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Really scared

Djen
Posts: 3
Joined: Jan 2020

Hello to everyone. I have been reading through many stories and trying to take in as much information as possible to get me through this very difficult time. A few years ago my husband had kidney cancer and I was able to find a lot of info from these discussion boards. I am 46 and have been very regular with periods up until last year when I started no miss a few for a few months but figured it was because I was coming close to menopause. I saw my dr a few times last year but nothing really came of it. So in December i starer spotting and this has been going on for about a month now.  So o went in to see my dr and he did a pelvic exam and said that my endometrium was 13mm thick and that is not normal. We have scheduled a d&c in order to do a biopsy. He also mentioned he would put in a Mirena coil I think he called it. Another thing that is worrying me is that since the ultrasound i have been bleeding quite a bit.

Anyway I have been freaking out a lot and am really worried. I have a 3.5 year old and i cant stop worrying.  I have read a lot about endo cancer and the symptoms and I seem to have them (thick endomitrium and spotting/bleeding) 

 

Has anyone had similar issues?

Thanks so much for your time. 

Forherself's picture
Forherself
Posts: 503
Joined: Jan 2019

I'm sorry you are having these issues, and you have come to a very good place.  You say you are still having irregular periods I believe.  And if that's true, your endometrial stripe can be thicker depending on where you are in your cycle.  I'm glad your gyne is being proactive and not ignoring your symptoms.  You have been online reading some scary stuff.  It can be scary.  Your young age is a good thing.  We can only talk about probabilities now, but the chances are you do not have cancer.  It is hard to remember that now.  I think about 1 in 10 endometrial biopsies are cancer.  So there is a 90% chance you do not have cancer.   Your young age makes it less likely.  If you are normal weight it is less likely.  If you took birth control pills it is less likely.   And IF it was cancer, there are several different kinds of cancer.  About 80% of endometrial cancers are "garden variety" endometrioid cancers.  And most of them are early.  Most of them don't need treatment.  We are here for you to answer questions, and listen.  We have all been through what you are experiencing.   It can be upsetting.   

janaes
Posts: 800
Joined: May 2016

Welcome to our board. I too am glad your doctor is being proactive about your symtoms. This can be a hard time when you dont have answers but it is good to beable to just live a day at a time until you know your results. You really might not have cancer. Im in my 40s also so being young is hard to be having to deal with this stuff but you can do it.

I wish you the best

Janae 

zsazsa1
Posts: 553
Joined: Oct 2018

Don't worry.  The odds are very, very low that you have endometrial cancer, and if you do (which is very unlikely), you have caught it very, very early, at the stage when it is entirely curable by hysterectomy.  BTW, my laparascopic hysterectomy was extremely easy to recover from.  So just try to distract yourself over the weekend by doing fun things with your child.  

That being said, because the hysterectomy is so easy to recover from, when discussing options with your GYN, consider the option that means you never have to worry about this again.  5% of women will have a GYN cancer at some point in their lives.  From my vantage point, it's a no-brainer.  I considered it, but didn't, and boy do I wish I had!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2878
Joined: Mar 2013

Djen, it is completely understandable to be terrified, but my advice would be to take a breath and see what really is going on first.  The D&C should give them a good look to see what is going on and then they can make a plan.  Come back when you get the results and let us know.  Lots of good women here who can share their experiences and lend an ear.  

Djen
Posts: 3
Joined: Jan 2020

Hello. again.

I'd like to first of all thank you all for your kindness, It really feels nice to feel like someone's there through this time.

I had the D&C this morning and had the mirena put   in too.  It's wasnt too bad  just a bit of discomfort but nothing painful.

Dr said he will call me when biopsy results are ready. So now it's a  waiting game.

I will try not to keep my mind off of  it for now.

Thanks agaiin to all of you. Your posts helped me a lot.

I am sending you all my positive thoughts and wishes.

Jenny

cmb's picture
cmb
Posts: 644
Joined: Jan 2018

Jenny, I'm glad your D&C is over and hope that you'll get the pathology results soon. We all know how difficult it is to wait to hear about what was found during the D&C.

