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Biopsies vs. D&C

Truenortherngirl
Posts: 24
Joined: Feb 2020

Hi, I was diagnosed with simple cystic hyperplasia in July 2019 along ovarian cysts based on a uterine biopsy.  I'm 51 years old.  My endometrial lining at the time was 12mm.  I was told this has a very low chance of becoming malignant over time.  My gynecologist put me on 80mg of megestrol acetate for 4 months.  Then I returned to his office for another biopsy just before Christmas 2019.  Thankfully that biopsy has returned free of hyperplasia.  Now I am going to stay off the drugs until my next biopsy which is in April, 2020.  I'm concerned with the reliability of the biopsies.  I've heard a number of women on this forum say that their cancer was only caught by a D&C.  The doctor has not mentioned a D&C once nor has he mentioned a hysterectomy.  My mother passed away from lung cancer (I am not sure it was the primary cancer) when she was 44 (I was 6 years old).  My mother had a hysterectomy just two years before she passed away.   I'm not sure of the long term implications of a hyperplasia diagnoses but I don't think I want repeated biopsies year after year.  Do I have to worry about the reoccuring or progressing for the rest of my life?  Thanks for reading.

 

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

This past September I had a biopsy due to a 14 mm lining, but it missed the cancer.  It showed hyperplasia with glandular crowding, so my obgyn wanted a full D&C to properly diagnose and treat the hyperplasia. The D&C found the cancer.  

Having been through that, I would always recommend a D&C instead of a biopsy, especially for women over 50 with an abnormally thick lining.  Biopsies only capture a small tissue sample, while a D&C removes the entire lining.  And if you don't have cancer, the D&C can be curative, as well as diagnostic.

The D&C was not a difficult procedure at all.  It is outpatient "surgery"... done in the hospital and put under IV anesthesia.  The procedure is about 45 minutes, post-op recovery for me was 2 hours, and then I was home.  I was achy/crampy for about 2 days after but nothing bad.

I am still recovering from a Davinci radical hysterectomy on Dec 27. That pathology showed atypical hyperplasia merged with adenocarcinoma stage 1a, grade 2.  I am actually having a review meeting with the pathologist this week and she is going to go over all the findings from all 3 procedures to help me understand it all.

Next for me is 5 rounds of bracytherapy in March.

 

 

Truenortherngirl
Posts: 24
Joined: Feb 2020

Thanks for your response JillAndrea.  Your situation is what has me second guessing the course of action my gynecologist has chosen, despite the fact that the doctor said the biopsy accuracy is 90%.  At this point in time, I don't even know the game plan.  He is not the most imformative type.  I did ask him what happens if I have hyperplasia on my next biopsy and he said I would have to return to the megace.  Even without a complication like T2 Diabetes, I found the drug tough to handle.  Then he said if the biopsy comes back clean then he would like for me to get a Mirena I.U.D.  The D&C sounds like the route to go so I will ask him on my next visit.  It seems here in Canada that the docs are trained to avoid surgery at all costs, even just a D&C, never mind a hysterectomy.  

Forherself's picture
Forherself
Posts: 383
Joined: Jan 2019

A thought just crossed my mind.  I don't get the feeling that you are confident in your gynecologist.   When you have hyperplasia, which can be pre cancerous, I think it is reasonable that you request a referral to a gynecological oncologist.  You will receive the best up to date care for this condition from one in my opinion.   Preventing an endometrial cancer would really increase the enjoyment you have of your life.   I think I would request a referral to someone more pro active.  

Truenortherngirl
Posts: 24
Joined: Feb 2020

Hi JillAndrea, I am just wondering what type of hyperplasia they diagnosed you with on that first biopsy, simple, complex, any atypia?  Forgive me for my ignorance but is a radical hysterectomy when they take the cervix too?  I'm crossing my fingers, toes and everything else for you!  Please keep us posted.

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

Truenortherngirl, The biopsy did not specify the type of hyperplasia, and the pathologist stated that a D&C was necessary to properly determine that.  The biopsy just said "glandular crowding".  The D&C results showed atypica hyperplasia merged with adenocarcinoma.

