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WinnieH
Posts: 21
Joined: Feb 2018

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's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

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
Posts: 871
Joined: Jun 2016

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
Posts: 21
Joined: Feb 2018

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.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

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.

WinnieH
Posts: 21
Joined: Feb 2018

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...

HorseLvr's picture
HorseLvr
Posts: 102
Joined: Nov 2017

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!

MugsBugs
Posts: 107
Joined: Jan 2018

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!

XTREME
Posts: 17
Joined: Feb 2018

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.

HorseLvr's picture
HorseLvr
Posts: 102
Joined: Nov 2017

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.

WinnieH
Posts: 21
Joined: Feb 2018

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
Posts: 21
Joined: Feb 2018

Will do, thank you for the great advice.

txtrisha55's picture
txtrisha55
Posts: 684
Joined: Apr 2011

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

MAbound
Posts: 871
Joined: Jun 2016

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
Posts: 536
Joined: Oct 2009

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
Posts: 21
Joined: Feb 2018

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?

 

 

takingcontrol58
Posts: 243
Joined: Jan 2016

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
Posts: 21
Joined: Feb 2018

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

MAbound
Posts: 871
Joined: Jun 2016

I still don't understand the purpose of a D & C is if you have confirmed cancer and are going to have a hysterectomy. What will it determine that won't be found during the post-hysterectomy pathology studies? I'm wondering if there aren't too many cooks in the kitchen.

When my gyn referred me to a gyn-onc, she stepped out of the picture to let him run the show. It might not be a bad idea to call the gyn-onc you were referred to to ask if he/she thinks you need to have a d & c at this point if the cancer and hysterectomy are certainties.There's always some degree of risk involved with any invasive procedure and anesthesia, so they should never be done unless absolutely, vitally necessary to your care.This might be a case of different doctors not communicating with each other and you need to be your own advocate here and make sure you really need to have this procedure.

A D & C might be the gold standard for diagnosing that you have endometrial cancer, but you already know that you definitely have cancer. The post-hysterectomy pathology report will be the final word on what type of cancer you have, where it originated, the stage, and grade and that trumps a D & C and makes me question why you are being subjected to it by the gyn doctor. The gyn oncologist is the superior specialist for women's cancers whereas your gyn doctor is the generalist in terms of expertise in that area, so that's why I'd get his opinion about having the D&C or not.

Sorry that I'm being such an alarmist about this, but I can't see you undergoing a procedure like this if it doesn't contribute anything that makes it worth the potential risks and discomfort. And I'm not even mentioning what it might cost you if your insurance doesn't cover 100% of the cost or the hassle of finding someone else to be with your mother or be there to take you to and from the procedure.

Northwoodsgirl
Posts: 536
Joined: Oct 2009

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
Posts: 167
Joined: Dec 2017

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
Posts: 536
Joined: Oct 2009

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

WinnieH
Posts: 21
Joined: Feb 2018

The dr. said the D&C will help determine if I need a hysterectomy or radical hysterectomy.

The Tramadol seems to lessen the pain from an 8-9 to about 2-3. At least I can drive and do daily activities again. Keeping fingers crossed for a restful night's sleep. I'm limited in terms of what i can take for the pain since I will have surgery soon. Can't take certain OTC ones because they can cause complications (no Aleve, aspirin, Motrin).

I found the 4 NCIs in Los Angeles and my dr. is with USC Norris. *At least one silver lining in this jourmey so far.

HorseLvr's picture
HorseLvr
Posts: 102
Joined: Nov 2017

Glad you are getting some pain relief!

CheeseQueen57's picture
CheeseQueen57
Posts: 813
Joined: Feb 2016

I’m glad you’re getting some pain relief but be careful with the Tramedol as it is an opioid. You might not want to go there just yet. 

MAbound
Posts: 871
Joined: Jun 2016

Thanks for the explanation, Winnie and I'm so glad you asked your doctor, but I'm going to go out on a limb here and push a bit more. Please don't get mad at me, but this is what's going through my head. 

