New to the Sisterhood

WinnieH

Hello,

I have been lurking the forum for a few days and I deeply appreciate all the great info posted here. Although I have not received a final diagnosis yet, I'm pretty sure I have cancer based on the information I have so far (still waiting for the biopsy results) and I'm scared.

Some background: I just turned 49. My periods have been normal but I started spotting inbetween periods since July 2017. I figured it was menopause creeping up. It got to a point where I had to wear a pad full time for the past few months because it became a light period so I went to my doctor in January 2018. He did a pap smear and the results came back as follows:

Epithelial cell abnormality

High grade squamous intraepithelial lesion, severe dyslplasia/carcinoma in situ, at least, is present. A microinvasive or invasion lesion cannot be excluded.

Atypical glandular cells of undetermined significance (AGC) are present.

Speciment reprocessed for interpretation using glacial acetic acid.

ADEQ: Satisfactory for evaluation endocervical and/or squamous metaplastic cells (endocervical component) are present.

Referred to a GYN and he did a colposcopy. He saw a bleeding mass in the cervical area, did a biopsy on it and also performed an endocervical curettage. Results are not back yet but the GYN fast tracked me to a GYN-oncologist and ordered a CT. I didn't do an ultrasound because I couldn't tolerate holding 40 oz of water 1.5 hours before the procedure since I started cramping badly when I tried a week earlier. I'm not sure if it was caused by a urinary tract infection that my primary also found. I was prescribed some heavy duty antibiotics for the UTI.

The CT report said:

There is abnormal thickening/hypodensity within the uterine cavity measuring 3.4x5.4x3.3 cm. There appears to be abnormal lymph nodes along the pelvic sidewalls. A 1.6x1.3 cm lymph node with central decreased density is noted in the left pelvic sidewall. There is a right pelvic sidewall lymph node measuring 1.5x0.9 cm.

Saw the GYN-Onc last week and he did a visual exam and said it looks like cancer but we need to do a PET scan and wait for the biopsy results. He's already looking for a second opinion to look at the biopsy slides when they come in. Either way, he recommended a hysterectomy or radical hysto, pending my results. I'm anxious to get the PET scan done ASAP. I think I can handle uterine cancer but not sure I can deal with cancer spreading to other organs. This is the one time I wished I had selected a PPO instead of an HMO since it takes time to get authorizations. The doctor's assistant keeps telling me it takes 7-10 days. Do I have that much time to wait? if everything takes 7-10 days, I might not have surgery until a month out.

So here I am, four days counting and I'm just all over the place. I'm having cramps and massive back pain that prevents me from sleeping more than an hour at a time. I take tylenol to control it but this quality of life is not good.

Sorry for the long post.

Thanks,

Winnie

 

 

NoTimeForCancer

Winnie, don't apologize for

Winnie, don't apologize for the long post, you told us a lot of information that we would have ended up asking you.  It really does let us know what you are dealing with.  

First off, take a breath.  You are working with a gynencologic oncologist, which is good.  From PAP to hysterectomy is a big jump, a D&C is usually the intermediate step to get a better picture as a PAP smear is not really the way to detect uterine cancer - but it sometimes shows up that way as some women here have experienced.  

My two cents:  Wait to get the test results.  I know  7 - 10 days seems like an eternity, but that is not that outrageous of a wait.  I found out on April 5 and wasn't supposed to have a meeting with my gyn onc until April 17.  The only reason I got in on April 11 was because, as the patient, I called and asked.  

I would recommend you getting the second opinion.  As a gyn onc, I am surprised he would say from a 'visual', 'it looks like cancer'.  The testing is what really determines that, so maybe he can give YOU the name of someone else to go see rather than him waiting for someone else's confirmaiton.  I don't know about the other ladies, but that kind of bothers me.  

I am sure the other ladies will be along shortly, but ask about a D&C and if you can get the second opinion yourself.  

MAbound

No D&C

Hi Winnie,

So sorry that you needed to find us, but glad that you did. Your story sounds a lot like mine in that when I was finally sent for a biopsy, I could tell from the look on the gynecologists face that I had cancer even before the biopsied tissue was sent out. If they are seeing a lesion and the pap smear confirms a high grade squamous intraepithelial lesion then they'll probably skip doing a d & c and go right to the hysterectomy. The PET scan they'll do because that assists the surgeon to know how much besides the uterus he needs to take out to diagnose the type and stage of cancer you have and develop a plan of care from there.