CancerFree4ever's picture
CancerFree4ever
Posts: 11
Joined: Sep 2019

Hi Djen,

I am very very sorry you are going through this, and know how to pray for you, and simply let you in on my own experience.

I am older than you, but had been having strange symptoms for a while, ignoring them, and putting them off as late menopause. Bad idea! Wrong thing for any of us to do.

After I decided to go and have a physical with my GP, she became very concerned when I told her I was spotting, and had been for quite some time. She sent me to a Gynecologist, and she was awesome. First she did an Ultra Sound to understand the thickness of the lining in the uterus. And when that came back as 19 thick, she said it could very possibly be cancer. 

Stupid me........she wanted to do a biopsy, and I was humming and hahing around, because I was all packed up and about to move to Ireland for early retirement. It's my homeland, and many of my family and friends live there. I had also read awful things about a biopsy of this kind, on the internet. Then one day my dear friend strongly advised me to have the biopsy, she asked, "wouldn't you want to know what this is, before you head over to Ireland?" And with that I put on an appointment for the biopsy. When the results came back I had Endometrial Adenocarcinoma of the uteran lining. I was immediately scheduled with a wonderful Gyno Oncologist, and within a month I was in surgery. I had robotic Da Vinci surgery, and it was not until after that surgery the Oncologist was willing to stage the cancer after he heard the results of the pathology. It was contained in the uterus, stage 1, FIGO 1, with a cure rate of 90%.

The robotic surgery was amazing. No problems, a quarter of the time of recovery in comparison to standard surgery, and less risk. I would recommend it to others, and while I have no idea as far as future challenges from it, I have lived a normal, healthy life since it two years ago.

First I believe in: Making sure I had a really good, experiences gynecologist. That is key,if anyone has a significant thickening in the lining of their uterus that needs evaluating. I found out a biopsy is best. A biopsy can be done in the office of the gynecologist. I made sure the Gyno was experienced in this. The D & C is more painful, and someone cannot have it done in the Gyno's office.

My experience with the biopsy: I was scared, because I had read a bunch of stuff on the internet!!! In my case, I'd advise anyone.....do not believe most of what is read, both relating to biopsy, tests, diagnoses, and all the opinions others have placed on the internet. The comments etc are often from years back. Even a year makes a difference in treatment and success.  The first thing that has to be determined with a biopsy is whether or not someone has Dysplasia(pre-cancerous cells present) or Cancer if there is a significant thickening in the lining of the Uterus.

The day of my biopsy.....I was scared, but knew I should take two aleve, ibuprofen, or simple pain madication, not Tylenol. I took it about 20-30 minutes before the procedure. I knew I'd be waiting at least 15 mins in the office, so I took it upon arrival. I knew I should not be waiting over an hour or more before the procedure to take it. It needs time to work. After I went in to the procedure......there is no anisthetic to be had. Women shouldn't plan on it. The procedure is a lot like a PAP. Only the cirvix is dialated SOME and that enables the Dr to get in and take a very small sample of your lining. This was simply pressure, not the pain people talk about. But again, I had a really experienced Gynocologist, and that is what made the difference, as well as taking something, in the event it was painful. It was very very very bearable. If it wasn't, I would say so. I got up after that, and walked out the door, took a couple of aleve at the two hour mark since the last ones to be sure I was OK, and was fine after it all. I only felt like I had a little aching, but my gosh it was nothing in comparison to a period.

I had surgery, after we found out what the problem was. I made sure, about four hours after the surgery, I was up trying to walk the halls to keep from any possibility of clotting. That led to a good recovery. I was only in hospital one night. For the first four nights I couldn't get comfortable to sleep, because of incisions.....that's pretty normal. I never took heavy pain killers that the Dr prescribed. I did take Aleve as the bottle directs, and was just fine.

