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Met another uterine cancer patient

Double Whammy's picture
Double Whammy
Posts: 2301
Joined: Jun 2010

Am I the only one who thinks this disease is becoming more and more common?  I was visiting my daughter in Henderson, NV last week and was out for a walk.  I don't wear "hair" when I walk (it's too hot) so I had my ballcap on.  What hair I have is buzzed because there is no reason in the world to look like the crypt keeper IMHO.  I'm so used to seeing myself like this that I don't even think about it.  It's tidy afterall.  Anyway, a lady pulled into her garage and came out to talk to me.  She said "I'm bald, too" (she had on a lovely wig).  Of course I asked why.  Turns out she has recently been diagnosed with uterine cancer, and was undergoing chemotherapy.  Her cancer type is rare, a sarcoma.  

I realize I'm more "in tune" with women who have cancer these days, but it just seems that there is so much more of it!  Has anyone else encountered this?

Suzanne  

Kaleena's picture
Kaleena
Posts: 1159
Joined: Nov 2009

Hi Suzanne:

I know what you mean.  At first diagnosis, I felt like I was the only one.  Then more and more I hear people talking.  Its almost like (not quite) but like a cold people talk about.  I just think we are more in tune with it.  Also, people are more aware of checking for things too.  The only time I get frustrated is when a friend or someone I hear talking about symptoms they are having and they just ignore it or they say the doctor just said it was nothing to worry about.  

Kathy

cleo
Posts: 122
Joined: Sep 2009

I think that people are more open and wanting others to be more vigilant with their health as the initial signs are too often dismissed as 'age aches' or a strain.   I was car browsing and got chatting to a lady who informed me that she had just received good cancer news and was treating herself to a new car as she deserved it.    So....comparison of diagnosis/treatment etc. followed.

pinky104
Posts: 72
Joined: Feb 2013

When I was bald from chemo in 2010, I went on vacation in Maine.  I was winded, so I parked myself in front of a shop trying to catch my breath.  I had a wig, but it was uncomfortable and hot, so that day, I opted to wear a small kerchief instead.  A woman came along and told me that her daughter wore scarves like that because she'd lost her hair from chemo for breast cancer.  I explained that yes, I had cancer, too, but in a different site.

One day I was shopping in Walmart and I saw a woman who had bandages on her chest where she'd just had a port put in.  This was a week or two after I'd had mine put in, and I had to resist the temptation to walk up to her and say "me, too." 

Every time I see really short hair on someone, I want to ask if they just got over chemo or if they just like to wear their hair extra short.  There's a woman on The Voice right now that wears her hair that way, but I think hers is a fashion statement. 

In the hospital where I worked before I retired, 4 other employees from my department came down with various forms of cancer after I did, so we were all in tune with each other.  Before I came down with mine, a girl from another department located near mine came down with breast cancer.  She eventually went to work for our cancer center as a receptionist because she felt she could help other patients better after having had it herself.  I had stage IV cancer when I went in there, and she informed me that they had plenty of stage IV patients who had been coming in for years, so she was very reassuring. 

txtrisha55's picture
txtrisha55
Posts: 424
Joined: Apr 2011

In all my running around have not met anyone that had uterine cancer. I have met several with breast cancer. I have one at my work that was dx will ovarian cancer and had full hysterectomy at the same hospital and went through chemo there too. We call each other sisters.now.  one of my past bosses his wife went to the same hospital and treatment but for breast cancer. We all are NED for now.  It is funny how you do meet people everyone at my work ask about what symptoms I had, I tell them and if they are having issues let them know if in doubt get it checked out. If the dr blows you off get another dr till you get results. Trish 

Kaleena's picture
Kaleena
Posts: 1159
Joined: Nov 2009

Trish:

After reading your post, I thought about it and really I haven't run into anyone either that has endometrial cancer.   Mostly breast cancer or colon cancer.  A woman in a card club I was in had ovarian cancer.   Others lymphoma, pancreatic or brain.   My aunt had breast cancer which developed into bone cancer.  