From the sounds of things so far it almost sounds like you may have a cervical rather than uterine cancer, but that can't be determined until after the hysterectomy. My cancer started just above the neck of the uterus and grew both down to the cervix and up into the uterus which confused the oncologist for a while. Certainty about what's going on can't really happen until after the hysterectomy is done and the pathology report gets finalized.

As far as the speed with which things get done, there is time and having to wait a month or a bit more for surgery is not all that unusual. You  can get a surgery date while waiting to get in for the PET scan. I know once the C word is mentioned you want it out as fast as possible. It's the enemy and we want it gone. 

Again, I'm so sorry that this is happening to you, but you found a good place to come to get your questions answered. Right now I'd focus on learning what to expect from your surgery and recovery. Wait on learning on how cancer is treated until you know exactly what you're dealing with. There are so many different scenarios that researching ahead of time is rather pointless and would probably only end up scaring you needlessly. It's all doable, but all of the what if's can be overwhelming so it's better to zero in on what's only relevant to your particular circumstances as you learn them. Sending you a virtual ((hug))!

WinnieH

NoTimeForCancer

I forgot to mention but now I recall that the gyn-onc mentioned a procedure to scape the uterine wall and take a tissue sample. It would be done under general aneasthesia. Does that sound like a D&C? He basically explained that it might show negative for cancer but it could be because he sampled a spot that didn't have it. So he thinks a hysterectomy is the safest route. I wonder if a PET scan would deliver comparable results to a D&C.

Thanks for mentioning this. I will follow up with his office to find out if I still need to do that tissue sampling.

WinnieH

MAbound

My anxiety is through the roof but I will try to keep reminding myself that a month from surgery should be alright. I just feel like I had a late start on this journey when the spotting happened eight months ago and I didn't do anything until now. Thank you for suggesting research on preparation for the surgery. I hope I am eligible to have the hysterectomy done robotically instead of open. I am also a caregiver for my 86 yo mother that broke her hip last year with a heart condition so a shorter recovery time would be so helpful. I keep hoping for the "better" of two options (cervical vs uterine cancer) but it seems I have been getting the worser one. Ughh...

MugsBugs

D&C and Hystoscopy

WinnieH - something you said concerns me that the D&C could be negative.  This is true, this is why my gyno did a hystscopy with the D&C.  with the hystoscopy a camera is used to look at the uterus. This helps determine where to take the uterine scraping from.  In my case the gyno said the uterus looked good except there where two ‘calcification’ areas (I also had fibroids) and this is where she determined to take the scrapings from.  Make sure and ask your ‘gyno’ if he/she does a hystscopy.  You want that!

WinnieH

Quick Update

I spoke to the dr's office again and a D&C may be performed once the dr. gets the PET scan results and a second opinion from a pathologist on my biopsy. The PET scan is scheduled for Feb. 13.

WinnieH

MugsBugs

Will do, thank you for the great advice.

txtrisha55

Glad you found us Sorry you had to.

I was 54 already through memopause when I started heavy bleeding. Was in the DR office within 2 days and having a D&C done in two weeks results came back in 10 days (1 April)  that it was grade 2 stage 3ca MMMT cancer.  Met with gyn onc dr 4 April had total abdominal hysterctomy removing everything and the omentom (layer of fat protecting the organs) 8 April.  I went straght from the D&C to TAH never had CT scan or PET scan before surgery.  The endocervical curettage was done by a small spoon like tool that took scrapings of what could be seen in the cervical area.  This is not a D&C.  A D&C is when you are put to sleep and they almost always do a hystoscope when they do one of these.  If the first doctor saw the mass in the cervical area to do a scraping the second gyn onc dr could see it too and with the other paperwork prbaboly could state it was cancer without getting the pathologcal report from the scraping yet.  If is was a good and experienced gyn onc dr.   The results from my surgery went to a board of gyn onc drs to discuss what it said and they determined a course of action.  I had 6 rounds of chemo and no radiation.  Each patient is different as is each cancer and how your body will respond to treatment.  So getting a second opinion is good.  If you do not like what they say get all your records and find antoher gyn onc dr and get a third opinion.  You are your own advocate,

Unfortunately we as women are not told all the other things to look for and we always assume that bleding at a certain age is menapause.  Drs also tell us that too.  So even when we think it is something else without testing no one can be sure.  There are no bad questions on this site.  The ladies here are very forth right and honest about what they have gone through.  Take it one day at a time.  Breath.  Rest when you can.  Read up on it.  This site has lots of information and directions to other helpful articales.  Stay off Google must that stuff is out of date and scary.  In August I will be a 7 year survivor from my last chemo treatment and no sign of recurrance. 

