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Wait until there is vaginal bleeding?

DBBev
Posts: 5
Joined: Oct 2020

Hello,

 

I am so grateful to find this amazing community and am humbled by your strength and fellowship.  I do not have a diagnosis of endometrial cancer, but did have a concering transvaginal ultrasound result. I was wondering if anyone here could comment. 

I am 53 and postmenopausal. I have been feeling very bloated, but could be due to a whole plant-based diet I've adopted during the pandemic (!) Anyway, because of feeling bloated, my obgyn ordered an ultrasound. The uterus and ovaries appearwd normal.

The radiologist noted "borderline endometrial thickness [5 mm] with multiple endometrial cystic spaces".

I have no idea what a cystic space is.  The obgyn said it could indicate a polyp, but that most polyps are benign.  She also said since I haven't had vaginal bleeding we don't need to do anything right npw. If I have bleeding, then we would look further. 

 

Do you think it makes sense to wait until there is vaginal bleeding?  I guess the obgyn is thinking it might never progress to bleeding or cancer, so no need to do anything.

 

Many thanks for any thoughts

Dianne

Frances081920
Posts: 14
Joined: Aug 2020

I had an episode of spotting and saw a gyn. She referred me for endometrial biopsy. My endometrium was only .52 cm and I had a calcified polyp. The gyn said polyps are usually benign and was sure the biopsy would be negative. Unfortuneately,  I was diagnosed with papillary serous endometrial carcinoma, a very aggressive type of EC. I underwent a full hysterectomy with tubes, ovaries and omentectomy. I was stage 2, grade 3, I have now started chemo. If I had waited a few more months, it would have been stage 3 or worse. If there is any abnormality at all, especially a polyp, I would insist on an endometrial biopsy. If diagnosed early, the outcome is much better.

Donna Faye's picture
Donna Faye
Posts: 420
Joined: Jan 2017

Do not wait. Try and get tests, biopsy and ultrsound. I waited and regret it.

DBBev
Posts: 5
Joined: Oct 2020

Oh gosh - thank you both. I live near Boston, and I will call Dana Farber tomorrow to see if I can get an appointment for a diagnosis (?) I don't really know how it works, but I will tell them what is going on and see what they offer.

I will keep you posted - I cannot tell you how comforting it is to hear from you.  I don't really have anyone to talk to about this.

 

Thanks again,

Dianne

Forherself's picture
Forherself
Posts: 438
Joined: Jan 2019

Welcome.  We are fans of second opinions when there is doubt about a decision.  You might even request a visit with a gyne oncologist.  I don't know if it's available.  We are a group that would encourage proactive action.  1 in 10 biopsies turn out to show cancer.  But looking back when an early diagnosis is important, is nice to see you did everything you could.

zsazsa1
Posts: 504
Joined: Oct 2018

No!  I told my GYN about a new clear discharge, and she said that if there was no bleeding, it was fine.  It WASN'T fine!  It was a highly aggressive uterine cancer, and it took a year of discharge before there was blood.  I wish I hadn't listened to her.

5% of all women will have a GYN malignancy in their lifetime.  Post-menopausal lining I understand should be <3 mm.  If I were you, I'd have a biopsy done.  In fact, if I were you, I'd have a complete hysterectomy done, because biopsies can miss the cancer.  You could have a dilation and curretage done, which would be more likely to find anything that might be there.  But my views regarding, "When in doubt, take it out!" are considered extreme.  You have to realize, you're dealing with an entire cohort of women here who all wish that they'd had a hysterectomy done BEFORE they developed uterine cancer.

The one thing I would NOT do is wait!  At the very least, get a second opinion from a GYN oncologist.

els19
Posts: 69
Joined: Jun 2014

Don't wait! My first symtoms were bloating and digestive issues. I went through tests and ended up on proton inhibitors for acid reflux. By the time I had spotting and finally had a biopsy I was stage IIIc. Zsa Zsa gave excellent advise as in early stages sometimes nothing shows even on a biopsy. It's much better to be safe and catching these cancers early can make a huge difference. I hope it all turns out to be nothing but it's better to pursue it than to wait. Sending good thoughts and positive vibes your way!