LisaPizza's picture
LisaPizza
Posts: 304
Joined: Feb 2018

Including the cervix just makes it a total hysterectomy. A radical hysterectomy is where they also remove more of the tissue around the uterus. That makes it a potentially longer recovery. Radical hysterectomy is not typical for endometrial cancer,  but it is typical with cervical cancer, and they're more likely to need a urinary catheter for a while at home after surgery. 

 

Whether or not the ovaries are removed is a separate issue. That surgery is called oophorectomy,  and is not part of the hysterectomy, whether total or not.

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

Lisa Pizza, thanks for the clarification.  Perhaps I misunderstood - I had Davinci robotic surgery with everything removed (Uteris, Ovaries, FTs, and Cervix) , plus a lymph node disection, with a vaginal cuff created. I do know that my recovery has been much longer than what I am hearing others have described.  I am nearing the 6 week post-op mark, and I still have a lot of pain, abdominal swelling, and difficulty going to the bathroom.

MoeKay
Posts: 278
Joined: Feb 2004

Jill, I would suspect that your Operative Report should tell you what type of surgical procedure your gyn-onc performed.  For example, mine states at the top of page 1,  "Exploratory laparotomy, Type II radical hysterectomy, bilateral salpingo-oophorectomy, and bilateral paraaortic and pelvic lymphadenectomy."

MAbound
Posts: 1042
Joined: Jun 2016

I had the radical procedure along with an oopherectomy and removal of sentinal lymph nodes for testing. It's beyond a total hysterectomy because connective tissue and and the top part of the vagina are also removed to get clear margins. They also removed my omentum and did a pelvic wash. I came out of surgery with a catheter and a drainage tube, so my discomfort during recovery was longer than with a robotic procedure. No picnic, but necessary when this cancer doesn't get caught early. I had both a PET scan and an MRI as part of my pre-surgical testing to guide my surgeon for how far he needed to go. I must have lit up like a Christmas tree.

MAbound
Posts: 1042
Joined: Jun 2016

I don't know how your CKD impacts any of this, so I'd run it all by your doctor(s) first, but because chemo causes constipation like you wouldn't believe, most of us get advice like drinking 2-3 quarts of water a day along with taking Mirilax to deal with it. Drinking water is the really important thing along with getting up and walking around for part of every hour, but I don't know if you have any special considerations for pushing yourself to drink more than you are. Constipation is very possibly contributing to your pain and abdominal swelling, so you really need to get some guidance on how you can take care of it. Don't wait for it to get worse.

BluebirdOne's picture
BluebirdOne
Posts: 327
Joined: Jul 2018

I healed well, but slowly, was almost incontinent and the bowels couldn’t make up their mind whether they were going to go fast or slow on any given day. So it was hard to figure out if I needed Senacote or Imodium. Weird, but it resolved to 95% normal for me. The urge to urinate came on so fast! By the time I got the “signal” I needed to go, it was too late, I had to run to the toilet. No grace period. So I got overly full with no warning. This was explained to me that some combination of things could be the problem. Nerve damage and/or the act of removal of the organs, swelling and slight moving around of what was left during surgery could cause urgency problems or lack of proper signaling, your internal organs and tissues surrounding the uterus, etc. had to adjust to an empty space.  I had stress incontinence prior to the surgery so that was also a factor. The urgency and difficulty in realizing I have a full bladder have become better but not great, but a minor problem. We adjust. The bowel issues resolved in time, but my process never was the same as pre surgery. Different, but not problematic. For you, it sounds like you may have extra swelling or fluid retention. Also, for me having had two C-sections prior to the robotic surgery, the actual pain of incisions and general healing were much greater with the C-section, but the internal healing, swelling, and pain was not that much different for me. I was able to be up and about quicker, but had residual soreness, swelling, and lack of energy for about 6 weeks. Some people just recover more quickly than others. The important thing is that my docs were aware of the situation, asked me to monitor and report immediately any worsening or lack of progress.  I also was older at 67, and probably don’t heal as quickly. I feel like my uncomplicated surgery and treatment has taken me MUCH a longer to recover from than I expected, 18 months out. I can only recently begin to walk an entire hour, three miles, without paying for it later with aches, pains. I have had osteo arthritis for 25 years in my spine, hands, wrists, shoulder, and now recently knees which is exacerbated by fatigue and becoming more sedentary during treatment. So it has been slow going for me, but I am still regainping more of my prior fitness. Hope this helps. 

