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Endometrial CA grade 1 - possibility of delaying hysterectomy for 3-week trip?

LadybugKae's picture
LadybugKae
Posts: 1
Joined: May 2013

I'm very overwhelmed! I am 58, 4 grown kids. I saw dr for post menopause bleeding, more like just light spotting for a week in April. After mammogram & pelvic ultrasound, the resultsshowed linear microcalcifications R breast, uterine polyp AND a 2 cm fluid-filled cyst on L ovary. I went for stereotactic biopsies x2 R breast (on my birthday no less! Frown), then hysteroscopy d&c the next week.  On May 9th I received diagnosis of endometrial cancer grade 1 + atypical ductal hyperplasia in R breast. .

I have questions:
1) Is waiting 7 weeks for hysterectomy surgery too long? I will see breast surgeon on May 30, GYN oncologist on June 7. For over a year hubby & I have been planning a 3 week trip to Italy, June 5-27, we hope to now leave on the 8th or 9th. Has any one with grade 1 ca waited 6 or 7 weeks for surgery? With grade 1 CA, how was your level of discomfort/cramps as the weeks go by, did the bleeding come & go, or ever become real heavy?

2) Has anyone ever scheduled both hysterectomy and surgical biopsy to be done together under 1 gen anesthesia? How difficult was recovery?

Thank you everyone for the great info, will be doing lots of reading on this website before my surgery!

Double Whammy's picture
Double Whammy
Posts: 2472
Joined: Jun 2010

I had both breast and endometrial cancers, diagnosed 4 days apart 3 years ago.  Only your gyn oncologist can say whether it's ok to wait or not.   In my case it was.  I was diagnosed April 27 and did not have my hysterectomy until July 1.  This was because the breast cancer trumped the endometrial cancer. 

In my case, the surgeries were not done at one time because of the anticipated length of time for anesthesia, probably because things can take longer than anticipated with cancer surgeries.  I was scheduled for a lumpectomy and sentinal node biopsy and everything went well.  That was a rather short surgery (less than 2 hours I think).  No surprises.  I had to recover from that surgery before my hysterectomy which did not happen for 6 weeks after breast surgery, primarily because of the surgeon's schedule.   I had robotic assisted hysterectomy and that took 4-5 hours.  That surgery takes longer and I suppose it could have taken longer if there had been more extensive disease.   My endometrial cancer was Stage 1a, Grade 1.  Gyn Onc said the wait made no difference.   Easy to say in hindsight.  Many women have had hysterectomy expecting the same results as I had and found more aggressive forms and higher stages of endo cancer than anticipated.  I didn't.  I was fine and I really didn't have a choice except to wait given the dual diagnosis. 

While waiting for my hysterectomy, I did have an episode of bleeding that lasted several days that was much like a period (I had had NO bleeding prior except after the biopsy).  Knowing I had cancer, it made me very nervous, but it did stop and when I called to report it I was told not to worry unless I soaked a pad in 30 minutes.  Never happened. 

Be sure to ask your breast surgeon about the wait, too.  My breast cancer was also early stage (1b) grade 2, but it happened less than 2 weeks after diagnosis.  Sounds like your biopsy showed "precancer" so waiting might be perfectly fine there too.

Good luck.   Just get professional advice and make informed decisions.  In my case, the wait was fine.  Since you don't see gyn onc until June anyway, and it usually takes a couple of weeks to schedule the surgery, you'll really not be delaying that much.  Doesn't sound like they're rushing your surgical consults and this is a good thing.

 Suzanne

Liberty123's picture
Liberty123
Posts: 8
Joined: Oct 2011

I was 57 when I had extremely light post menopausal bleeding. This was Thanksgiving Day. Saw the doctor the next week and had ultrasound which showed thickened lining. D & C was scheduled but due to abnormal ekg and weather delays did not have the D & C until February 23rd. By this time bleeding was continuous. Next week found out it was "the good" kind of uterine cancer. Because of where we live have to go out of town for gynocological oncologist. That appointment was three weeks later. Doctor said in  my case it was fine to take our week long family vacation and postpone surgery for another 3 weeks. So I did.

However, the bleeding by this time was continuous and at times was heavy, but not heavy enough to be an emergency. It was like a continuous period that lasted three months.  It did interfere with my enjoyment of the four generation family vacation we took. I don't know if I would have chosen to have the surgery and take a trip at a later time, but I sure would have liked to have felt better.

Surgery was two days after we returned home. I was grade 1, 2nd level because of how it "looked". Which may have been from waiting so long to have the hysterectomy. I had a robotic one and recovery was pretty easy. It was undecided whether I should have any bracyatherapy radiation - the tumor board and several other doctors who reviewed it were split right down the middle on if it was necessary or not. I finally decided to have the three treatments because if it returned treatment would have been much harsher. I had no effects from the radiation and have been ned for two years now.

Good luck with your journey, I hope all goes well.

Kathy

 

 

 

cheerful
Posts: 145
Joined: Apr 2011

 

Hi LadybugKae:

  I am responding to your post. I joined the uterine cancer board in April of 2011, although I do not post very often, but every now and then.

   I am 61 (will turn 62 in July) and I was 59 when I was diagnosed with UPSC (also known as Uterine Papillary Serous Carcinoma) in February of 2011 (over 2 years ago).  I did have heavy bleeding and went through two pads a day and by January of 2011 sometimes I went through 4 pads a day.  I live outside of Phila., PA in the suburbs of Delaware County, PA and we have excellent hospitals and doctors in our area.

