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New here -Looking for support - from breast to uterus?

Livelovebelieve
Posts: 10
Joined: Sep 2014

Hi-

 

in 2007 I posted "new here" I'm breast cancer.org. It was such a great community. I learned so much and received, and gave in return unbelievable support.  Double mastectomy - DCIS 1, 3 tumors on one side and star clusters on other; necrosis. I was unbelievably lucky. I did not have time for reconstructive surgery but have been looking forward to getting some perhaps perky size a chest. that being said I  am the single parent of two now young adults with serious disabilities and cannot afford this. 

Bleeding last year 2 years post menopause. Did not pay attention to it at the time but did have a CA 125 of 150. Several repeat blood tests and was told that some women simply have a high baseline. 

Light bleeding has returned. Saw an OB/Gyn yesterday who has recommended a pelvic ultrasound. I know many of you are way beyond the diagnosis stage. I hope it is ok to post here. But I need support from somewhere. I am not terrifield at the prospect of cancer (or at least I don't feel that way now). I am, on the other had terrified of being incapacitated when I have two kids who need me day in day out. My son was hospitalized in Jan and my daughter from March -June. Son has significant mental health issues and developmental disabilities. My daughter has severe anorexia Nervosa, having been in multiple treatment centers, feeding tubes, full blown osteoporosis at 19 - I can keep going..

i want to be positive. But this is not Facebook where all is fine and dandy. I need a place to honestly say I am really mad. I don't want to be negative. But right now, even without a definitive diagnosis at all, I am so hating cancer. 

Not it a great first post.  Sorry. Just totally overwhelmed. 

ConnieSW
Posts: 1570
Joined: Jun 2012

I only have a minute as I have an appointment but I'll be back and the others will be here soon.

Livelovebelieve
Posts: 10
Joined: Sep 2014

Tears to my eyes in thanks for a response Connie...

Thank you; I hope your appointment goes well. 

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

What a great screen name.  I am sorry you are dealing with so much.  Feel free to vent here.  We don't know how you handle all that is going on in your life, but we  certainly understand you hating cancer.  You have dealt with it once, and so sorry you may be dealing with it again.   I hope that your ultasound comes back okay, but post menopausal bleeding is not usually good.  I never had any symptoms when I was diagnosed.  I will include you in my prayers.  Come back and vent some more if you feel like it.  In peace and caring.

Livelovebelieve
Posts: 10
Joined: Sep 2014

Thank you for the validation. I appreciate the kind words and support and look forward to learning. Again thank you. 

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Sorry you have to seek this site out, but as you will find out, the women (and sometimes men) on this site are there for you.   You will find that if you just want to vent, it is ok.  If you have questions, someone will respond (sometimes not right away, but they will).    

As I am sure you are aware, CA125 can be effected by many factors.   If you are having inflammation or you have an infection somewhere, that can rise the CA-125.  Just so you know, there are some women on this site with CA125 in the thousands.   However, I am glad you finally sought a physician since you are experiencing bleeding.

Anyway, we are here if you need to vent.

My best to you.

Kathy

Livelovebelieve
Posts: 10
Joined: Sep 2014

Hi-

I cannot even remember why they did a CA 125 on me. But it has been fairly steady, from 75 moving to 150. appreciate the warm welcome!

 

Alexandra's picture
Alexandra
Posts: 1309
Joined: Jul 2012

I'm here from ovarian cancer board.  It is all very scary but please try not to jump to sinister conclusions. I hope that there is a benign reason for your bleeding and it will get resolved soon.

1) Normal CA125 is 0 - 35. In my opinion CA125 = 150 can't be dismissed as "high baseline". You must have the CA125 test redone to see if there was an upward trend.

2) Pelvic ultrasound is not a good way to diagnose or rule out cancer. Transvaginal ultrasound is a little better. In my case in 2012 pelvic / abdominal ultrasound showed uterine erosion and a tiny cyst on one ovary. I didn't have any bleeding. Doctor's reaction was to repeat ultrasound it 3 months. 6 weeks later it was too late: CT scan found stage 3C ovarian cancer with multiple mets and ascites.

Insist on having CT scan done.

Good luck to you and your kids and best wishes

Livelovebelieve
Posts: 10
Joined: Sep 2014

I'm glad that you posted here... i mis spoke- I will be having a transvaginal USound. But it is valuable info to know to possible advocate for CT. With my breast cancer somehow I was able to get a bilateral MRI. Without it they would not have seen the star clusters on the left and the fact that. One of my tumors was close to the chest wall

I'm sorry to learn about the mets and ascites. I appreciate your taking time to provde support. this sounds like a good community. Even though I don't. Know for sure, I know a bit too much... Also recognizing that things can be tough and doable together. 

 

Thank you all. 