Denise

LisaPizza's picture
LisaPizza
Posts: 304
Joined: Feb 2018

That would be at least a total hysterectomy plus bilateral salpingo-oophorectomy. Could have been radical, you'd have to ask. 

MAbound
Posts: 1042
Joined: Jun 2016

The megace helped to treat the hyperplasia, but it hasn't done anything about addressing any of the risk factors you have for getting this cancer. If you are unfamiliar with them, they are listed at: https://csn.cancer.org/node/321235

The megace does not confer any long term protection against utuerine cancer and it's usually only used for a prolonged time for advanced stage or recurrent hormone driven uterine cancer which hyperplasia is a pre-curser of. Biopsy can miss cancer and the procedure will get to be more painful with repetition. You are under anesthesia for a D&C and it is more thorough. I second considering asking your doctor for that rather than the biopsy that is planned on.

Given your mom's history and your hyperplasia, it sounds like you have dodged a bullet so far, but you really have to give some thought to protecting yourself from getting it down the road by understanding what is putting you at risk for this and taking whatever pro-active action that you can. A prophylactic hysterectomy is perhaps the most certain solution, but there is no guarantee that your doctor would be willing to do it at this point. Angelina Jolie had one, but then she probably had the money to pay for it out of pocket and her doctor didn't have to worry about getting insurance approval for it. Still, I think it's in your own interest to understand what drives this cancer's rise and ask your doctor(s) for help in fending it off. Different doctors have different philosophies on how to treat patients. Some are "let's wait and see" and some are more "let's get this taken care of". It never hurts to get more than one opinion when you are dealing with something as serious as this. If you can get a referral to a gyn-oncologist at this point for advice about preventing this cancer, I'd go for it because they have a lot more expertise with this cancer than an ob/gyn has. Another option would be to spend time with a naturopathic doctor specializing in oncology who could guide you through some preventive measures that you can adopt for yourself depending on what risk factors you have. Many of us adopt a complementary medicine approach to dealing with this cancer to support us through treatment and improve our health afterwards.

You have the opportunity that many of us wish we had before we were diagnosed out-of-the-blue with this cancer. You really can't be passive about it even though you dodged the bullet this time. Use the grace that you have been granted to learn what you were never told before and to do what needs to be done to protect yourself. You won't regret it.

Truenortherngirl
Posts: 24
Joined: Feb 2020

Hi MABound, thanks for your insight.  I looked up your profile and noticed that you were 59 and still not in menopause at the time you were diagnosed.  So other than late menopause, there were no other symptoms?  I feel like if I were to just sit on the sidelines I could be in the same boat.  My fsh is 4 so I'm far from menopausal despite being 51 (my doctor said that is similiar to what it would be for a 14 year old)?   The hyperplasia was only diagnosed in the first place because the gyneacologist insisted he do a vaginal ultrasound before he removed a Mirena I.U.D. (it was ancient at 8 years old).   They then found a ovarian cyst and started watching more closely.  Upon returning 5 months later for another scan, my ultrasound revealed a bulky uterus.  It seems in just 5 months, that without that Mirena IUD my endometrium doubled in thickness. 