Good luck and come back when you know something. trish

XTREME

MugsBugs said:

D&C and Hystoscopy

WinnieH - something you said concerns me that the D&C could be negative.  This is true, this is why my gyno did a hystscopy with the D&C.  with the hystoscopy a camera is used to look at the uterus. This helps determine where to take the uterine scraping from.  In my case the gyno said the uterus looked good except there where two ‘calcification’ areas (I also had fibroids) and this is where she determined to take the scrapings from.  Make sure and ask your ‘gyno’ if he/she does a hystscopy.  You want that!

HYSTEROSCOPY. It's unusual to

HYSTEROSCOPY. It's unusual to have this done in doctor's office because it's very painful, but I did it, unfortunately, too late.

7 doctors over months, a few years, kept insisting I needed a d&c when all biopsies and the d&c I finally got returned with report: some atypical cells, too little tissue.

This was because there was a large fibroid blocking view of and access to tumor. Even though the hospital d&c uses cameras, I was told in retrospect, theirs are not as flexible as the ones in my doctor's office.

It's rare to find a non-hospital facility or doctor's office that offers hysteroscopy. I discovered this via online research a year ago, when I was afraid to have d&c (don't like or trust hospitals, and have too many other chronic illnesses, many with constant symptoms similar to chemo side-effects symptoms, very susceptible and vulnerable).

Detection of my serous papillary ec was delayed from Jan. to Oct. because they insisted on the d&c (which was done in April), and my prediction came true - d&c didn't yield any further info than all the previous in-office biopsies.

We did know, however, for years, via transvaginal ultrasound, that I had a lot of fibroids and one especially larger one, all blocking visibility - and they did want to go directly to hysterectomy, and there was a delay of 1.5 yrs for hysterectomy, even though I requested (based on my own research) hysteroscopy after the first half year, and they refused and insisted on d&c.  

January - I requested hysteroscopy. (I had found a good site online that explained the different diagnostic options).

Feb. - they did some biopsies and prescribed d&c (scant atypical cells, too little tissue, highly suspicious for cancer)

April - they did d&c

August - biopsy with sono at office visit was fine.

Oct - some minor brief but completely unusual spotting, a little bleeding, briefly.

        They were alarmed. They did hysteroscopy with biopsy, as described above; and sono on abdomen.

         Dx - serous papillary EC.

December - hysterectomy . The tumor was stage 1a. Many biopsies were done, many places.

Biopsies - one malignancy in peritoneum fluid.

Hope this helps people think about different possibilities that can occur in re diagnosis and d&c and hysteroscopies and biopsies.

NoTimeForCancer

WinnieH said:

NoTimeForCancer

I forgot to mention but now I recall that the gyn-onc mentioned a procedure to scape the uterine wall and take a tissue sample. It would be done under general aneasthesia. Does that sound like a D&C? He basically explained that it might show negative for cancer but it could be because he sampled a spot that didn't have it. So he thinks a hysterectomy is the safest route. I wonder if a PET scan would deliver comparable results to a D&C.

Thanks for mentioning this. I will follow up with his office to find out if I still need to do that tissue sampling.

Winnie, an endometrial biopsy

Winnie, an endometrial biopsy is where they only take a sample.  It can be done with or without anesthesia, as it can be painful for some.  Again, this only takes a little tissue and the doctor could miss a polyp that made be there. 

With a D&C, usually done under anesthesia, scrapes the entire uterus.  

As for a PET vs a D&C, a PET would not be able to test the polyp/tissue sample which you need to know what is or isn't there.

MAbound

Confused

If the doctor saw a bleeding mass during the colposcopy, the pap showed a high grade squamous intraepitheal lesion, the CT scan shows a thick endometrial lining and lymph node involvement and the gyn-onc's exam says it looks like cancer and he's recommending a hysterectomy why is everybody still talking about a D&C? What will it determine that the post-hysterectomy pathology report won't? The PET scan is important because it serves as a guide for the surgeon in how far to go in removing lymph nodes and omentum, but a D&C at this point seems like it wouldn't add to what they need to know  before the hysterctomy. Am I missing something? I went straight from the gyn doing the biopsy to the gyn-onc exam and then the radical hysterctomy. I had a MRI & PET scan pre-op so I have no experience with a D & C or the other tests mentioned. I could still see doing it if they weren't decided on the hysterectomey or not, but it seems like Winnie definitely is going to have a hysterectomy, so I'm confused as to what the point would be to subjecting her to this or the other procedures at this point.

