Ok, I'm definitley in this sorority now

CheeseQueen57

Hi All, CheeseQueen here and here is my story so far:

Post-menopausal for 20 years, had early menopause at age 39 (don't be deceived by my profile picture, that was in 1976!).  In January, started having bleeding.  Had been to gyno in November, no problems. 

• 1/5/16  Gyno retired in December, had to see colllegue in practice who did endometrial biopsy and said to wait 2 weeks to get transvaginal ultrasound.  And BTW, just found out that previous gyno had not done PAP in 3 years.  All the while, I thought he was doing a PAP each year when I went in for my annual exam (note to self, always follow up on results!)!

• 1/15/16 Endo biopsy report states predominately blood and rare fragments of endometrium with focal stromal breakdown suggesting repeat sampling and follow up.  So in other words, poor sample quality.  Waste of time, effort, and pain.  I don't know why they even do these anymore.  So I wasted the month of January on this and waiting to do transvaginal ultrasound

• 1/26/16: Transvaginal and abdominal ultrasound results indicate endometrial stripe 1.3 cm, 3.0 cm righ adnexal mass, perhaps pendunculated right uterine fibroid but not sure.  Diffuse uterine adenomyosis.  Suggests contrast pelvic MRI
• 2/3/16: MRI indicates slightly enlarged uterus, abnormal endometrial stripe and thickened consistent with adenomyosis.  Appears to be right-sided pedunculated fibroid.  Small amount of free fluid within the pelvis. Ovaries unremarkable.  Further eval warranted
• 2/1/16. CA 125 in normal range at 20
• 2/6/16 Had D&C and Hystoscopy and got results on 2/18/16: high grade endometrial adenocarcinoma which is more likely of endometroid type based on pathology, but more specific diagnosis deferred to surgical speciman
• Scheduled for CT scan 3/7/16
• Scheduled for DaVinci surgery at Fox Chase 3/17/16 (Happy St. Patrick's Day!)

Appreciate all and any advice as I embark on this journey.  I have had intermittent pain in my lower right flank through this process.  Doctor says could be the fibroid, but I never had any problems with fibroids in the past and ultrasound 7 years ago showed no evidence of a fibroid.  I did have some bleeding 7 years ago and had ultrasound and biopsy which apparently showed nothing.  Now I'm kinda wondering if I should have pushed a little harder at that time.  Who knew?

I feel I'm finally in good hands at Fox Chase.  But I am concerned that this might not just be as easy as just surgery.  At the very least, will require radiation therapy of some sort.  My family had a trip of a lifetime scheduled for April 12 to Tuscany that of course, I'm now out of.  Very upsetting.  They are trying to decide who, if any of them will still go.  Feel like everything is on hold until results come back after surgery. 

Thanks for forum to vent.  Sometimes that's all we need, isn't it?

CheeseQueen

 

EZLiving66

I'm sorry you had to join us

I'm sorry you had to join us but you're among friends here.  Yup, it certainly does put your life on hold, doesn't it?  The first few months are especially rough as everything gets sorted out.  I had a total hysterectomy on September 30th and danced out of the hospital the morning of October 1st.  I never even had to take a pain pill.  That was the easy part.

I have UPSC, Stage II, Grade 3.  I made it through three rounds of chemo before the wheels fell off the bus.  As I've witnessed on this site, everyone had different reactions to chemo and radiation.  

I'm glad you found a good cancer team that you trust.  It seems that women near large cities have many more choices than those of us in small towns.  

Good luck with everything and keep us posted about how it goes!!!

Love,

Eldri

CheeseQueen57

EZLiving66 said:

I'm sorry you had to join us

I'm sorry you had to join us but you're among friends here.  Yup, it certainly does put your life on hold, doesn't it?  The first few months are especially rough as everything gets sorted out.  I had a total hysterectomy on September 30th and danced out of the hospital the morning of October 1st.  I never even had to take a pain pill.  That was the easy part.

I have UPSC, Stage II, Grade 3.  I made it through three rounds of chemo before the wheels fell off the bus.  As I've witnessed on this site, everyone had different reactions to chemo and radiation.  

I'm glad you found a good cancer team that you trust.  It seems that women near large cities have many more choices than those of us in small towns.  