Was it the gyn doctor or the gyn-onc that gave you that explanation? Is it your gyn doctor who would be doing the hysterectomy or would it be the gyn-onc?

If the gyn-onc is going to do the surgery, why would the gyn be doing a d & c to determine between doing a regular vs. radical hysterecomy? Shouldn't that be the surgeon's decision if it's going to be the gyn-onc doing it?

How does a d & c determine which type of surgery? Can it see what's going on outside the uterus better than the PET scan you are going to have can?

Again, I'm sorry to be such a pill about this, so just take these questions as something to chew on. I have alarm bells going off in my head that you don't need this procedure, but I'm certainly not qualified to say anything. It never hurts to make your doctors explain things to you and be certain that everyone involved is communicating with each other. It's important to be your own advocate through all of this, so keep those doctors on their toes!

WinnieH
Posts: 21
Joined: Feb 2018

Thank you for advocating so hard for me. I greatly appreciate it.

It is the gyn-onc that gave the explanation and he will be performing the surgery. I will ask the gyn-onc what is the difference between the results from a D&C and a PET scan, given that I will have a total hysterectomy anyway.

MAbound
Posts: 871
Joined: Jun 2016

I guess I'm feeling better about the D & C now that I understand that it's the gyn-onc that wants it and he'd be the one doing your surgery and guiding your care afterward.

It doesn't matter if i don't understand what it adds to the knowledge that enables him to do the best job possible for you as long as he does and feels it's necessary to the overall picture that guides him. My experience was different skipping that procedure.  Different doctors have different practices and philosophies and here's a pefect instance of that. There are always so many different scenarios for the treatment of cancer, surgery included.

Wishing you the best as you go through all of this and hoping I didn't add to you anxiety with my concerns. 

pinky104
Posts: 574
Joined: Feb 2013

When I had spotting, I had a couple of different ultrasounds and a polyp was located.  I had a D&C in which my cancer was found.

I had to wait a month for my surgery after meeting with the GYN/onc for the first time.  In the meantime, he sent me for a CT scan at a different hospital where I worked.  I never had a PET scan at that time.  I was able to see the report of what the CT scan found and I could tell my cancer was extensive.  It had spread to both ovaries, the omentum, and the small intestine.  In fact, the report on the omentum said it had a cake-like formation, which to me sounded like a lot of cancer.  I tried to call his office to talk about it but couldn't get through his guard-dog office staff. I left him a message with them, but I doubt he ever got it.  I showed up on the day of surgery and was being prepped for a robotic surgery when my GYN/onc showed up.  He told me he had just looked at my CT scan from the other hospital that morning, and that he wouldn't be able to do my surgery robotically.  The cancer was too extensive.  Needless to say, that was a bit of a shock although I'd been suspicious that would happen.  I was expected back at work in 2 weeks, but I never did go back.  By the time I finished my cancer treatment, I was 62 years old and eligible for Social Security.   My surgery and chemo were successful even though I was found to have stage IVb UPSC.  I had just about 7 years of remission when it was found again last year after it grew extremely rapidly.  That meant more surgery and a different chemo drug plus one of the old ones.  Again, I'm in remission.  My GYN/onc suspects I'll get it back again in another 5 years or so, but hey, I'm alive. It hasn't been a death sentence for me even though I had the month wait for surgery the first time and even though it was the highest possible stage.  I don't know what the future will bring, but I'm 69 years old, so who knows how many years I'll have left anway?  My little brother (5 years younger) died at 57 from a heart attack, my father lived to 84 in spite of prostate cancer, my mother lived to 90 in spite of two different breast cancer occurrences almost 10 years apart, my maternal grandmother had breast cancer in both breasts at the same time and lived to her mid 70's, and my paternal grandmother was healthy and lived to 95.  Anything might happen, but the family seems to do pretty well at surviving and being cured of cancer.  Everyone who had it died of something else quite a few years later.

