Symptom review and advice for next steps

Ok as you mentioned no I, not a medical professional, but I feel your symptoms are worthy of further investigation. Pap smears will not usually diagnose uterine or ovarian cancer. My cancer wasn’t diagnosed until I was 63 after bleeding slight discharge and pain. But when I was going through menaupause I had some very heavy periods and clots. At the time I thought that was just part of the change but when I had my regular gyno appointment she told me if it happened again to call her and she would do a d and c. Of course it didn’t happen then again. That was in my 50s and Today I still wonder if that was the beginning of the cancer. Anyway I would push for a vaginal ultrasound at least and a d and c if possible. An endometrial biopsy could also be possible. I had no cancer in my family but you have, so I would emphasize that too. (I’m sure you have.) 

Hopefully others will chime in with their opinion. Please let us know how it goes .

Your symptoms are similar to mine (minus the breast part)

I think it is interesting what you said about execising and losing weight...I was exercising 5-7 days a week and burning around 3000 calories a day and not taking in nearly that many calories and I could not lose a pound. I went to the endo and she ran tests and toldme that while she truly believed there was something wrong with me it was not my thyroid or endocrine system. 

I had a full gyno exam in May of 2016 and a clear pap. My uterine cancer was diagnosed just before my 52nd birthday in Nov 2016. I went to my gyno because I was bleeding terribly and in a lot of pain and no energy...I felt horrible. On a whim she ran a CA125 and it turned out very very high so we did a vaginal U/S (it looked normal but enlarged uterus) and a CT (again just an enlarged uterus). It was through a D&C and hysteroscopy that she took biopsies and they turned out to be cancerous.

Find a doctor who will listen to you and run a CA125--it's not foolproof but a start. And get the vaginal U/S and hopefully a D&C to help with the bleeding and maybe give you some more answers...

good luck...

Before you go the extremist route of prophylactic hysterectomy and/or mastectomy please consider genetic testing and counseling. It would carry more weight with any doctor you would propose this to if you actually have gene mutations that put you at risk for these cancers along with the other risk factors you already have. I'd be surprised if you have active cancer now, but you could be heading in the direction of the hormonally driven version of uterine cancer and there are things that you can do to fend off that fate off besides surgery. Our lady parts are an important part of what holds everything in place down there and there are cardiovascular and orthopedic concerns with premature menopause, so you really want to be sure a need exists before you go the extreme route.

Here are all of the risk factors for developing hormone-based uterine cancer (endometrial adenocarcinoma) that I'm aware of:

1) Things that raise the body's long term exposure to excess estrogen:

     a.) onset of periods before age 12;

     b.) late menopause (55-60);

     c.) never pregnant;

     d.) never on birth control (you need to be on the pill for at least 2 years to get a protective benefit from it which lasts for about 10 years after you stop it);

     e.) obesity (fat cells make their own un-needed estrogen)

     f.) history of being treated for breast or ovarian cancer (especially if Tamoxifan was prescribed)

     g.) PCOS and/or diabetes (both cause increased acid levels in the body which stimulate cell mutations if not controlled adequately)

2.) Lynch Syndrome: an inherited set of genetic mutations that make one more vulnerable to a number of cancers, but especially uterine and colon cancers. It can only be detected by genetic testing.

3.) Age: risk for uterine cancer increases as menopause nears.

4.) History of endometrial hyperplasia

5.) History of pelvic radiation for another cancer

6.) High fat diet & lack of regular excercise.

Some things we have no control over, but just by being aware and alert to this cancer you are a step ahead of where a lot of us were when we were diagnosed. Use that to your benefit to keep learning and work on the things that you can control to prevent this disease. Especially try to adjust your diet to an anti-cancer/anti-estrogen diet that eliminates processed foods and incorporates organic to the extent possible. (A lot of pesticides are endocrine disruptors and not as innocuous as Monsanto would have us believe.)

There's a lot of information in books and on the Internet to help learn an anti-cancer diet. There are many different kinds of diets out there, but you will find a lot of overlap between them. The Mayo Clinic and other reputable sources strongly recommend a Mediterranean diet and that would be a good place to start. It will be good for your family as well as for yourself. It takes more effort to do this and we all realize it's not easy to do when you are still raising kids, but it will be worth any effort you put into. It's a learning process that takes time, so don't beat yourself up when you fail, but never stop working at it. Eventually it will become your new norm and you will be passing on good habits to your kids.