Good luck with everything and keep us posted about how it goes!!!

Love,

Eldri

Love Seeing your Smiling Face

Hey Eldri:

I just love seeing your smiling face on your posts.  Makes my day!  Must be that ole' midwestern charm.  I'm a Michigan gal myself (hence the Cheese Queen!) but now find myself in the Philly area for the past 30 years (what we'll do for love!).  I just love your profile picture!

Kvdyson

Sorry to have to welcome you

Hi CheeseQueen, I agree with Eldri that we're so sorry to have to meet under these circumstances. You'll find a lot of support here as you travel along your journey. At this stage, my two recommendations are:

1) be sure that you receive copies of all of your pathology reports for your files. I ended up getting 3 opinions on my diagnosis before settling on a specific treatment. It went pretty quickly because I was able to provide copies of the reports directly. Hopefully your experience will be more straightforward!

2) be sure that your surgeon is an gynecological-oncologist. They are the experts in this field and will ensure that your surgery is as effective as possible.

Good luck and please know that we're all routing for you!

Wishing you strength and good health,
Kim
Debulking Surgery 10.5 cm (TAH & BSO, 14 lymph nodes excised) - Sept 2015; 47 years old
Dx: Uterine carcinosarcoma (MMMT) Stage 1b, Grade 3 - Sept 2015
Frontline: Chemo (Taxol-day 1 & Ifosfamide/Mesna-days 1-3) - 6 rounds - Dec 2015 - June 2016
Radiation - external, 28 treatments over 6 weeks - Feb - Mar 2016

Unknown

Hi

Things might not be as bad as you think.  If it's endometrial cancer, low stage, although I know you said high grade,  you may not need anything more than follow up.  If you are having Da Vinci surgery, I (like Eldri) didn't have pain after surgery.  I know it's a little iffy to know about these things, but I could have went on a trip of a lifetime the next week after surgery.  Even though I have stage 3c grade 3, my chemo doctor visit wasn't until two weeks laster, then another two weeks or more until I started chemo.  Are you able to talk with anyone at your doctors about still making the trip (assuming you haven't canceled your part)?  Sorry to hear the word cancer from anyone, but we're all sloughing through treatment, some have more than others.  Hugs Nancy

CheeseQueen57

Kvdyson said:

Sorry to have to welcome you

Hi CheeseQueen, I agree with Eldri that we're so sorry to have to meet under these circumstances. You'll find a lot of support here as you travel along your journey. At this stage, my two recommendations are:

1) be sure that you receive copies of all of your pathology reports for your files. I ended up getting 3 opinions on my diagnosis before settling on a specific treatment. It went pretty quickly because I was able to provide copies of the reports directly. Hopefully your experience will be more straightforward!

2) be sure that your surgeon is an gynecological-oncologist. They are the experts in this field and will ensure that your surgery is as effective as possible.

Good luck and please know that we're all routing for you!

Wishing you strength and good health,
Kim
Debulking Surgery 10.5 cm (TAH & BSO, 14 lymph nodes excised) - Sept 2015; 47 years old
Dx: Uterine carcinosarcoma (MMMT) Stage 1b, Grade 3 - Sept 2015
Frontline: Chemo (Taxol-day 1 & Ifosfamide/Mesna-days 1-3) - 6 rounds - Dec 2015 - June 2016
Radiation - external, 28 treatments over 6 weeks - Feb - Mar 2016

Thanks Kim

Thanks for the insight, Kim.  Agree, I've been collecting all my reports for my own files and plan to get 2nd and maybe 3rd opinions on any follow up care necessary because from what I see, that seems to be where there is potentially differences of opinion and not clear guidelines.

Surgeon is gyn/oncol at Fox Chase.  My gyn wanted to do the surgery with a gyn/oncol standing by to stage....I said no, no, no wait a minute here....since I am in the Philly area with great medical institutions,  no way was I going for that.  I'm very comfortable with surgeon who has >30  years experience and pioneered minimally invasive surgery. But from what I understand, I think surgery will be the easy part of this.

I may be putting the cart before the horse here, but I'm thinking of getting the shingles shot (even though I'm not quite 60 yet).  Has anyone had a problem with shingles when going through their therapy?  I'm hopeful that I won't need chemo, but of course, I just don't know yet.