Northwoodsgirl
Posts: 536
Joined: Oct 2009

I admire your attitude with all you have been through. None of us know when we will be called home. My 88 yrs old Dad probably has colon cancer (still lives independently). His colon surgeon is pretty sure a polyp my Dad has is the source of bleeding despite the biopsy coming back as negative for cancer. My Dad has a 30% chance of never living in his own home again if he has a colectomy to remove the part of his sigmoid colon that has the polyp that the surgeon thinks is a slow bleed. My Dad has chosen to just live his life one day at a time. My Mom died of uterine cancer at the age of 72 thirteen years ago. Yes, none of us know what our “expiration date” is. My Dad’s cardiologist told my Dad not to have the colon surgery explaining that my Dad would probably die of some other cause before the cancer would take his life. My Dad is choosing quality of life over extended life at all costs -not an easy decision no matter what ones age. Thanks for sharing your thoughts! 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

Northwoodsgirl, my mom found out she had cancer and chose not to do anything.  She found out in 2010 (she was 85) and lived on her own July 9, 2017 until she went in to the hospital and then an assisted living for about six more weeks.  In the final weeks she said to me, "No chemicals, no stiches, no regrets".  I told her the my sisters and I completed supported her decision.  That there was no guarantee she would have lived this long if she had decided to go through with everything.  I know she also didn't want to be a burden to us - she wanted us to live our lives and not make decisions based on her. 

I know my mother lived on her own and loved listening to the radio and reading the newspaper.  That was her quality of life.  It cannot be an easy decision but, like your dad, it is there decision and we are right to support it - as hard as it is for us.  It can be hard and you are in my prayers.

Northwoodsgirl
Posts: 536
Joined: Oct 2009

Thanks so much for sharing your experience with your Mom’s decision at 85 yrs of life to choose quality of days for as long as possible. Like my Dad I think they know that they don’ t want to burden their children and they know they want to live in their own home as long as possible. It makes my heart warm to know others have gone through the same journey with their parent. My Dad’s cardiologist actually his father passed away from colon cancer at an advanced age and my Dad’s cardiologist doesn’ t think Dad would do well with surgery. So we will try to live each day to it’s fullness! Thank you so much for keeping Dad and I in your prayers....it means a lot to this Christian. 

Lori

WinnieH
Posts: 21
Joined: Feb 2018

Pinky, I'm so sorry you have gone through so much but you are a fighter and I know you will continue to beat back this horrible beast.

I went to the hospital for my D&C and biopsy yesterday. As I was getting prepped in the OR, I started to leak several huge blood clots (sorry for the gory details) and there was just red everywhere. It freaked me out but the nurses were so kind and understanding in cleaning me up and keeping me calm. The gyn-onc decided not to scrap the utereus to avoid more bleeding but did do a biopsy of the cervic and cauterized a couple spots that were bleeding. I was out of the hospital after a couple hours with no negative side effects from the general anesthesia.

So now I am schedule for a hysterectomy or radical hysterectomy on Feb. 23. I'm praying the biopsy results will not require a radical hysterectomy. The gyn-onc said I will need a catheter for a couple weeks if I need a radical hysterectomy and that sounds scarier than the surgery itself.

 

MugsBugs
Posts: 107
Joined: Jan 2018

The hardest part is waiting!  I will keep you in my prayers that you wont require full abdominal surgery.  Don’t be afraid of the catheter, you won’t even feel it!  I was actually happy that I had it after surgery because there wasn‘t any stress about getting out of bed, especially since they will pump you full of fluids.  For me, this experience has been much easier than I anticipated pre-hysterectomy (post 1 1/2 weeks).

