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UPSC - misdiagnosed peri menopause after bleeding more than a year

trinoz
Posts: 6
Joined: Oct 2012

Hello Guys,
Have just been diagnosed with this quirky cancer after trying to get some attention from the medical profession for over a year. I stopped bleeding about 2 years ago and then started again after about 6 months with bad pain in my pelvis and down my legs. I was told by doctor after doctor not to worry I would be in menopause soon. I knew something was not right so I persevered. I had numerous hormone studies done and an vaginal ultrasound that showed 8mm thickening. It was noted as normal for pre-menopausal women. I had hormone studies from the same time that showed I was actually well in menopause and had been on previous reports as well(over a year). Seems no-one bothered to check - just assumed I was not in menopause because I was still bleeding - go figure.

I eventually decided to travel 3000 miles to a doctor I had seen 25 years ago who does long consults (3 hours) and rips into it like you imagine a doctor would (in your dreams). He spotted this hormonal issue - I cross referenced with the date of the ultrasound and got to a referral to a gyno (better late than never).

Things moved fast then and after a hysteroscopy and D&C I have been diagnosed with USPC. I don't have a staging yet. Seeing oncologist Oct25. What I have is endometrial carcinoma with areas of serous carcinoma differentiation - A high grade lesion. CT scan - suspected myometrial invasion - 'subtle haziness of the fat plane between posterior wall of uterus and adjacent bowel raises possibility of extrauterine local invasion - no distant metastatic spread (yeh!) CA125 - only 13 (double yeh!)Evidently the pap smear came back positive as well.

The diagnosis comes as I was moving from this isolated city back to a place where I could get medical and family support so the operation has been postponed until I move (10 days now).

I'm single, 52 and have 2 lovely doggies (border collie and a chihuahua). The effort of packing up house and moving is astronomical by itself. Now I have this to deal with and I know I'm pushing the limits of my energy resources. It's 5am here now and I have been waking with a start most mornings since I found out. I can't wait to see the Oncologist and find out exactly what all this means. After years of bouncing around the hospital and medical system I feel I am now in great hands with this doctor who spotted it and the new gyno oncologist. The doctor has instructed me to take 3000 IU Vit D up and through the procedure to support my body (I have auto-immune conditions as well). Vit D protect from cancer!! Get your levels checked.

Anyone have any idea what staging I have given the lab and CT report? I understand staging can't be gauged sometimes until after surgery.

I really want to inform women coming into menopause to not just assume that if you are bleeding it's a period. Get your levels checked and do the work yourself as it seems in my case no-one bothered to read the many hormone studies I had done. So much gets brushed off to 'coming into menopause'. We know our own bodies and the fear of being labelled a hypochondriac holds us back from seeking the truth we know innately.

My last day of work today and then packing, cleaning and moving.

One other thing I want to say is to keep your spirits up - laughter increases lymphocytes and NK killer cells that fight cancer. Get some comedies and surround yourself with positive people who love you :) My white blood are all below range.

Thanks for your time and look forward to sharing our unique UPSC journeys.

Trace.

debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

I'm not the one to answer, but saw you were up late and wanted to let you know someone was thinking about you. I have 1a,grade C UPSC uterine cancer. Some one will be here soon to tell you what all this means. It's almost impossible to stage it till the path. reports come back. Try and get some rest...we're all here to help. Also, if you use the search bar on the right side of the page, you can pull up a list of stagings and grades. Best, Debrajo

ConnieSW's picture
ConnieSW
Posts: 539
Joined: Jun 2012

I am so glad Debrajo responded to you so promptly and so well. I read your post last night and was so upset that you had been put off for for 1 1/2 years that I couldn't put together a coherent reply. I've calmed down and want to say how glad I am that you found this site so quickly. I, too, have (hopefully that is now had) UPSC 1a. I have learned more from the women on this site than I ever did from my drs. Collectively they are an encyclopedia of information and are always standing by to give their emotional support. So, get on with your fight. We are all in your corner, got your back, etc, etc.