A guy that comes to clean our office fish tank came in one day and I asked how he was doing and he indicated he was just diagnosed with early stage colon cancer and had to do treatment.   I told him I went through treatment and he was so surprised.  He said he never knew.  For some odd reason I think it made him feel better to know someone else went through treatment.  He is now back on his feet again.

 

Kathy 

Double Whammy's picture
Double Whammy
Posts: 2301
Joined: Jun 2010

I now have FOUR personal friends who  have had endometrial cancer since I was diagnosed four years ago.  THREE of them UPSC.  One other with adenocarcinoma.  And now the woman I met while visiting my daughter.  But really?  FOUR personal friends?  Maybe there's something in the water here in California . . . I only knew of one other woman many years ago who had "uterine cancer". 

I think it does help to talk to others who have gone through treatment, regardless of the type.  Just helps to know you got through it and you understand.

 

Suzanne

txtrisha55's picture
txtrisha55
Posts: 424
Joined: Apr 2011

That is why this site is so good and the people.that find it have the ones here  to help a lot of newbies. I have referred others to the discussion boards for.their type of cancer because it does help to know of others that have been through it and while they still may be fighting the fight they can give their journey to instill hope. Trish

Cuddlymom's picture
Cuddlymom
Posts: 6
Joined: Apr 2014

I haven't been diagnosed, but I'm worried about some symtoms that I have. For months I've had what I can only describe as a deep pressure low in my pelvis, like my uterus is just gonna fall out. It had stopped for awhile, but felt it again last night. Then I started bleeding, which I thought I was done with the whole menopause stuff. This morning it's much heavier than it has ever been, and really bright. Should I ask for more tests? and what should I ask for? I don't want to go to the Dr. and him blow it off as menopause, cuz what if it's not?  Maybe I'm just crazy. 

txtrisha55's picture
txtrisha55
Posts: 424
Joined: Apr 2011

I would ask for a CA125 blood test, maybe a sonogram, or a D and C with a hystoscope. That way the dr can see what is going on inside the uterus and the stuff can be sent to the pathologist for test.  At least that is what my female gynecologist did when I started heavy bleeding after menopause. My result was carcinoma sarcoma stage 3c1 uterine cancer in April 11. If your dr does not take it serious you can always go to a womans clinic for testing or find another dr. But get some kind of answer do not just let it go. Good luck. Trish

NoTimeForCancer's picture
NoTimeForCancer
Posts: 474
Joined: Mar 2013

I wouldn't say you should be worried, but this should be something to go and get checked out.  Finding this cancer is a little harder than others, there isn't an easy test, but if something is wrong it is better if you can find it early. 

The CA125 is what we all monitor, and it can / cannot be a good guide.  A low number makes a feel good but considering mine was 36 below my first chemo isn't all that.  Unless you have something to compare it to???  Hard to say if it is elevated.

They can do an endometrial biopsy or D&C.  My gyn went to do the endometrial biopsy, said this is going to be too painful so let's just do the D&C.  (She didn't even charge me for the office visit that day she nixed the biopsy!)  The D&C showed polyps, which I didn't think anything about at the time.  Ha! 

In this crazy day of benefits, the dr could probably say it is for "cause" so it is covered.  If it is serious see if they know a gynecological oncologist.  BUT WE ARE GETTING AHEAD OF OURSELVES.

See if he/she will do the CA125, endometrial biopsy, or D&C.  It is your life so don't be afraid to ask questions and push for answers.

Cuddlymom's picture
Cuddlymom
Posts: 6
Joined: Apr 2014

Thank you all for your comments. I did have an ultrasound done, then was referred to an OB/GYN. When I went to see that doctor they sent me for blood tests and scheduled a biopsy. The blood test results should be back. Not looking forward to the biopsy though. But, looking forward to answers.  I didn't notice that she didn't ask for the CA125 test until I was at the clinic to get my blood drawn. I'll ask about that today. 