Good luck - you are in our prayers!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

Winnie, they don't like to call it 'radical' anymore and go with the more, PC, "complete".  Whatever - it is all the end in the same.  With that said, lots of us have had a complete hysterectomy and I don't know how many have had to have a catheter for weeks afterwards.  Are you having your surgery as a DaVinci (robotic) surgery or a traditional, abdominal incision?  Maybe that is why he is saying a catheter????  My sister had a hysterectomy via incision and did not have a cath.  

Maybe the other ladies can chime in.  The main thing is you have to pee and/or poop before they let you go no matter what type of surgery you have.  

CheeseQueen57's picture
CheeseQueen57
Posts: 813
Joined: Feb 2016

I had an abdominal incision and had a catheter for a couple days. They pulled it before I went home. 

HorseLvr's picture
HorseLvr
Posts: 102
Joined: Nov 2017

Do you know why certain types of hyst. require catheter and others don't? That is something I am dreading if I have to have a hyst. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

For surgery they put it in when they knock you out and you wake up with it - they don't want you urinating everywhere.  They hook you up to an IV and that fluid has to go somewhere. 

I was supposed to pee before they would release me from the hospital but my bladder didn't wake up so they had to cath me once.  I was drinking a lot of water to get the anethesia out of my system and had my braiin tell my bladder to work!  I didn't go as much as they wanted but it was my goal when I got home and I got up all the time.  

MAbound
Posts: 871
Joined: Jun 2016

Well, it sounds like the D & C was worth it if it did nothing else besides stop the bleeding for you for a while before you go in for your surgery. I had the full monty with a total abdominal radical hysterectomy and I had a catheter in for 4 weeks after my surgery. It's more of a bother than anything else because you have to remember it every time you want to change position in bed or take it with you whenever you walk around. They put it in during surgery, so at least you're unaware when that happens! Good luck on the 23rd! I'll be praying for you to have the easier option.

WinnieH
Posts: 21
Joined: Feb 2018

Thank you for your kind thoughts and prayers. I'm trying to do as much prep and research as possible before the surgery. Ok, I can deal with a catheter.

HorseLvr's picture
HorseLvr
Posts: 102
Joined: Nov 2017

Have you seen the hyster sisters website? It's very informative and has forums, too. I'm not sure if we can post links but you can easily find it with google. Good luck with your surgery, hope all goes well.

WinnieH
Posts: 21
Joined: Feb 2018

I've been combing through the forum for advice in preparation for surgery. My hip/back is still hurting so I have limited time on the computer as I can't sit for very long. Here's what I have so far, copied from other threads. I would greatly welcome more advice from everyone. thanks in advance.

 

REQUEST geonomic tumor testing

REQUEST tumor assay

Eat a light diet over the next few days and if needed take a laxative

Pillows for the trip home

If open abdominal, get a velcro wrap to keep staples in place

MugsBugs
Posts: 107
Joined: Jan 2018

The belly binder is a must even with laparoscopy.  It is much easier walking around.  Get it a little big.  I ordered it beforehand and put it on and it was too big.  However when I got home from the hospital it almost didn’t fit from the swelling.  It took a few days for the swelling to recede.

If you have someone that can spend the night the first night and the hospital allows it -I would recommend having them stay.  I sent my husband home to get some sleep because I was feeling good but I regretted it the next morning.

Get some gas-x.  The gas can be brutal.   I am almost 2 weeks post surgery and still taking it occasionally.  It really helps!

My doctor had a complete prep for me before surgery.  The prep was the same as a colonoscopy.  I wasn’t allowed to eat for 36 hours before surgery.  By the time I ate it had been over 56 hours and they forgot to order me breakfast or coffee (thus the advice to have someone stay with you).  I can do without food but coffee is a different story.

Take the drugs!  The Pain wasn’t that bad.  They gave me Percocet but I didn’t want to take them.  I took tylenol.  I wasnt in much pain but couldn’t get comfortable and after 12 hours took the percuset.  I slept like a baby and was perfectly comfortable.  I took it for about 5 days.  Now there is no pain but coughing and/or sneezing is still uncomfortable.