Thanks, in advance, I may post the shingles thing separate.

 

CheeseQueen57

unknown said:

Hi

Things might not be as bad as you think.  If it's endometrial cancer, low stage, although I know you said high grade,  you may not need anything more than follow up.  If you are having Da Vinci surgery, I (like Eldri) didn't have pain after surgery.  I know it's a little iffy to know about these things, but I could have went on a trip of a lifetime the next week after surgery.  Even though I have stage 3c grade 3, my chemo doctor visit wasn't until two weeks laster, then another two weeks or more until I started chemo.  Are you able to talk with anyone at your doctors about still making the trip (assuming you haven't canceled your part)?  Sorry to hear the word cancer from anyone, but we're all sloughing through treatment, some have more than others.  Hugs Nancy

Trip

Thanks for the encouragement Nancy.

We haven't cancelled the trip yet.  Fortunately, my credit card will cover the cost of cancelling for my husband, son, and me, but NOT my son's girlfriend.  My surgeon was not too optimistic about me making the trip.  My main concerns were an 8 hour flight (blood clot risk?), not having enough energy to walk around a lot ( which I actually could deal with), or having some kind of medical emergency while in the wilds of Tuscany.  I don't think we would need to cancel until the last minute, frankly. 

How long does it usually take to get the pathology reports back after surgery?  My surgery is scheduled for March 17 and our trip is scheduled for April 12.  Perhaps there is still hope I can go

Editgrl

CheeseQueen57 said:

Trip

Thanks for the encouragement Nancy.

We haven't cancelled the trip yet.  Fortunately, my credit card will cover the cost of cancelling for my husband, son, and me, but NOT my son's girlfriend.  My surgeon was not too optimistic about me making the trip.  My main concerns were an 8 hour flight (blood clot risk?), not having enough energy to walk around a lot ( which I actually could deal with), or having some kind of medical emergency while in the wilds of Tuscany.  I don't think we would need to cancel until the last minute, frankly. 

How long does it usually take to get the pathology reports back after surgery?  My surgery is scheduled for March 17 and our trip is scheduled for April 12.  Perhaps there is still hope I can go

I feel your pain

about having to possibly cancel a trip.  10 years ago I badly sprained my knee two weeks before a friend and I were supposed to leave for Australia, also a trip of a lifetime.  I was devastated, because my trip was to be a very active trip... biking, kayaking, diveboat.  There was no way I could have made that trip except on crutches, and I cried when I had to cancel.  

Now, I can say that a month after my hysterectomy, I was out on the dance floor and getting around quite fine.  However, I am not sure that I would have opted for a full-blown European vacation.  If you have the flexibility to cancel at the last minute and still get most of your money back, I'd say wait.  Listen to your body after surgey and see how you feel then about that long flight and what you may or may not feel like as far as energy level and activity. 

In my case, the pathology was back in about a week, though my follow-up appointment wasn't until a few weeks after that.

Chris

Editgrl

CheeseQueen57 said:

Thanks Kim

Thanks for the insight, Kim.  Agree, I've been collecting all my reports for my own files and plan to get 2nd and maybe 3rd opinions on any follow up care necessary because from what I see, that seems to be where there is potentially differences of opinion and not clear guidelines.

Surgeon is gyn/oncol at Fox Chase.  My gyn wanted to do the surgery with a gyn/oncol standing by to stage....I said no, no, no wait a minute here....since I am in the Philly area with great medical institutions,  no way was I going for that.  I'm very comfortable with surgeon who has >30  years experience and pioneered minimally invasive surgery. But from what I understand, I think surgery will be the easy part of this.

I may be putting the cart before the horse here, but I'm thinking of getting the shingles shot (even though I'm not quite 60 yet).  Has anyone had a problem with shingles when going through their therapy?  I'm hopeful that I won't need chemo, but of course, I just don't know yet.

Thanks, in advance, I may post the shingles thing separate.

 

Acyclovir

I also had not had the shingles vaccine prior to chemo, and because of timing, I couldn't do the vaccine because it's a live virus.  So my oncologist had me use acyclovir as a prophylactic.