On a side note, the original doctor they referred me to was so SLOW!! When I hadn't heard from them after I knew my insurance had authorized the visit, I told my primary doctor that I was just going to go the doctor who delivered my grandson! YESTERDAY, finally got a call from the other doctor to schedule a appointment. I told them NO THANKS, I've already been seen by another doctor and am having a biopsy tomorrow!  Then I let my primary doctor know. What bad service by that other doctor, meanwhile it had been 3 weeks since my referral. They tried to blame the insurance, and I promptly let them know, it was APPROVED the SAME DAY it was requested. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 474
Joined: Mar 2013

Suzanne, I just read that and I am surprised that you have four personal friends - THREE of them UPSC!!!!  While uterine cancer is more prevelant in the below the belt cancers it is still a smaller number than breast cancer! 

I know three women with triple negative breast cancer, so as "rare" as triple negative AND UPSC is, I am surprised of the number of agressive cancers like these. 

Cuddlymom's picture
Cuddlymom
Posts: 6
Joined: Apr 2014

I had my biopsy and will return to the doctor for the results on Friday, right before my daughters graduation from college.  The NP is the one who did my biopsy and she told me the OB/GYN is leaning towards a hysterectomy. Even though I knew that would be a possibility, I still cried. They did a blood test that encompasses the CA125, they did OVA1. She also said I have unilateral cysts on my ovaries. Trying not to worry. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 474
Joined: Mar 2013

Cuddlymom, I would recommend you try not to get too far ahead of yourself. Good for you for seeking out information but you can scare the crap out of yourself pretty fast too on what is on the world wide web.

There is two types of Uterine cancer, Type 1, which was described to me as "typical garden variety type".  I can honestly say I had never heard cancer described like that but surgery ususally takes care of it.  Type 2 are rare and definitely more agressive.  

Some of the Type 2 include: papillary serous (UPSC - uterine papillary serous cancer), Clear Cell, Malignant Mixed Muellerian tumors (MMT), and Leiomyosarcomas.  Misc uterine malignances (very rare) Rhabdomyosarcoma, and Neuroendocrine.

(No, I am not a doctor, reading from a document I got that was very good)

Please try to enjoy your family and wait to see what they say.  Find out what you are going to do and make a list of questions.  Maybe a hysterectomy will take care of all your problems, and as great as that would be, you have every right to be upset about that. 

mmfintx's picture
mmfintx
Posts: 17
Joined: May 2014

I am so thankful for you gals. In the educating myself mode...had a little emergency visit yesterday to my gyn for abnormal bleeding...I'm Almost 58, post menopausal. Had the sono and biopsy...now awaiting.  7 to 10 days!  Ohhhh Lordy!   And today...hum, have that symptom...that one too....now that I think about it all.  When I called yesterday because I found frank blood, I pressed the number for an appt...and fortunately got disconnected...then when I called back, the machine once again said, "Press 2 for abnormal bleeding"...I didn't the first time, heck, it's an OB/GYN place, and I certainly wasn't pregnant!  But the second time I though Heck YEAH, That's why I'm calling, and when I did, they got me in the next day, and I had the ultra sound, wall was too thick, and then the biopsy.  Had my pants down three times in one visit. That's a record!  Wish I would have asked her what she found during the physical exam.  I didn't think to. 

So glad for the comment about staying off the web. Although it was good ole Dr's Oz's site that encouraged an apt right away, while bleeding was active.  What I feel I've done is get on one of those moving walkways. I'm on it standing still and moving.

What I have gotten here is a frame work for vocabulary and what to do at visits...my hubby will definately go with me to the next one...and I just thank you. 

For all your courage and for being here. 

 

And too, if this posts twice...I'm new to this too!