One comment........While I did have 3 month then 6 month checkups with my Oncologist for 2 years, I would advise all women to ask for a PETscan at around their 3-6 month mark, after surgery. WHY? Because I needed to make sure they got all the cancer, and that cannot be seen always in a vaginal check up/pap. The general guidelines are, if someone has stage 1 FIGO 1, there is no need for tests after they got all the cancer. Whereas for other staging, there is stronger follow-up testing.

For me, in September, 2019 during my 2 year examination, they discovered I had the same Endometrial cancer, down in my vagina. Thankfully it was contained, but I truly wonder if it came from when the Oncologist took everything out through that area, and there was a spill. If I had not been having regualr required checkups, it could have spread. But, it was found. It is a very slow growing cancer, and for this reason it was a good thing. I still wonder if I should have had a Petscan after some months after surgery, even though normal guidelines for the Oncologists say it's not needed.

This recurrence that was a shock to all, led to Radiation of the pelvic area, external, and three Brachytherapy treatments, which I finished just over two weeks ago. I will have a Petscan in March, and that's when I will find out the success of the treatment, and make sure there is no concern elsewhere.

I share these things so that anyone reading my story makes sure they find themselves in experienced, speedy care, and I have learned some things through my own experience.

I would say to any who is spotting abnormally or if your body just doesn't feel well or is telling you there's just something wrong in your female areas, or in your organs:

1. It was important to find a really good Gynocologist, and not put it off.

2. I didn't but almost put off having testing or a biopsy. Ultra Sounds are easy, CT Scans are not difficult, and as far as a biopsy....... It is nothing like what we read on the internet. It takes about a minute or two of some aching discomfort, nothing as close as period aches at all, and then you will have results a day or two after.

3. I am glad I did not subject myself to a D&C. It was not necessary, when a biopsy is done in the Gyno office, and quick, and I went straight back to work or whatever after it.

4. I almost let fear keep me from getting any kind of spotting, lump, or a strange symptom diagnosed. It's a known fact that metistatic cancer from this  and other kinds of cancer, has a lot to do with avoiding immediate health assessment. Cancer can be cured, I found out I am half the answer.

5. They say to Lose weight, eat healthy, stop smoking, watch your alcohol intake, get good sleep is important. All these helped me, even in the process of diagnoses, surgery, treatment and beyond......if someone has to go through all of these.

6. It was important to me, when I was diagnosed with cancer, to find a good support group. Sure, I got support from people facing the same challenge, but to take the focus off of only concentrating on cancer, having other POSITIVE people in my life, who pray, and who are upbeat, is also important. Attitude has a lot to do with my recovery and healing. Cancer can bring with it the doom and gloom of facing an impossible situation. The very word brings paralysis and fear. The very thought someone MAY have cancer, is frightening. BUT, my attitude, and determination has certainly been key to getting well, cancer or not. 

7. God is amazing, He has brought me through so much, and I know this life is not over until He says so. Talking to Him about my fears, finding people who will surround me with prayer, and reminding myself that while cancer seems to affect many lives, I choose to also focus on the fact that there are many today who are in remission or cured because of speedy, experienced care. 

I hope this help you Djen, and many others. 

 

 

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

I totally disagree with having an endometrial biopsy vs D&C.  I had both. The biopsy was incredibly painful and the result was the doctor couldn't get enough tissue to determine anything. You are under general anethesia for a D&C and there's virtually no recovery period after. I strongly encourage D&C vs biopsy for an accurate diagnosis. 

JillAndrea's picture
JillAndrea
Posts: 30
Joined: Jan 2020

I agree!   I had a biopsy, which was brief but painful, but it missed the cancer.  Thank goodness my dr also requested the D&C. It was an outpatient surgical procedure, but under anesthesia you feel nothing.  A little achy for the next day or two.  And it found my cancer.

cmb's picture
cmb
Posts: 644
Joined: Jan 2018

CancerFree4ever,

Thank you for sharing your story since it reminds everyone that even an early stage, "common" type of uterine cancer can still recur and that follow up exams are important for everyone, not just those with advanced stages or more aggressive forms of cancer.

