested in how your reversed your diabetes, as I got a borderline (high/normal) A1c blood reading a few months ago. I was sufficiently scared because I had felt a slight tingling in two fingers of both hands and two toes of both feet.

What symptoms if any, did you have, and what worked for you to reverse the diabetes?

What blood readings did you have at the start and what are they now?
How long did it take you to get this under control?

Thank you for your story and your help.
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