Do they have you checking your blood sugars daily because of your PCOS? Even if you are not on blood sugar controlling meds yet, this would be a good thing to be doing because it's really important to have your PCOS under good control, especially the metabolic component because it's such a major risk factor for this cancer. Always schedule those annual check-ups with your endocrinologist even when things are going ok. This is an important risk factor to stay on top of!

Hope some of this helps as you go through the process of finding out what is going on with your body. You are very smart to listen to it when it's talking to you like it is.

MeinMississippi said:

I think a D&C is probably the

I think a D&C is probably the way to go. I had a normal ultrasound and a normal CA-125. My cancer was found during the D&C. I was surprised that the ultrasound picked nothing up. I had a very thickened uterus and multiple polyps. I thought the heavy bleeding and clotting I had was due to pre- menopause. A few months prior to my diagnosis I was having abdominal pain. I had three ultrasounds in the ER and they kept telling me it was an ovarian cyst that was causing the pain. I finally broke down and went to gynecology. I was told I had PCOS and given a Depo-Provera shot.  Honestly the only reason I went back to see the gynecologist was because  ten days after the shot I got the worst period of my life.  I couldn't even leave the house. I knew that shouldn't be happening on birth control  He suggested a hysterectomy, but I said let's do the D&C first and it that doesn't work I'll consider the hysterectomy. It's probably good I went that route because I was sent to gynecologic oncology to address the cancer. I had the robotic hysterectomy and let me tell you it was the best decision I ever made. I don't know why I was holding on to keeping my uterus, ovaries, etc because my husband had had a vasectomy 20 years ago shortly after the birth of our second child. After surgery I was up and walking well the next day, and ready to go the next week. I had been having trouble with ovarian cysts for the longest time and was having periods with large clots for quite some time as well. Looking back I probably could have avoided cancer had I just gone through with the total hysterectomy. I hope everything goes well for you. Good luck!!

I was mostly responding to the "pull out the ute, take the ta-tas" comment, but agree that getting to the bottom of what's going on with herself right now is really important and a D & C would be very informative. Should no cancer be found, she can still use what's she's learned here to be proactive about reducing her future risk. Wish I had known this stuff before I was diagnosed.

Prayer Gal said:

You all have been great. If

You all have been great. If anyone else has any experiences they would like to share, that would be so helpful. Comparing stories helps in at least two ways: determining if what you're experiencing is similar to others (somewhat along the lines that "there is safety in numbers"), and seeing if there is any validity to what is being shared on medical websites . 

Honestly, I think that for some conditions there is a safety measure in place wherein each shares similar information, and that way they cover themselves. It's studies and journals that are most informative, with the details and "fine print" information being so helpful. 

In regards to the markers or higher propensity of cancer for women, I don't hit some of the markers, but have read them in multiple locations online. So, I have struggled with obesity (for the record, that would be the "medical definition" as I do run/jog on the treadmill often, getting up my heart rate, and do resistance exercises). I eat a keto diet because it is the ONLY diet that helps me at least maintain, if not lose, weight. This is vital because women with PCOS struggle so much with weight and almost no other factors are considered regarding a woman's overall health if they have both PCOS and obesity. None. I can have good blood pressure and great exercise, and because of the obesity the same lectures are doled out from doctors like you don't even try. It's incredibily insulting to my efforts.

I had normal onset of mensus about the age of 12/13. I don't know if I'm in preimenopause yet. 

There was one other point somone brought up and I forgot what it was, but I wanted to address it. If I remember it I'll return to post. In the meantime, I'm waiting for the 5th. 

-PG

I think I may have touched on a sore spot and that was very clumsy of me. I want to apologize for that. We usually say that this forum is a no apology zone, but I think this may be an exception to that rule. 

My daughter was recently diagnosed with PCOS and is very physically fit too, but is short and has a very stubborn spare tire around her waist that frustrates her efforts to no end. PCOS is a very tough risk factor to deal with.

On top of that, she had early onset menses and I was diagnosed during treatment with Lynch Syndrome which means she may have that working against her, too. But at least she knows now that she and her doctors need to watch her closely for this and colon cancer as time goes on. Prophylactic surgery may be something she will have to consider as she gets closer to menopause herself, so I took your off-the-cuff comment about it rather seriously.