 

PS the Livelovebelieve comes fro the day that I found out about the breast cancer I walked through a mall to my car numbly and there facing me were zillions of manniquins with cute perky breasts. Well it was Breast Cancer month and while I had never looked closely during the month, now I was surrounded. I passed by the jewelry counter (macys) and there was a delicate silver band that said "Live Love Believe". Bought it that day and resolved to believe. Used it on the breast cancer.org page as my name!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2901
Joined: Mar 2013

Livelovebelieve, you have come to a good place.  You can vent, cry, laugh, ask questions, everything! It is safe here and you are among friends.

The ladies before me have given you good advice.  Bleeding after menopause is not a good sign and CA125 is really not a good indicator of having/not having cancer.  I don't mean to sound harsh, but want to make sure you push your doctor to get you all the tests you need.  Alexandra is right about a CT.  It is a very good diagnosis tool, and is often given pre-surgery so the surgeon knows what he is dealing with.   

You have a full plate my dear woman, but push for answers and keep us posted.  We are here to listen and share what we know.  Everyone is different, so what works for some may not work for others. 

 

Double Whammy's picture
Double Whammy
Posts: 2835
Joined: Jun 2010

. . . and at the same time no less . . .

First, breast cancer does not metastasize to the uterus.  Oh, I suppose it could, but it's doubtful.  However, the risk factors (primarily estrogen) for both are the same and they tell me it's not unusual for a woman to have both (as separate primary cancers) during the course of her lifetime.     Have you been taking Tamoxifen?  Tamoxifen is a well known risk factor for developing uterine cancer. 

The transvaginal ultrasound will tell your gynecologist about some things - like how thick the uterine stripe is, and if there are any obvious masses both within the uterus and ovaries.  The next step would be a biopsy or D & C depending on what the ultrasound shows.   We all know that all the diagnostic stuff is scarey, "they" use the term "rule out", I say they're looking for trouble!   The other term they seem to like to use is "given your history".  Given your history and your symptoms, please push if you don't feel you're getting the right tests.  Follow up even if you get an all clear.  Post menopausal bleeding is not normal.  

Good luck with your tests and please keep us posted.  Not all women's cancers are pink . . .

 

 

Livelovebelieve
Posts: 10
Joined: Sep 2014

Hi -

I like your comment about pink!

I did not think about mestatasizing - I just wondered if there was a correlation?  So sorry you have both at the same time - that is truly a double whammy!!!!  

No Tamoxifen  - that is good information about that though.  Your smile is powerful; thank you for posting and the support!

 

Livelovebelieve
Posts: 10
Joined: Sep 2014

Hi - Agree fullheartedly re. no time!!!!  Appreciate the wisdom so much - it is not harsh counsel at all.  

I was looking for a place where I could find others who are also pushing for answers - I have only been here one day and am very thankful!  I appreciate the recognition that we are all different too - patients know that; docs don't always, at least in my previous go-through with cancer.  Nice to meet you and I agree, no time:)  I hope that you are doing well.

It happened to Me's picture
It happened to Me
Posts: 206
Joined: Apr 2014

LiveLoveBelieve,  I, too, want to welcome you.  I'm also sorry that you have so much on your plate and now you have to add to that plate.  From your post, it sounds like you are a fighter.  That is great.  I hope you have a support system where you live whether it be family or friends.  This is one of the best discussion boards to be a part of.  I found this site half way through my chemo.  I have UPSC, a rare form or Uterine cancer.  My CA125 at time of diagnosis was 9.  Today, 8 months post chemo. it is 5.  CA125 is not a good marker.  I, only had spotting and bleeding as a symptom and I didn't think it was a symptom because I wasn't at menopause stage yet.  I thought I was going into menopause.  Well, guess not.  Anyway, don't let the doctors take a wait and see attitude.  I agree with the other ladies, bring in your support group to help care for your kids.  Stay connected to this board.  These ladies (and men) care.   We will get through this together.   Will begin praying for you and your situation.

Livelovebelieve
Posts: 10
Joined: Sep 2014

Hi; thank you for the welcome.  And the encouragement.

 

Can you tell me what UPSC stands for?  It sounds like you were younger than menopausal when you found out?  Thank you again; I am thinking about you:)

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

UPSC is Uterine Papillary Serous  Carcinoma.  They say it is a rare and aggressive type of Uterine cancer.  I am not so sure it is so rare with so many  others posting with UPSC.  They say ten per cent of Uterine Cancers are UPSC.  It acts very much like ovarian cancer.  So I follow both the  Uterine and Ovarian Boards on the csn site.  I hope you do not have this cancer, or any cancer.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2901
Joined: Mar 2013

Ro, thanks for bringing up the fact that UPSC and Ovarian ARE very similar, and like you, I read what those ladies are getting for treatment etc...on their board.   

A lot of women visit the different threads when it comes to the "Below the Belt" cancers. 

Like Ro, I don't know if "statistics" are getting updated all that much.  From things I have read there are a lot of women here who do not fit the statistics, younger, etc...again, this is a good place to ask questions.