Northwoodsgirl

WinnieH waitingBe

Winnie, For the life of me I struggle to understand why on earth these providers ( physicians and nurses) can’t figure out a better way to help a woman who is pending or newly diagnosed with gynecological cancer answer “what’s next” and make the arrangements! Ugghhh!!!!

Re: insurance authorizations- call the member services number on the back of your insurance card and IF pre-authorization for hysterectomy is required, you or the doctor‘s office can tell the health plan to expedite the review and authorization. Also you can google the name of your insurance company and enter “medical policies” or “medical coverage policies” and see all of the health plan’s  medical coverage policies-  ones that require prior authorization and also the ones that don’ t . (You may or may not know this.)  When you decide on the hospital and surgeon tell the health plan to tell you names of IN NETWORK anasthesiologists and radiologists that practice in the hospital. Otherwise you will be surprised at the out-of-network costs. Part of advocating for your self. 

Also you don’t need to wait a month for surgery. Once you see the surgeon get your surgery scheduled ( you can always cancel if your second opinion seems at better option). Care coordination in a comprehensive cancer center they would schedule all required imaging, labs, etc. simultaneously with getting you on the surgery schedule. First find out if the gyn/once surgeon you are seeing does the laparoscopic (robotic) Da Vinci procedure or not. In my case my surgeon felt it was best to do an “open” surgical approach.  I hope you can have the laparoscopic procedure. You may have Cervical cancer that moved up into your uterus or uterine that moved into your cervix. I had uterine that moved into my cervix. You won’t really know until you have the surgery and the pathologist report comes back.  Your treatment plan is driven from the pathologist report. Keeping you in my prayers! 

Lori

WinnieH

WOW, thanks ladies for all the love and advocacy advice

In the course of a few hours, the dr's office scheduled me for a D&C at a hospital this Thursday (2/8). It will be performed under general anaesthesia. I will follow up tomorrow to find more information:

1. Do I need the D&C if I am scheduled for a PET scan? (MAbound, trish, and NoTimeForCancer's posts) Also, did my biopsy results come in and what was the finding. It seems weird the dr. decided to do the D&C all of a sudden. I did email him about my cramps that increased in frequency and intensity this weekend so I do not know if that has any bearing on this.

2. Will the D&C include a hysteroscopy? (MugsBugs and Xtreme's posts).

3. Check with my insurance re in-network radiologist and aneathesiologst (Lori's post).

Just curious, is anyone located in the Los Angeles area and could recommend a dr for a second opinion?

 

 

HorseLvr

WinnieH said:

MAbound

My anxiety is through the roof but I will try to keep reminding myself that a month from surgery should be alright. I just feel like I had a late start on this journey when the spotting happened eight months ago and I didn't do anything until now. Thank you for suggesting research on preparation for the surgery. I hope I am eligible to have the hysterectomy done robotically instead of open. I am also a caregiver for my 86 yo mother that broke her hip last year with a heart condition so a shorter recovery time would be so helpful. I keep hoping for the "better" of two options (cervical vs uterine cancer) but it seems I have been getting the worser one. Ughh...

I am sorry you are having to

I am sorry you are having to go through this, Winnie. A month to get surgery is pretty good time. It's my understanding that it's 3 to 4 months here to get a hysterectomy. It's also my understanding that uterine cancer is slow growing, so try not to worry. Easier said than done, I know!

HorseLvr

XTREME said:

HYSTEROSCOPY. It's unusual to

HYSTEROSCOPY. It's unusual to have this done in doctor's office because it's very painful, but I did it, unfortunately, too late.

7 doctors over months, a few years, kept insisting I needed a d&c when all biopsies and the d&c I finally got returned with report: some atypical cells, too little tissue.

This was because there was a large fibroid blocking view of and access to tumor. Even though the hospital d&c uses cameras, I was told in retrospect, theirs are not as flexible as the ones in my doctor's office.

It's rare to find a non-hospital facility or doctor's office that offers hysteroscopy. I discovered this via online research a year ago, when I was afraid to have d&c (don't like or trust hospitals, and have too many other chronic illnesses, many with constant symptoms similar to chemo side-effects symptoms, very susceptible and vulnerable).