I knew nothing about this cancer when I was diagnosed at age 59. My doctor, if she had any concerns when menopause just wasn't happening for me, kept them to herself. I tend to get up on my soapbox when it comes to sharing risk factors for this cancer because there is no screening test for it and because our primary doctors are not discussing it with us like they are supposed to do as we approach menopause. Knowledge is power when it comes to fending off or battling this beast and we try to share what we know to empower each other. I overstepped the bounds of what you needed to know, but in my defense I'm still getting to know you.

I'm really crossing my fingers, eyes, and toes for you that your symptoms to turn out to be easily dealt with. Even though most of us on this board never manage to meet in person, it's amazing how emotionally invested and connected with each other's well-being we are. Never doubt, even if we might sometimes say the wrong things, that we don't care about what you are going through. 

MAbound said:

I agree

I was mostly responding to the "pull out the ute, take the ta-tas" comment, but agree that getting to the bottom of what's going on with herself right now is really important and a D & C would be very informative. Should no cancer be found, she can still use what's she's learned here to be proactive about reducing her future risk. Wish I had known this stuff before I was diagnosed.

I totally agree with you too on not having prophylactic surgery..especially taking out the lady parts. My mother had everything collapse down there about ten years after her hysterectomy. She had to have a bladder sling and other procedures done and it almost killed her. She also had breast cancer and had to have a right mastectomy. Even with me knowing this and having endometrial cancer there's no way I'd do a prophylactic mastectomy. However, with all the problems I had with my ovaries and then as I got into my 40's having the heavy bleeding, I kind of wish I'd of had the hysterectomy. I also wish I would've known now what I didn't know then, but, you know, hindsight is 20/20 as they say. I find your posts to be very helpful and informative, and Im glad you're here to help us! 

Prayer Gal said:

I just want to get started

I just want to get started with the doc.  I am in so much pain today. Hips, groin, pelvis, back. And, breast pain. It's a double whammy over here and the anxiety is starting to creep in.

 

December 5th must feel so far away for you tonight. Waiting is never easy. 

Prayer Gal said:

Update from appointment

Okay, it was a little strange. I'm sort of annoyed with the intake, then review of the same information with the doctor. Annoying.

Right, so:

Dr. did give me a referral to a breast specialist for the concerns/issues there. She said that he has all the appropriate equipment in office and I can leave knowing what I have going on. Ultrasounds and other items sound great! Should get in before the end of the year which is promising. She also gave me a singular pill for yeast, stating that it may be that I have a yeast infection inside that is causing the itchy nipple(s) from the underside. interesting.

She wants me to take Evening Primrose and Vitamin E. I don't know why. Oh, and suggested a probiotic (note the yeast theory above).

Then, she is doing blood work, mostly for hormones. Also good. Although I recently had my panel done with no issues.

Secondly, even though I literally/technically and STILL on my period, began Dec. 1, she wants me to come in after my next one, at the end of it, for a saline ultrasound or something? Checking for pallups and/or endimetriosis. Then, she wanted to do a biopsy too. During that appointment. 

I told her no. I would rather have a D&C. 

What are your thoughts? I have read here repeatedly: they don't always catch aything with a biopsy because it is blind; the biospy hurts alot.I just want to skip that step. I think a D&C is better.

Also, I think she does that in office, too. But if not, I think she does it. She does not take OB patients so that's convenient. However, I also wonder at what point I should expect a Gyn ONc to review or conduct a procedure. Any time? Or, have to wait?

If she finds a pallup, does that go to pathology automatically? Or, would she schedule another appointment to remove it? 

I have many questions. Maybe I shoud start another thread?

PG

You do not state what location you are at, but could I assume that it is Texas, this is from your opening of Howdy!  I had a D n C which everything was sent to Pathology, which determined that I have a tumor in my uterus and additional polyps.  The pathology stand that the tumor was stage 1A very low grade but it also stated I had two microscopic cancer cells in 1 lymph node, well that bumped it up to stage 3C cancer because it was somewhere else outside of the uterus.  I was post menopause for 7 years no bleeding then one day the flood gates opened while I was a work.  I freaked but within 3 days I was at my gyn dr. We scheduled a Dnc for 2 weeks away then another week waiting for the results.  Cancer.  The weekend passed and I had gyn onc dr appt on that Monday and had hysterectomy on Friday.  6 rounds of chemo from May to August.  Now 6 years later NED.  If you are in the DFW area of Texas and need a third opinion, I go to and went to UTSW hospital and Cancer Center.  If you need or want it let me know and I will share.  Great gyn dr and great gyn onc dr.  Hope you find the answers you are looking for. trish