As far as risk factors go, I was diagnosed with PCOS when I was in my mid-30's and pretty much forgot about it until this hyperplasia appeared.  Also, my paternal grandmother passed away from ovarian cancer.  The risk factor that of course weighs me down the most is my mother's death at age 44.  Other than that I am not over weight, I'm extremely active, don't smoke and eat well, etc.  I am also not adverse to a hysterectomy but do worry about the surgically induced menopause as I'm quite sure my ovaries would go too.  With an fsh of 4, I think I would be in for a rough ride.  Having said that, much less rough than a diagnoses of cancer!  I am going to push the envelope and get a second opinioun.  Thank you.

MAbound
Posts: 1042
Joined: Jun 2016

Actually, I think I was a poster child for being at risk for the endometrial adenocarcinoma I was diagnosed with, but I never had it on my radar because there is no screening test for it and no education about it. Still!

Besides being so late for menopause I had early onset menopause (10)and suffered from estrogen dominance and had prolonged, flooding periods all of my life. (Remember growth hormones to increase cow milk production?) I gradually gained weight too, as I got to middle age, and never got it to go back down to where it should be. I was always very active physically, but not a gym rat. i never had a doctor who didn't blow off my questions about my periods.

During treatment, I tested positive for Lynch Syndrome, so there was that. My mom had a hysterectomy in her 40's because she was spotting between periods. My sister lost an ovary due to a benign tumor and torsion in her 20's and had endometriosis so severe she couldn't have children. She had PMS so bad in school that the nuns would send her home from school ashen and in severe pain. All she got from a doctor in the late 70's was an offer to refer her to a psychologist. (Before she lost the ovary and the endometriosis was diagnosed). My daughter had a squamous cell lesion on her tongue removed two years after she finished college and developed hypothyroidism after that for which she is taking Synthroid. She has been diagnosed with PCOS, like two first cousins of mine have, and has since also lost an ovary and is now on birth control to help with her hormone balance. She's also on metformin for the PCOS. She started her periods early like me. I really worry about her, but she has doctors (including a gyn-oncologist who removed her ovary) for every body part at this point. To say I have a strong family history is an understatement and yet because there is no educating of women about this cancer, nobody ever put two and two together in time for me.

I was pre-diabetic and just being monitored by my PCP when I was diagnosed with this cancer. I am on Metformin now, but a bit angry that I wasn't put on it sooner. The American Diabetes Association recommends treating pre-diabetes with Metformin as a prevention measure to progression to full-blown diabetes, but I had a "let's-wait-and-see" type of doctor at the time who wanted my numbers to be higher before she would treat me just like she wanted me to be past 60 before looking into my late menopause.

There were also all of the environment exposures to endocrine disruptors that just weren't on anyone's radar that I've been exposed to all of my life. I''d been working at reducing what I can long before I was diagnosed with cancer, but there were many years before I was aware of them that probably didn't help me. One can't live in NJ, land of superfund sites, for long without eventually waking up to what they are and how they are everywhere. That was in the 90's for me, so it a process to work at and keep vigilant about.

So, as you can see, I'm a perfect example of "If only I knew then what I know now!", especially as I was getting past the age of when most go through menopause. It also goes to show that there is no such thing as a doctor who knows everything about everything. It's good that you are considering getting additional opinions and advocating for yourself for your own protection. Nobody will be as motivated as yourself to do so, so be that squeeky wheel until you have confidence that you are hearing from someone who knows what they are talking about.

Truenortherngirl
Posts: 24
Joined: Feb 2020

Thank you so much for the motivation.  I have been referred for genetic testing at the same hospital where my mother passed away so I anticipate being tested for Lynch among other things.  Quite honestly, I didn't even know a woman of our age should see a gynecologist.  I thought the need for that was over after our child bearing years.  I was so ignorant and I blame the health care system and physicians.  Why aren't there informative posters in waiting rooms and/or examining rooms of family physicians and even gynecologists offices?  I had no idea that heavy bleeding with clots was a sign?  An ultrasound is not an expensive procedure to the health care system and reveal a lot about a women's gynecological health.  I am just lucky that I needed an IUD removed and had a gynecologist who insisted on doing an ultrasound!  I wish you the best MAbound!