Last try not too stress ( I know easier said than done) - I found my imagination was a lot worse than reality and I was pleasantly surprised after surgery!

Let us know how you are doing.  Keeping you in prayers!

 

Betty

 

 

 

takingcontrol58
Posts: 243
Joined: Jan 2016

Winnie,
Just wanted to give you a few more tips prior to surgery.

1) Genomic tumor testing- I would highly recommend Foundation One- they test
325 genes and you want to be sure to be tested for all the gene mutations related
to endometrial cancer. The genes they test also include the ones for Lynch Syndrome
(inherited condition that can lead to EC). They are one of the best firms out there.

2) blood tests- Yes, you mentioned CA 125. Definitely get a baseline test.
I highly suggest you also test for HE4 as well. It is a better marker for recurrence than
CA125 so you will have a baseline number prior to surgery so you will know if it is valid
marker for you. 

Also suggest some other key tests which most doctors do not order, but I believe they should:
1) Serum insulin- key driver of many cancers, including EC
2) Insulin Growth Factor Hormone -1 -key driver of endometrial and breast cancer-my
levels were double what they should be when my cancer metastasized- it is often
raised at the diagnosis of EC, but doctors don't test for it. Women always define breast
cancer in relation to estrogen.  With EC, you need to measure both insulin and estrogen.
3) Ferritin (test for iron stores) - a key driver of all cancer- every cell in the body
uses iron to divide, and cancer cells are dividing rapidly.  Women in menopause
are at higher risk of high iron levels because we no longer shed blood each month,
though I don't think you are in menopause.  I had very high levels and had no idea.
It is not a test that doctors regularly order.
4) Glucose- I'm assuming this would be tested as part of the standard blood panel.
Key driver of cancer. Was discovered in the 1930s.
5) Vitamin D- it is very important to have strong levels of Vitamin D. Low levels can
lead to cancer.  If yours are low, you should take a supplement.
6) Estradiol (estrogen)
7) Progesterone

There are many more blood tests I track every 3 months-you can add more afer surgery
later, but at least these tests will give you information on some of the key growth
factors for endometrial cancer, so you know if you have them.  if you do, you will have
to address them.

3) I recommend you start to look for a good integrative oncologist or naturopath who
can put you on a supplementation plan and treat any of your underlying health issues
that may have led to your cancer. Oncologists treat the tumor, not the conditions that 
led to the tumor. It is important to have a more integrative approach in healing cancer.

4) If you don't follow a healthy diet, I would suggest you start now. Try to eat
organic fruits and vegetables, grass fed beef and chicken, limit your sugar and
processed food, drink purified water. And stop drinking alcohol if you do.  I say
all this because I was a sugar junkie- the two months after my surgery before I
started treatment, I continued to eat my usual diet and my cancer quickly
metastasized to 34cm of new tumors.  it was my bad diet that contributed to
my high insulin, IGF-1 and ferritin levels.

5) If you need to lose weight, I believe that is one of the most important things
you can do, as fat cells are hormone factories and one of the reasons that endometrial
cancer is one of the fastest growing cancers. And having excess weight leads to
high levels of hormones and conditions like diabetes, which is a leading cause of many
cancers, including endometrial cancer.

6)  I would like to make one last suggestion. Boost your immune system. The anesthesia
from surgery compromises your immune system and you need your immune system to
fight all those cancer cells that get loose during surgery (that's why they give you chemo after 
surgery).  The best supplement booster is Maitake D fraction.  It is a liquid you can just add
to your daily tea or smoothie or whatever.  Maitake D fraction (by Mushroom Wisdom) is
a medicial mushroom. They are known as strong immune system boosters.  There is much
scientific information on Maitake D fraction. I've been taking it for 3 years now and have
remained in remission.

Unfortunately, i did not know all these things prior to surgery but hopefully you can be
better prepared.