Cuddlymom's picture
Cuddlymom
Posts: 6
Joined: Apr 2014

Got the results for my biopsy, which was great news. No bad cells in the uterus. I finally asked what the results were from my ultrasound. Thickening of the endo lining and a "cyst" on each ovary. They don't seem as concerned about those, but since my blood test levels were higher than is typical, recommending a radical hysterectomy. I was so hoping for the robotic one! They want to take everything out, which is fine, but they also want to take out a few lymph nodes too. For me the most devasting part is there isn't a doctor in town that does this surgery. I'll have to go 3 hours away. Frown I'm a Navy wife, and my husband is stationed across the country from me. I'm in California and he's in Florida.  Now I'm waiting for more info from my OB/GYN or the doctor who will do the surgery. 

Meanwhile, I'm having a pretty intense pressure/pain in my pelvis and it is very uncomfortable to sit at the dining room table. 

Thanks for all the info. I think it really helped me to know what to ask when I went back for my biopsy results and to be prepared, or as prepared as you can be. And if this isn't enough, 2 major dental appointments this week. Re-treat of a root canal, with sedation on Monday, and Wednesday having 2 teeth removed under IV sedation. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 474
Joined: Mar 2013

My radical, they like to call that 'complete' now - makes them feel better, hysterectomy was done by robot.  The oncologist who ok'd me to drive after two weeks saw my results and said, "You had a hysterectomy plus!"  My gyn onc took a TON of lymph samples.  In any case, you want someone who knows what they are doing so if it is 3 hours - take it!   Your safety and health are FIRST. 

Double Whammy's picture
Double Whammy
Posts: 2301
Joined: Jun 2010

I'm in California -northern California.  Do you have other family around?  You know you can't drive yourself, right?

What blood test?  CA 125?

Hope everything goes well and that you have this behind you soon.  I was obsessed about robotic surgery - which I had. I was scared to death about open surgery.   My gynecologic oncologist said to me "my goal for you is to have the best cancer surgery".  He would start with robotic but if he found he needed to have more access, the would switch to open. Basically, he nicely told me to shut up and stop telling him how to do his job.  My surgery went very well robotically, but I now know I would have been fine with a traditional open hysterectomy.  Others can support you on that.  The most important thing is that you have the type of surgery that is best for you and that you have a skilled surgeon.

I had a radical hysterectomy with lymph nodes removed.  All done robotically.  Maybe you'll have that too.  Depends on the surgeon and what s/he is most comfortable with.

Hugs,

Suzanne

Cuddlymom's picture
Cuddlymom
Posts: 6
Joined: Apr 2014

Sorry for not updating sooner. Had a complete hysterectomy the end of July. Ended up with the robotic surgery. The day of my surgery all the news was out about the "morcellation". I have no idea if they used that, but since I also had my cervix removed, thinking probably not. Everything seemed to go well, and recovery has been fairly easy.  Thankful for everyone here and the information and support. 

BTW, I'm in central California. My husband was home or the surgery and stayed for about a week. 

Blessings to everyone here.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 474
Joined: Mar 2013

Happy to hear from you again and glad to hear it went well! 

Henna's picture
Henna
Posts: 18
Joined: Jun 2014

Hi

I have met only one person with endometrial cancer for several decades ago. But on my workplace there has been very many cases of breast cancer, two cases of lung cancer and I know many, many who have told that their daughter or friend has cervical cancer. And a know one with ovarian cancer and have met two people with thyroid cancer. One family friend had bone cancer.

Now I  am confused myself because there is a serious supposition that I may have uterine cancer, I’ll get to know it after a couple of weeks, when I go to the hospital.

My gynegologist told me that the uterine cancer is the “best” of the womens cancers, so if it were possible to choose. Maybe she meant that a higher percentage of the patients is healed.

I’m afraid that this fact may lead to some kind of ignorance for example with waiting times to diagnosis and treatment. I use to read quite a much articles about health but I had never seen any warnings about how important it is to do ultrasound.

Henna

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