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

I forgot to mention that my OBGYN was recommending a hysterectomy even without a cancer diagnosis.  His perspective was that hyperplasia would most likely evolve to cancer and you can prevent it with a hysterectomy.  

Also, I was put on megace after my biopsy confirmed hyperplasia, but I had difficulty with it.  I am a T2 diabetic, with controlled blood sugar, and when I started the megace my glucose shot up to the 400s. Nobody could explain it.  I stopped taking and it took over a month for my blood sugar to normalize.

In retrospect, if I had known I had hyperplasia years ago, I would have welcomed a hysterectomy then to prevent the cancer, especially knowing the risk of recuurance, even after treatment.

CheeseQueen57's picture
CheeseQueen57
Posts: 924
Joined: Feb 2016

FYI I've been on Megace for about 2 years and although it controlled my reoccurrence and put me NED, I've gained 20 pounds, am hungry all the time, and now have diabetes (controlled with insulin and prandin). But I guess cancer is worse, eh?

Truenortherngirl
Posts: 24
Joined: Feb 2020

Hi CheeseQueen57, thanks for your reply.  I am pleased to hear you are NED but goodness you have been through a lot to get there (I just finished reading your profile)!  I can't imagine what 800mg of megace is like when I've only been on 80mg a day and I found that challenging.  The more I read, the more courage I have to stand my ground and not wait for this condition to progress.  It seems our health care system (here in Canada) only treats and doesn't consider prevention.  I'm not sure I will get too far but I don't want to look back and say I didn't try!  

CheeseQueen57's picture
CheeseQueen57
Posts: 924
Joined: Feb 2016

Oh...  I'm only on 80mg!

Truenortherngirl
Posts: 24
Joined: Feb 2020

Oh geez, that's a bit better than 800mg!  About 6 weeks in on the megace, I started bleeding heavily with clots, had dizziness, weakness and the most intense cramps I've ever felt (not like a normal period). That lasted for about 3 weeks and then calmed down.  I guess that is just what it took for me to shed the lining?!  I would rather do this with a D&C anyday!  I'm booked for April so I will let you know how it goes.   I'm going to try and convince him to do a D&C instead of the biopsy.  Before that I will see if I can get a gyn/onc referral or at least a referral to a different gyn.  I'm also off to genetic testing.  Thanks.

Forherself's picture
Forherself
Posts: 383
Joined: Jan 2019

In that sytem you really do have to advocate for. yourself.  And don't hold back on your symptoms.  The sqeaky wheel gets the oil, as my sister in law says.  If your Megace is hard to take make sure you mentionevery reason why.  The gynecologist can use all your information to make it more likely you will get in to see a gynecological oncologist.  For some reason, with gynecological cancers the surgeon and the oncologist are the same person.  They just have more experience dealing with cancer diagnosis.   And it sounds like your case is complicated and deserves a pro active approach.   

Truenortherngirl
Posts: 24
Joined: Feb 2020

Hi Forherself, you are absolutely right, I am learning quickly you do have to advocate for yourself.  When returning to the physician for my second biopsy, the gyn didn't even ask me about my experience on the drug.  It's a bit of a conveyor belt in his office.  It's just another reason to get a second opinioun.  Usually the nurse will come in and request I get undressed and in the chair for the procedure before the doc comes in.  During the biopsy he is concentrating and I am a bit uncomfortable so I don't ask any questions.  I will insist on having a chat before I even get undressed because otherwise he's out the door on to the next patient.  I even asked my sister is I was being too demanding of a patient to seek some clarification about "the plan" as I'm now going on to my 3rd biopsy!  She said it is absolutely understandable that I am frustrated and haven't had things explained.  Thanks.