Takingcontrol58 

 

 

 

 

 

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

I know you're on Metformin and I'm reading that Maitake D can interact with that. Have you had any problems thus far?

takingcontrol58
Posts: 243
Joined: Jan 2016

I've been on Maitake D fraction and the metformin for nearly 3 years now.  Maitake D was one
of the first supplements I started using since I just put it in my daily smoothie. The integrative
oncologist who put me on both had a phd in molecular biology, so I trusted all the supplements he
recommended for me, that I started while I was getting chemo.

Never had any issues with either the metformin or Maitake D.

Takingcontrol58

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

Thanks, TakingControl58 ! B

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

I had a large incicsion but thankfully the catherter was in less than 24 hours...I'd say maybe 12...

ask your surgeon about pain management---sometimes they place tiny catheters that deliver pain medication (numbing type not narcotic) into the abdominal wall to control pain post surgery. My surgery got pushed until 7 at night (was supposed to be at 2-4 pm but my hospital is a level 1 trauma center so the OR's were busy that day) and I had to have the pain blocks put in the next day. They helped tremendously. The pain blocks stayed in from Tuesday-Sunday (my surgery was on Monday). My son had the same sort of pain block after ACL surgery. The medication is delivered throught tiny tiny catheters and there is a boulous of medication that keeps it delivering continuously. When the boulous is empty you just pull the little thread-like catheter out (it is inserted into your abdominal wall...you cant feel it). 

if you have robotic surgery ask if they can give you a pain block shot in recovery...I just had hernia repair surgery and they did that---I was in recovery and the pain team came in and gave me a shot in each side of my abdomen---it was immediate relief and helped a lot. It doesn't last as long as the boulous/catheter type but with laproscopic the pain is not as intense or bad...

in any case---discuss this with your surgeon...it really makes a difference and I found I needed a lot less oral pain medication (and I am allergic to most so its an issue) and I think it aided in my getting up and about faster...

Other post op help:

a wedge pillow for your bed (makes it more comfy to lay in bed---it gives you a nice angle like a hospital bed)...buy online or at Bed BAth and Beyond

a cooling pillow to sleep on (post hysterectomy will help with night sweats)

cool cotton gowns that are easy to put on and take off

a belly binder for support (I used it post hernia surgery too...it really helps)

and DO NOT lift anything heavier than your phone...3 weeks post open incision hysterectomy I was back to lifting my cast iron pots and pans and THAT is how I got my hernia...a huge "3rd boob" size hernia...so if you have the open surgery do not lift anything heavy at all...

be sure to have GasX, stool softener, and glycerin suppositories on hand at home for post surgical gut issues...

good luck!!!!

HorseLvr's picture
HorseLvr
Posts: 102
Joined: Nov 2017

If you want something to raise the head of your mattress and you want to use it long term, I highly recommend the mattress genie. I've had one for years and I love it, and it's really great for when I have pneumonia (I'm susceptible to it) as laying flat sends me into a coughing fit. Once again, I'm not sure if I can post a url but googling 'mattress genie' will get you their website.

 

MAbound
Posts: 871
Joined: Jun 2016

Whether you have robotic surgery or abdominal, it's really important to get up and move around ASAP after your surgery to get your intestines to wake up and start moving again after the drugs they give with the anesthesia to paralyze them (so they can do the surgery safely). If you need help, don't wait for it...demand it! Not moving around can lead to a condition called Ileus and trust me, you don't want to go through that (I did). No matter what's tying you down to the bed or how uncomfortable you may be, that is a critical thing and given how short staffed hospitals can be you may have to be a squeeky wheel to get help you need it.

WinnieH
Posts: 21
Joined: Feb 2018

I've got my list and checking it off as I gather all the goodies....T minus nine days.

Quick question on stool softener - I've only used Miralax once and that made everything go whoosh. I've never used other stuff. Any suggestions on a brand that doesn't have much side effects? 

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