 

BluebirdOne's picture
BluebirdOne
Posts: 358
Joined: Jul 2018

spots a few weeks apart, almost invisible. After the second one, 15 years after menopause, with zero bleeding, I was eventually dx with UPSC. Also, the cancer was in the polyps I did have as well as in the uterus. Waiting for overt symptoms to develop is what many women here were told to do, and then they were dx sometimes years later with stage 3 or 4. Those were my only smptoms and had I dismissed them or missed them I would have a much worse case. Most GO will not accept you as a patient without a dx of cancer, but you can try to be treated by a gyne with cancer experience at Dana Farber than at your local doc who may deliver babies more than dx cancer. My gynecologist did not see a lot of the lesser aggressive cancer, much less UPSC, and he did not prepare me for what might be coming. A second opinion by people who actually dx and treat cancer is the wise choice here. We sadly have too many heartbreaking stories here of women whose doctors dismissed their symptoms. Good luck to you.

Denise 

DBBev
Posts: 5
Joined: Oct 2020

Wow - when it doubt take it out! 

I REALLY appreciate your advice - I called Dana Farber, and they are looking into my case (they can access my records). They will then decide if they will see me.

It sounds like if they decline, I should move onto someone else rather than being content and going with the more pleasant conclusion of, "Oh this is really nothing and I am overreacting".

 

More soon and THANK YOU!

DBBev
Posts: 5
Joined: Oct 2020

Have an appointment with Michelle Davis at DF. She is not long out of training, but I am thankful to be seen (virtually) so quickly.

Thank you again and have a nice weekend!

Dianne

EZLiving66's picture
EZLiving66
Posts: 1436
Joined: Oct 2015

I am so glad you're being proactive. I was told by my new GP, "You get old" in her Communist accent. I had gone in complaining about feel bloated and just weird.  I found a different doctor who referred me to a gynecologist and sure enough was eventually diagnosed with UPSC. Five years later I'm still here because I got a second opinion. 

 

Love,

Eldri

Kaleena's picture
Kaleena
Posts: 2036
Joined: Nov 2009

Listen to your body.  If you feel you should do it.  The only symptom I had was bloating and lower back pain and down my left leg.  The paind was so bad at times.   I had an ultrasound which only showed a tilted uterus.  A colonoscopy which said it was fine.  I had a laproscopy which indicated I had endometriosis and that my uterus was very scarred.  They indicated I needed a hysterectomy. I wanted surgery right away but instead they put me on lupron for six months to ease the lesions to make the surgery easier for the doctor.  I had to wait one more month for the doctor for surgery.  The surgery went well all except for a knicked bladder which I had a catheter for a week.  When I went back to the doctor to removed catheter and for my check up I was told they found cancer.  I then had to go back into surgery a month later for staging.  I was staged at Grade 2, Stage 3A endometrial adenocarcinoma.  It was in my uterus, cervix and left ovary.

I had been seeking help for over a year before surgery.  I was told I was depressed by my PCP.  I also asked my Gyne for a scan.  He indicated it would only show endometrios.  If they did a scan, it probably would have saved me from a second surgery which I ended up getting an infection in my incision!

Sorry I go so long!   What Im trying to say be your own advocate!   

I wish you all the best.

Kathy

PS  I was 45 at the time.

MAbound
Posts: 1086
Joined: Jun 2016

The lesson here is that cancer is not a gyn's area of expertise and uterine cancer is not as easily diagnsosed as you'd think it would be. There is no accurate screening test for it, ultrasounds and biopsies can miss it and gyn's use a lot of time trying to first rule out other possibilities. The stories we read here about how we each finally reach our cancer diagnoses would almost be funny if only what we endure from procedures along the way and how it delays things wasn't the opposite of funny. It's not our gyns' faults, it's just that when it comes to cancer they don't have the training that a gyn-oncologist has, but they are the gatekeepers to getting to see a gyn-oncologist.