Livelovebelieve
Posts: 10
Joined: Sep 2014

Learning lots. Now I kinda "get " more of the connections. Hope you are ok today. 

pinky104
Posts: 574
Joined: Feb 2013

My UPSC was initially found by an ultrasound.  I had a regular ultrasound.  The tech apparently saw something in the process, and she called in my OB/GYN, who decided to do a transvaginal ultrasound.  The physician found a large polyp and scheduled me for a D&C, promising me that polyps are almost always benign.  I'd had about 6 on my cervix throughout the years and one on my endometrium prior to this that were benign.  But this one wasn't.  I was diagnosed with UPSC after my D&C, referred to a gyn/onc, who did my surgery.  It turned out I was stage IVb.  The worst CA-125 I had during the whole process was only 94.  I'm four years and almost 4 months out from my surgery now, and my last CA-125 in June was 6.3.  A mass was found in May in my peritoneum, and I have to have another CT scan on Monday to see if it's grown or gone (there was a possibility that it was a fluid collection from having had my lymph nodes removed). I guess this just proves that the CA-125 results can be all over the place.  Mine was so low compared to so many other women's.  I had another CA-125 on Aug. 28 but won't know my results until I go to my gyn/onc on 9/15.  I feel fine, as good as you can feel at 65 years old.

Your having gotten cancer a second time is almost certainly due to having been exposed to so much stress in your life.  You've had a very hard road to follow, and I don't know how you've been able to handle it.  I have a friend who has two sons with serious problems, both grown now.  One had cerebral palsy and some mental problems and the second definitely had some mental problems which were never officially diagnosed.  She was able to find a group home for the one with cerebral palsy, and that made her life a lot simpler.  The second one joined the military, was kicked out, and had a child that he wouldn't let his mother even see.  Perhaps you can find a place that will do some respite care for you while you're under the weather.  Do you have insurance that might help out with something like this or maybe you can get help from Medicaid if you have that in your state.  If you have exorbitant medical bills, you might qualify for help when you wouldn't otherwise.  Good luck to you, and I hope things improve for you.  It's hard enough handling this on your own without having additional worries.    

Livelovebelieve
Posts: 10
Joined: Sep 2014

Pinky -

 

Thank you for sharing the information with me, and the encouragement.  I just asked about what UPSC means - but it does not sound too good.  I'm glad that you feel ok - and hope that the 9/15 visit is a positive one.  

Sorry to hear about your friends with kids issues.  Yep, stress certainly affects health.  One to one correspondence.  I try to stay above the fray as my kids "stuff" has always been here - but now that they are getting older, it is harder; you would think it would be the other way around.  I love them so much - and I am so tired, if that makes sense.  

My immediate family (parents are alive) are of the opinion that you have a problem, you brush it off and keep going.  With the breast cancer, that is what happened and actually it all worked out for the best.  No one was crying, or moaning - but a small side of me wanted a hug.  But in my family, it was all gone and done with.  The theory being that we cannot ever be a burden to each other.  My son's mental health issues - family say he should just get on with it; my daughter's anorexia - she should just eat.  I gain strength from friends outside of my parents; sister is in the UK and my brother has MS. But again, my families take on it is "it could be worse".

And that is true, in some ways.  I love that the name of this group is "survivors" - I consider myself one and am honored to be helped by others who see themselves that way too.  

But it can just suck.  The medical bills - right now I read that there is a new program (?) where your credit can be affected less?  My son's hospitalization in Jan was for 9 days - I had good co-payment for that one, and now it is the outpatient co-pay visits that are tough.  My daughter's inpatient stay was covered (weird with anorexia - look it up!) but her day treatment program was exorbitant - she sees a nutritionist and psychologist once a week, and has physical therapy 2 times a week.  She sees the medical doc and psychiatrist monthly. So the bills cannot be increased by me!

Take care - you sound strong!

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

You are dealing with so much as it is and now this situation with your symptoms and an elevated CA 125.  I hope that your ultrasound will show nothing as serious as cancer.  I had cancer symptoms one day only when I discovered 2 bright red blood spots on my underwear and almost ignored the symptoms. Fortunately, I didn't and had a Pap test and ultrasound within 2 weeks. Although rarely does this happen from a Pap test, mine showed that I likely had uterine cancer.  I had a hysterectomy, etc., and eventually learned that I had UPSC, stage 3A.  I am praying that you do not have cancer, let alone this aggressive and rare type.  You mentioned that your children have disabilities. Have you applied for the Medicaid Waiver program for your son, which provides many services to individuals with developmental disabilities including respite care?  Has the local community mental health center assisted you with the care of your daughter? Do your children collect Social Security benefits, have Medicaid and/or Medicare?  It must be very difficult for you to cope with your family's belief that your children can just simply change by willpower alone. If only life could be that easy! 

Wishing you the best, Cathy

bluesmama
Posts: 124
Joined: Aug 2014

I don't think you need any one of us to gently tell you, take it one day at a time. :) You sound like you have a lot on your plate. It sounds like you're in the middle of testing towards a diagnosis too. This is a good thing. Transvaginals are useful. Chances are you're fine. But even if you're not, we're still here.

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