trinoz
Posts: 6
Joined: Oct 2012

Firstly thanks for your support and thoughts. I appreciate it very much. I have a question - well many actually but what is bothering me is that the day after my D&C the lymph nodes on one side at the base of my skull swelled up and my neck was stiff and tender. 10 days later and the lump is still there and achy. I mentioned this to the Gyno who said to tell the onco gyno. Unfortunately I still have 2 weeks to wait. Anyone have something similar? I also have a lump in my upper thigh that is tender as well - lymph node I'm guessing but there is another small hard lump about 3 inches below it on the thigh. My CT didnt show lymph involvement but it's kind of weird. Maybe just my immune system working overtime.

I also want to know about CA125. How can mine be so low (13) when I clearly have a serious tumor. I have a friend who has prostrate cancer and no matter how extensive his cancer is, his PSA remains low. They dont use those numbers to gauge his progress for this reason. Does this ever happen with uterine cancer? Seems odd. I did read somewhere where even small changes in 'normal range' USPC is significant. At least I have a benchmark number for later reference.

Can't wait to get this out!!!

ConnieSW's picture
ConnieSW
Posts: 539
Joined: Jun 2012

Is not a good marker for everyone. My preop was 8.8. I am still working to understand all of this. Do you recall where you read that even a small change can be significant? Mine has been as high as 14 and fluctuates between those numbers. I am 2 months out of rx and my last one was right after. Appt coming up the end of this month.

trinoz
Posts: 6
Joined: Oct 2012

Hi there Connie,

The abstract can be found here.
http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=74&abstractID=48243 .

I think that's what this says. I'm only a patient, not a doctor, but I'm trying to get up to speed as best I can while I have this wait before surgery.

Blessings to you and yours,
Trace

seaturtle
Posts: 41
Joined: Aug 2012

Hello, frinoz,

I am relatively new here, too, but I am glad you found this site, as I was so glad to do.

Is there any way you can get in to see someone before two weeks? It sounds as if those things should be looked at, if only to relieve your anxiety.

You must be exhausted, with everything you've through. I hope things ease up for you - and keep posting here. It's really helped me.

trinoz
Posts: 6
Joined: Oct 2012

Hi Seaturtle,
I'm actually in Australia (hope there's no rules about that ;). This whole bizarre turn in life seems to have it's own momentum and at the moment-I'm surrounded by packing boxes and cleaning products as I'm moving house and heading South to be closer to better health services. I had already decided to do this before the diagnosis. The finding of cancer just ramped up the urgency and I'm leaving this coming Sunday. My gyno here who did the D&C felt the lumps and said to show them to the onco/gyno when I get there.

I've been bouncing around the medical system for about 3 years now trying to get a diagnosis for a long list of symptoms that appeared to be autoimmune. Anyone who has an autoimmune disorder will tell you it's a long road and we get very good at being a 'patient'. My last bloods were positive for either Lupus or Sjogrens Syndrome (or both). That treatment will have to wait but may also explain the lymph nodes - we'll see.

I've been feeling a little better emotionally as the days progress but there are bad days. Not knowing the stage and realizing how long this may have been there is a freak out at times. Funny thing is I now have a complete copy of my medical records and I found a reference from a neurologist back in April 2010 writing to my PCP (we call them general practitioners), stating that my blood tests show that "I am in menopause". Clearly ever doctor since that time, and there have been many, missed that critical point.

I don't even have the energy to be angry - maybe that will come later. The focus now is to get my body in match fitness for what's around the corner and to not dwell on what could have been. I just want other women to be aware that the usual 12 months without a period scenario to qualify as in menopause may not always apply.

I hope your journey is a smooth one Seaturtle and thanks for your reply.

ConnieSW's picture
ConnieSW
Posts: 539
Joined: Jun 2012

Thanks for the link, Trace. It's an interesting site.

You must be exhausted with the packing, etc. are you driving to your new home? Do you have to find a place to live? So much to cope with. I wish you the best.

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