So yes, listen to your gut. Going to a relatively inexperienced gyn at Dana Farber is basically going to get you a gyn's 2nd opinion and not an opinion from a gyn oncologist. The value of going there is going to come from if she refers you to a gyn-oncologist who practices there and who is going to have the specific expertise to rule cancer in or out with certainty. The institution matters less than the doctor, but it's still a good place to be if your worst concerns prove true. You may have to have some more tests from the gyn, but if you are not satisfied that cancer is no longer a possibility, don't let anyone do a hysterectomy on you without referring you to a gyn-oncologist first.

 

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2803
Joined: Mar 2013

Ask lots of questions.  Take a note book or ask if someone can come with you to take notes, although that might be a challenge right now, and if someone can't come will they be ok with you recording your conversation.  This is good for any appointment you have should this be something more.  Information overload!  

Lots of good things already mentioned by those before me.  

Forherself's picture
Forherself
Posts: 438
Joined: Jan 2019

WE have all found we have to be our own advocate.  You can be confident that you did everything you could to look after yourself.  

dgrdalton's picture
dgrdalton
Posts: 130
Joined: Jun 2017

Glad you have decided to be proactive! I had such a tiny bit of bleeding that I thought it was a UTI, then a few weeks later the same thing. Finally I saw three pea sized blood clots in the toilet and immediately contacted my nurse practitioner. I was 65, 15 yrs postmenopause. It ended up being a polyp based uterine serous cancer that had barely invaded the myometrium. Later I did get a second opinion and am a strong believer in second opinions!!!

Keep us informed!

DBBev
Posts: 5
Joined: Oct 2020

Thank you all SO VERY MUCH!  You have given me a lot more to think about in terms of how to approach my appointment this week.

My regular gyn said she could possibly do a hystoscope "if I wanted". I am now thinking that since she is not an expert, I will just move on from her care to more of an expert.

After hearing from all of you, I'm thinking I should ask the DF gyn-onc (recently minted) doctor about going straight to a d/c. Do you think that is crazy?! That seems like the better procedure to obtain a definite diagnosis than the biopsy, based on your experiences.

It seems like I should have a game plan going into that appointment - I've written down the relevant history and all my "symptoms" that I can think of, including vaginal discharge over the summer that I didn't think anything of and no one has asked, but based on your experiences, that might be important. I will have a notebook with me. 

Thank you again.

I don't want to pry about your current statuses, but please know that I hope you are all well on your way to or well into your recovery. You are in my thoughts and prayers.

Dianne

cmb's picture
cmb
Posts: 554
Joined: Jan 2018

I've never been able to tolerate an endometrial biopsy. My first D&C/hysteroscopy about a year after menopause removed a benign polyp that was causing the vaginal bleeding at that time. The second D&C/hysteroscopy for vaginal bleeding years later showed that I had uterine cancer. So I'm personally a proponent of having the D&C/hysteroscopy since that procedure can deal with any benign conditions like polyps as well as more accurately identifyicancer, if any.

BluebirdOne's picture
BluebirdOne
Posts: 358
Joined: Jul 2018

also allows them to visually look at the tissues, and remove tissue that they want to have biopsied. I would seek out a doctor that performs this procedure a lot, rather than just an OBGYN who doesn't do many of them a year. Aren't there just gyne docs that are only gyne, not OB? A large medical center will have more experience than the local gyne. Mine was done under aenesthesia at a surgical center. 

Hysteroscopy is a procedure that allows your doctor to look inside your uterus in order to diagnose and treat causes of abnormal bleeding. Hysteroscopy is done using a hysteroscope, a thin, lighted tube that is inserted into the vagina to examine the cervix and inside of the uterus. An operative hysteroscopy can be used to remove polyps, fibroids and adhesions.

 

Denise 

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2803
Joined: Mar 2013

Yep, I'm with you cmb.  The endometrial biopsy was proving to painful so gyn scrapped it for the D&C.  I really don't know if the biopsy would have found the polyps, but I credit the change to the early catch of a bad cancer.  

pato58's picture
pato58
Posts: 118
Joined: Jun 2018

Save yourself trouble and ask for a hysteroscopy. I also had 5mm endometrial thickness.
You could also ask to go to a gyn-oncologist. Let us know:)
  

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