CheeseQueen57

Editgrl said:

I feel your pain

about having to possibly cancel a trip.  10 years ago I badly sprained my knee two weeks before a friend and I were supposed to leave for Australia, also a trip of a lifetime.  I was devastated, because my trip was to be a very active trip... biking, kayaking, diveboat.  There was no way I could have made that trip except on crutches, and I cried when I had to cancel.  

Now, I can say that a month after my hysterectomy, I was out on the dance floor and getting around quite fine.  However, I am not sure that I would have opted for a full-blown European vacation.  If you have the flexibility to cancel at the last minute and still get most of your money back, I'd say wait.  Listen to your body after surgey and see how you feel then about that long flight and what you may or may not feel like as far as energy level and activity. 

In my case, the pathology was back in about a week, though my follow-up appointment wasn't until a few weeks after that.

Chris

Trip

Thanks Chris!  That's encouraging.  Sorry about your Australia trip.  I would be fine letting my party go out and do things while I rested, if necessary.  I'm not the most active, physical gal anyway .  Perhaps if I committed to drinking a lot of water, wore compression stockings and got up and walked ( instead of sleeping) on the flight over, I might be able to swing this, if surgery goes well.  And as many have said, if you need follow up therapy, it's usually not scheduled for weeks after.  This trip is only for 8 days.  I think we'll wait a while before making a definite decision. 

ConnieSW

CheeseQueen57 said:

Trip

Thanks Chris!  That's encouraging.  Sorry about your Australia trip.  I would be fine letting my party go out and do things while I rested, if necessary.  I'm not the most active, physical gal anyway .  Perhaps if I committed to drinking a lot of water, wore compression stockings and got up and walked ( instead of sleeping) on the flight over, I might be able to swing this, if surgery goes well.  And as many have said, if you need follow up therapy, it's usually not scheduled for weeks after.  This trip is only for 8 days.  I think we'll wait a while before making a definite decision. 

Trip

i definitely would wait as long as possible to decide about canceling the trip.  I think you've got time to recover from the surgery as long as you are sensible about pacing yourself.  My concern would be the flight and blood clots.  Don't know how long after surgery that that wouldn't be an issue.  Hopefully the steps you outlined would be sufficient.  Good luck.

joannewtta

CheeseQueen57 said:

Trip

Thanks Chris!  That's encouraging.  Sorry about your Australia trip.  I would be fine letting my party go out and do things while I rested, if necessary.  I'm not the most active, physical gal anyway .  Perhaps if I committed to drinking a lot of water, wore compression stockings and got up and walked ( instead of sleeping) on the flight over, I might be able to swing this, if surgery goes well.  And as many have said, if you need follow up therapy, it's usually not scheduled for weeks after.  This trip is only for 8 days.  I think we'll wait a while before making a definite decision. 

Trip

Have you begged and pleaded and asked if there were any cancellations that you could be scheduled sooner. If you are still working that might not work but I wouldn't be hesitant to beg, plead and grovel for a sooner surgery date.  When my gyny/onc had the diagnosis of UPSC he pointed to the calendar in about one week and said I want you in surgery NOW! I think I could have put off the start of chemo a week or two but not the surgers. I was State 3, grade 3C and started chemo 4 weeks after surgery. I was almost 68 at the time and recovered very quickly from surgery.

Wishing you the very best.

 

Joanne

CheeseQueen57

joannewtta said:

Trip

Have you begged and pleaded and asked if there were any cancellations that you could be scheduled sooner. If you are still working that might not work but I wouldn't be hesitant to beg, plead and grovel for a sooner surgery date.  When my gyny/onc had the diagnosis of UPSC he pointed to the calendar in about one week and said I want you in surgery NOW! I think I could have put off the start of chemo a week or two but not the surgers. I was State 3, grade 3C and started chemo 4 weeks after surgery. I was almost 68 at the time and recovered very quickly from surgery.

Wishing you the very best.

 

Joanne

Trip

Great idea Joanne.  I'll call the nurse navigator now and ask to be on a cancellation list.  I have my own business so I could be flexible. 