I hope that you were able to move forward with your retirement to Ireland. Returning home to spend more time with family and friends sounds like a great plan.

Like CheeseQueen, I have a different view on biopsies versus D&Cs, (see my post below), but the benefit of this site is that is allows us to share our experiences, the range of which can help others as they go through treatment and recovery.

Since your post contains such a good summary of your cancer journey, I'd like to suggest that you copy and paste this into your profile (the page that appears when someone clicks on your user name). It will make this information available to any member (and only members) later so that you don't have to recap it again and again.

cmb's picture
cmb
Posts: 644
Joined: Jan 2018

We're all different and what works for some, doesn't for others. I've had three attempts at an endometrial biopsy, none of which could be completed because the pain was excruciating. I liken it to someone shoving an ice pick in me! And I'm not wimpy about pain normally.

The first was years ago right after menopause, when my vaginal bleeding turned out to be a benign uterine polyp. The other two were done prior to my cancer diagnosis. All three biopsies were attempted by very good gynecologists. I then proceeded to the D&C/hysteroscopy on both occasions, during which procedures I felt nothing as I was under anesthesia.

A D&C could resolve a bleeding problem immediately, as it did when I had the polyp removed during the D&C. The second D&C told the gynecological oncologist that I had a rare, aggressive form of cancer, which given the location of my tumor, might have been missed in the biopsy. So I share the same sentiments as CheeseQueen about favoring a D&C/hysteroscopy over a biopsy, as long as someone doesn't have another condition that makes anesthesia problematic.

JillAndrea's picture
JillAndrea
Posts: 30
Joined: Jan 2020

Hi Djen,

I went through a 4 month diagnostic period that seemed like unbearable waiting.  From my first doctor appointment in August to a final diagnosis in November, and surgery in December, the waiting felt like I was living in slow motion.  

Honestly, I had to talk myself down many times.  It was helpful to remind myself that uterine cancer is very slow growing, so nothing was really changing within me while I waited... I would just acquire the facts and findings that already existed.  It was also helpful to know that survival rates are very high with uterine cancer.

What helped me the most, though, was staying busy with life. Keep my brain preoccupied with many things, and not focusing on negativity.

I did end up with a cancer diagnosis, and I am in treatment now.  I know that I am doing everything in my power to kick this, and if you are diagnosed, you will too!

 

zsazsa1
Posts: 553
Joined: Oct 2018

Well, ladies, you are all less radical than I am, recommending D&C over outpt biopsies.  I've had it all, and my feeling is, if you're done having kids, and are post-menopausal, or close to it, have a hysterctomy, instead of worrying.  But we are all looking at it from the viewpoint of someone with cancer.

I had symptoms for a year - clear discharge - and my regular GYN told me it was nothing.  That bad advice has cost me much suffering, and may cost me my life.  How I wish I had insisted on testing and then surgery, a year before diagnosis.

Molly110
Posts: 186
Joined: Oct 2019

ZsaZsa, I know just what you mean. My older sister had the same symptoms I had -- too-thick lining and spotting -- and her gyn has been wanting her to have a hysterectomy for years. I ignored years of spotting and as a result am likely to have a much shorter life than I assumed I would. So, I really encouraged my sister to follow her doctor's advice. She had a robotic hysterectomy two weeks ago and now I will never have to worry about her having uterine cancer. For women who are in menopause or who don't plan on children, if they have any cancer risk, I hope they think seriously about the benefits of the surgery.

JillAndrea's picture
JillAndrea
Posts: 30
Joined: Jan 2020

I don't think there is enough awareness or preventative measures when it comes to uterine cancer.  I grew up getting annual pap smears and was led to believe that was all I needed to do.  

Two years ago my OBGYN prescribed estrace because I was having pain with intercourse.  I am post-menopausal, and after 2 months on the estrace I started lightly spotting once per month, like clockwork. I thought the drug was "rejuvenating" me.  It wasn't until many months later that other symptoms brought me back to OBGYN and a transvaginal ultrasound showed a 14mm lining.  When I told my dr about the spotting he said, "you should have called me."  I didn't know I needed to be concerned.