oldbeauty
Posts: 244
Joined: May 2012

Since you are going for 2d opinion, you might ask about Provera.  It is in the same class as Megace but a different formulation--medroxyprogesterone acetate.  I was put on that after a recurrence while living overseas in a Commonwealth country.  I took 200mg twice a day and it kept me in remission for 4 years before another recurrence here in USA which was treated with chemo.  My USA endocrinologist told me to stick with Provera (even tho the largest dose available in USA was a 10mg tablet) because she said the weight gain issue with Megace was so likely.  The high dose knocked my adrenal gland into permanent slumber but that is controlled by taking a small daily dose of hydrocortisone.  I actually wish I was still on the Provera but they took me off it bc the recurrence suggested it was no longer effective,  But now I am also taking Metformin (thanks to takingcontrol58), which seems to be working to counter a slow growing lung nodule.  So, like the others, I say educate yourself and advocate strenuously.  To the extent you can, if a doctor is distant or gets huffy over being questioned, find a new doctor.  Best wishes, Oldbeauty.

Armywife's picture
Armywife
Posts: 397
Joined: Feb 2018

I'm not sure of Canada's health care rules, but if you're able, I'd encourage you to seek a second opinion.  Medicine is sometimes more art than science, and you deserve having your situation looked at from a different angle.

Truenortherngirl
Posts: 24
Joined: Feb 2020

Hi Armywife, I am going to get a second opinioun.  I do have "extra" coverage in the Canadian Cleveland Clinic here in Toronto.  I don't know that they will get me a referral to a gyn/onc but I'm sure I could get one to see a different gynecologist.  I truly feel in the dark right now as I'm going on to my 3rd biopsy in 9 months (scheduled for April) and he hasn't discussed his plan of action with me.  It's discouraging going through these biopsies and not knowing to what end?  Never mind wondering whether the biopsies themselves are reliable.  Thanks!

Molly110
Posts: 119
Joined: Oct 2019

True Northern Girl, I join the chorus encouraging you to see a gynecologist who is also an oncoologist. My regular gyn thought it unlikely that I had cancer, but he wanted me to have a D&C because my uterine lining was very thick and despite my age I wasn't hormonally in menopause. Because those last two were risk factors for endometrial cancer, he referred me to a wonderful gyn/onc. He told me that although he thought it was very unlikely that I had cancer based on several good factors, it was always a risk with my symptoms, and he wanted the D&C to be done by someone with a lot of experience with endometrial cancer who would know what he was seeing if sometging wasn't right. I am so grateful for that referral although I was terrified by it at the time. So, you might find it scary to think of yourself and the word "oncologist" in the same sentence. But it will make all the difference to your peace of mind to be checked out by someone who is up to date with the latest diagnosis and treatment. 

Because all the women here have or had uterine cancer, it may seem like it's inevitable that you do, too, but that isn't of course true! It will be wonderful to to learn that you have nothing to worry about or, if there are any concens, to be able to take preventive action. 

 

BluebirdOne's picture
BluebirdOne
Posts: 327
Joined: Jul 2018

So many gynecologists have not seen many cases of cancer, especially if they do more OB than GYNE. My initial doctor told me that the likelihood of cancer was small, (not true), if it was it would be cured by hysterectomy (true for  many but he conveyed it in such a way that my risk was small, but curable, this made me complacent), but luckily suggested a  hysteroscopy rather than a simple D&C.

A D&C (dilatation and curettage) is a procedure where the opening of the uterus (called the cervix) is widened and the lining of the uterus is scraped away.

A dilatation and curettage of the uterus lets your health care provider:

find the cause of unusual bleeding (such as during menopause, after sexual intercourse or abnormal menstrual bleeding)

look for growths

end an incomplete miscarriage.

A hysteroscopy is a procedure that allows your doctor to see inside your uterus and make a diagnosis.

The D&C is performed during the hysteroscopy. I was dx with UPSC from this. I did not know anything about the type or grade of any uterine cancer so after the shocking news, which my doctor did not prepare me for, I had to educate myself about this terrible DX. The point being is that while proactive, he downplayed the fact I could have cancer and he admitted he had seen very few cases of USPC. A gynecological oncologist will have seen many cases and have the experience to guide you through your procedures, especially given your family history. They may even want to perform the D&C. Second opinions give peace of mind, confirming or not confirming your situation. 

Good luck to you! 

 

Denise

 

 

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