Detection of my serous papillary ec was delayed from Jan. to Oct. because they insisted on the d&c (which was done in April), and my prediction came true - d&c didn't yield any further info than all the previous in-office biopsies.

We did know, however, for years, via transvaginal ultrasound, that I had a lot of fibroids and one especially larger one, all blocking visibility - and they did want to go directly to hysterectomy, and there was a delay of 1.5 yrs for hysterectomy, even though I requested (based on my own research) hysteroscopy after the first half year, and they refused and insisted on d&c.  

January - I requested hysteroscopy. (I had found a good site online that explained the different diagnostic options).

Feb. - they did some biopsies and prescribed d&c (scant atypical cells, too little tissue, highly suspicious for cancer)

April - they did d&c

August - biopsy with sono at office visit was fine.

Oct - some minor brief but completely unusual spotting, a little bleeding, briefly.

        They were alarmed. They did hysteroscopy with biopsy, as described above; and sono on abdomen.

         Dx - serous papillary EC.

December - hysterectomy . The tumor was stage 1a. Many biopsies were done, many places.

Biopsies - one malignancy in peritoneum fluid.

Hope this helps people think about different possibilities that can occur in re diagnosis and d&c and hysteroscopies and biopsies.

I wonder why they wouldn't do

I wonder why they wouldn't do a hysteroscopy at the same time as the D&C? That is what my ob/gyn wants to do - hysteroscopy, biopsy and D&C all at once.

takingcontrol58

WinnieH said:

WOW, thanks ladies for all the love and advocacy advice

In the course of a few hours, the dr's office scheduled me for a D&C at a hospital this Thursday (2/8). It will be performed under general anaesthesia. I will follow up tomorrow to find more information:

1. Do I need the D&C if I am scheduled for a PET scan? (MAbound, trish, and NoTimeForCancer's posts) Also, did my biopsy results come in and what was the finding. It seems weird the dr. decided to do the D&C all of a sudden. I did email him about my cramps that increased in frequency and intensity this weekend so I do not know if that has any bearing on this.

2. Will the D&C include a hysteroscopy? (MugsBugs and Xtreme's posts).

3. Check with my insurance re in-network radiologist and aneathesiologst (Lori's post).

Just curious, is anyone located in the Los Angeles area and could recommend a dr for a second opinion?

 

 

D&C

Winnie,
A D&C is considered the gold standard for diagnosing endometrial cancer.

I had an endometrial biopsy first, which was only partially conclusive, so I got the D&C,
which confirmed Stage 3b, Grade 3 endometrioid adenocarcinoma. A D&C gets a 
much better sampling of cells from the uterus. I also had polyps removed that
were tested.

I don't believe there is a need for a hysteroscopy when you are getting a D&C.

Best of luck tomorrow.  Just take it a day at a time.

Takingcontrol58

WinnieH

Thanks Takingcontrol58

I spoke with the dr. today and he did receive the biopsy taken by the GYN and it confirmed cancer so that is why he wants to do a D&C. I asked about the hysteroscopy and the dr. said he does not recommend it since it requires a flush and that could push cancer cells into the fallopian tubes, etc.

He also prescribed some Tramadol to help me manage my back pain. Fortunately it's working so I can function and hopefully get more than one hour of sleep tonight.

Many thanks to you lovely ladies.

Winnie

Northwoodsgirl

Glad things are getting into place I

WinnieH , So happy things are getting scheduled so you are moving ahead for you. I live in Minnesota. I am not sure if any of the other women live in the Los Angeles area. You might want to google the National Cancer Institute to see where in CA they have credentialed comprehensive cancer centers. These credentialed centers typically do cancer research and have great care coordination between all of the specialists who will be involved with your cancer treatment plan. In MN the University of MN Women’s Cancer Center is credentialed by the National Cancer Institute. If I can find the hyperlink I will post it. 

Lori

saltycandy13

Dear Winnie

I've been reading your posts and haven't replied until now.  Reason is:  I didn't know what to say.  Is the Tramadol working for your back pain?  I used that for migraines with an infusion and it didn't help me but that was for headaches.

I wish you much luck.  And that God smiles upon you.  You need your rest.  Maybe something else to help?  Just my opinion

Karen

Northwoodsgirl

4 NCI designated oncology centers in Los Angeles

Looks like the NCI has 4 designated comprehensive cancer centers in Los Angeles area. I am using my iPhone and can’ t quite figure out how to insert the hyperlink to this website without losing this text box. I think the address is just cancer.gov