If uterine cancer is so common, then certainly once a woman turns 50 there should be some standard annual screening.  If my atypical hyperplasia had been found before it became cancer, I could have had a hysterectomy and prevented the cancer from developing.

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2878
Joined: Mar 2013

I hear your gyn's response and cringe.  To push it back on you makes me ill.  There is responsibility is on their part here.  MAYBE if they had told YOU, you would have come back and told them sooner.  

Unfortunately, there isn't a 'test' developed for uterine cancer.  Cervical - yes.  Breast - yes.  Even with the mammogram, I had a friend who would tell her doctor she didn't feel good.  He just pushed her off and said she was taking care of herself and her diabetes.  It wasn't until she was in so much pain her husband drove her to the emergency room and she was found to have Stage IV breast cancer and was put in hospice.  For all of us I think the moral of the story is:  know your body and be your own advocate.  Some of us hit the lottery with our docs, sometimes not. 

Forherself's picture
Forherself
Posts: 503
Joined: Jan 2019

That is part of the problem.  It is not common.  So there are not enough women to run trials on treatment.   And there are several types so each type has even less cases to research.   

I do feel that there is not enough education about uterine cancer.   All of us with uterine cancer would happily have a hysterectomy if we could go back in time.

 

Gary O's picture
Gary O
Posts: 3
Joined: Feb 2020

On January 23rd I learned I have Advance Renal Cell Carcinoma that is a recurrence from 2013 when I had a partial Nephrectomy of my left kidney. It was found in my Lung Lymphnode and is Clear Cell Stage 4. I have had an initial visit to the Oncologists and she has ordered a MRI and referred me to a specialist for Clinical Trial consideration. She indicated it cannot be treated with chemo and the drugs may be too harsh. I am 66 years old, a consultant and still working as an independent. She also indicated we can manage this and gives me 40 months.

i am trying to carry on without acting afraid but I am confused about what to do next, who to tell. My wife is a brave lady and we have tremendous faith in God!

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2878
Joined: Mar 2013

Gary, I can absolutely see why the "really scared" thread caught your eye, I don't know exactly what would be going through my mind myself.  If the ladies have anything to add, I am sure they will be along, but you might also want to check out the Kidney CSN board to see if the folks over there have any ideas.  Please know you are in my prayers.

Forherself's picture
Forherself
Posts: 503
Joined: Jan 2019

I am so sorry to hear this has happened.  I think some of the other boards are not very active.  We do share the same feelings.  I am wondering why no drugs would work?  We are not as knowledgable about other cancers.  It seems like you need someone to talk to.  There are therapists who specilize in dealing with cancer.   I get how you want to try and act not afraid., but sometimes you need to talk about how you really feel.  

MoeKay
Posts: 317
Joined: Feb 2004

Hi Gary, as NoTimeForCancer mentioned above, you might have better luck getting information on CSN's Kidney Cancer board, but for what it's worth I will tell you what little I know about advanced kidney cancer. 

My husband's cousin was diagnosed with kidney cancer around the age of 70 or 71.  He initially had the affected kidney removed.  I don't recall what other treatment, if any, he had at that time, but eventually his cancer recurred and he had targeted radiation.  Ultimately, he was prescribed Opdivo (nivolumab).  I'm not sure if that was part of a clinical trial or not, but he had remarkable results on the Opdivo.  He was able to keep his metastatic kidney cancer at bay for about 15 or 16 years, and only last year passed away two months shy of his 87th birthday.  He had an excellent quality of life up until a month or so before his passing.  FYI, my husband's cousin was treated at Fox Chase Cancer Center in Philadelphia, and both he and his wife raved about the care he received there throughout the years. 

If I were in your situation, I would definitely get other opinions on your available treatment options at this point.  Hang in there, I think you will feel much better once you have a plan of action in place!!

Wishing you and your wife all the best. 

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