Lou Ann M

Sorry you had to join this group

but glad you found us.  We are a strong feisty group.  You will find that you are much stronger than you ever thought you could be.  As hard as it is, the waiting to know is always the hardest part of this battle.  My Doctors have all been really good about adjusting times so I could be a part of special family events.  Hugs and prayers, Lou Ann

Editgrl

CheeseQueen57 said:

Trip

Thanks Chris!  That's encouraging.  Sorry about your Australia trip.  I would be fine letting my party go out and do things while I rested, if necessary.  I'm not the most active, physical gal anyway .  Perhaps if I committed to drinking a lot of water, wore compression stockings and got up and walked ( instead of sleeping) on the flight over, I might be able to swing this, if surgery goes well.  And as many have said, if you need follow up therapy, it's usually not scheduled for weeks after.  This trip is only for 8 days.  I think we'll wait a while before making a definite decision. 

BTW

We did do that trip to Australia the following year and had a wonderful time.  We had travel insurance so we got all of the money back that we had already paid.

I think the idea of seeing if you could get the surgery scheduled earlier is a great one!

CheeseQueen57

Lou Ann M said:

Sorry you had to join this group

but glad you found us.  We are a strong feisty group.  You will find that you are much stronger than you ever thought you could be.  As hard as it is, the waiting to know is always the hardest part of this battle.  My Doctors have all been really good about adjusting times so I could be a part of special family events.  Hugs and prayers, Lou Ann

Trip

Thanks all. They have no earlier dates but said they would call if something became available. That's probably the best I can do at this point. I don't suppose many people cancel out of this kind of surgery. 

Soup52

Hi! Welcome to the group. It

Hi! Welcome to the group. It took me several months before I found this one and I'm so glad I did. So much good advice

BabyCoach

New at this

I so hear you. Diagnosed yesterday and have not yet learned to pace myself with information. Hardly noticed a thing yesterday morning but today I can feel the cancer metastizing! I do better with information and hope to have appointment with surgeon scheduled Monday. Just for the record, I do not want to be a cancer patient! That becomes one's identity for at least a while and I like being thought of in other ways. But here I am. Talk (often) to you later. 

EZLiving66

BabyCoach said:

New at this

I so hear you. Diagnosed yesterday and have not yet learned to pace myself with information. Hardly noticed a thing yesterday morning but today I can feel the cancer metastizing! I do better with information and hope to have appointment with surgeon scheduled Monday. Just for the record, I do not want to be a cancer patient! That becomes one's identity for at least a while and I like being thought of in other ways. But here I am. Talk (often) to you later. 

Welcome, BC, to the club

Welcome, BC, to the club NOBODY wants to belong to.  This is a wonderful group of women who pretty much know everything about uterine cancer.  I don't know how I would have made it this far without them!

I am Eldri, 63, diagnosed with Stage II, Grade 3 UPSC after my hysterectomy on September 30th.  The hysterectomy was the easy part.  My gyno/oncologist used the DiVinci robot and 18 hours after my surgery I danced out of the hospital.  Chemo did not go so good but I'm 13 weeks out from it and getting better every day.

Let us know how you're doing!!!

Love,

Eldri

Unknown

BabyCoach said:

New at this

I so hear you. Diagnosed yesterday and have not yet learned to pace myself with information. Hardly noticed a thing yesterday morning but today I can feel the cancer metastizing! I do better with information and hope to have appointment with surgeon scheduled Monday. Just for the record, I do not want to be a cancer patient! That becomes one's identity for at least a while and I like being thought of in other ways. But here I am. Talk (often) to you later. 

I agree

I do not want to be a cancer patient either but I don't have the final word on my life.  I have to roll with the punches, the less I fight against the odds, the better I am.   Sorry to have to face the facts, but it is what it is.  We have two choices, to live in reality or to live in a fairy tale land.  I'm sick and tired of cancer, but it is my life.  What do you choose?

ncg007

CQ...sorry to have to welcome

CQ...sorry to have to welcome you to the sorority.   Sounds like you've got a good plan with obtaining records in advance and preparing for more opinions in the event treatment is needed; this would have been my advice regardless of how much you like initial dr.  If you do find that you need treatment, get a good understandping of not just the stage and grade, but the exact cancer cell type(s) and if it is USPC or MMMT; it took me a while to grasp this with all the information overload.  I hope all works out with surgery and you are able to make the trip.

Nancy