   I had my hysterectomy and all my cancer treatments of 6 rounds of carboplatin and taxol and radiation done through Crozer Chester Medical Center in Upland, PA. My gyn and oncologist are both affiliated with the hospital and my oncologist with the cancer center there. I also met with a radiolgist who is affiliated with the cancer center there as well and had 3 rounds of brachytherapy after my 6 rounds of chemo were over with. I started my chemo treatments in April of 2011, finished 6 rounds the end of August of 2011 and started radiation the end of Sept. and finished in mid October of 2011. I also had to have a shot of Neulasta and a blood transfusion after 5 rounds of chemo as my platelets were very low and I was very weak which I understand is normal after several rounds of chemo.

  I have had several cat scans and CA 125 blood work all of which have shown NO evidence of disease for the past 2 years for which I am very grateful and thankful. My cancer CA 125 marker has remained normal and about a 7 or an 8 which is considered normal - I believe normal is up to 35 or 39 I believe.  I am scheduled for my blood work the end of May and my cat scan for early June - I had an exam by my oncologist in early April for which was normal and my pap smear came back normal as well for which I am grateful and thankful as well.  So now I will have to wait for results of my bloodwork and cat scan in the nex few weeks. Waiting is the hardest they say. But I am hoping for a good report that I continue to remain with NO evidence of disease. I have changed my eating habits for the better and am eating a lot healthier now. Once you get a diagnosis of cancer, you change your eating habits for the better.  Also, my son who is 18 going on 19, lost over 100 lbs since he is cycling and eating also for the better for the last 4 years. He lost all this weight within the first year from 2009 to 2010. He used to weigh 260 lbs. and is now down to 145 lbs and looks great and will continue to cycle. He has cycled over 19,000 miles in 4 years and enjoys it very much.  

  I scheduled my hysterectomy in November of 2010 for February 1 of 2011 almost 3 months because of my GYN's schedule and at the time I did not know that I had cancer although I did sort of surmise it in August of 2010 when I first called my GYN and said I have been bleeding every day for a couple of weeks. I was bleeding when I went on vacation to the New Jersey shore in early August and then called my GYN over a week later after I returned from vacation for a few days.

  I then went through an ultrasound in Sept. and a biopsy in October to which showed nothing as I had a large fibroid blocking it so I decided to proceed with the hyserectomy, but as mentioned, did not know that it was cancer until I had the surgery on February 1st. I did push for the surgery and am so glad I did as I felt very drained and very tired every day I started bleeding and knew something was really wrong with my body.  My gyn did the surgery on February 1st and I was in surgery for 3 hours. My uterus was very large and had to be Cut up in sections he mentioned to me, but the cancer was nothing more than a Large Polyp (5 centimeters) from what my radiologist later told me when I met with the radiologist in June discussing radiation with him which I later started in late Sept into mid October. I also got very good health insurance as of January of 2011 through my husband's company as he works for a healthcare company placing travellng nurses, so I felt God was looking after me and wanted me to live and survive this cancer. The health insurance covered ALL of my chemo treatments of $30,000 for each of the 6 treatments and my 3 brachytherapy treatments so it was a very high and tremendous amount of money. I am So thankful and Grateful we got this Wonderful Health Insurance when we did and it is an excellent health plan. The cat scans are Very expensive also and my plan pays for most of the cat scans. Most of my blood work is covered also, I might owe a small amount of money which is great.

   I felt Very fatigued and drained every day I was bleeding and could not wait until the surgery was done although I was scared the day of surgery which is a perfectly normal reaction.  After I was diagnosed with uterine papillary serous carcinoma (UPSC) as it is known, as I met with an oncologist two days after my hysterectomy as my gyn recommended the oncologist to me as he has known him for many years. My oncologist is nationally known all over the country and has over 35 years of experience and is very versed and knowledgeable on UPSC.  Thankfully, for me I was diagnosed at stage 1. The large polyp of 5 centimeters was confined to my uterus.  I did not though have my omentium removed or my lymph nodes removed at the time of my hysterectomy since my GYN did not know it was cancer until After the surgery was over.  I was given the option of having my omentium and lymph nodes removed when I was going through 6 rounds of chemo, but decided not to have them removed because I was very weak after going through 3 rounds of chemo.

   My oncologist mentioned to me that if anything should light up on a cat scan to have the lymph nodes removed, but they never did, so I did not proceed with this additional surgery. Most women though have surgery through their oncologists and have lymph nodes and their omentiums removed. but I was too weak and too tired to go through additional surgery, plus I did not want the risk of lymphadema and have problems with my legs in the future, so that is why I opted not to have this additional surgery done.

   Once I met with my oncologist again in late February of 2011, he mentioned to me that women in ALL stages of UPSC can die and it really scared me very much, although he later told me that I should SURVIVE this Rare and Aggressive type of cancer based on my age which was 59 at the time, the histology of the cancer cells and my good medical history so he did feel I would survive it. Well, now a little over 2 years later I am still here with No evidence of disease and I am very happy and grateful. My thoughts were that I would try to survive and that this cancer would go into remission and get through it as best as I could through the chemo and radiation treatments.

  I did a lot of reading on UPSC and found out that women have a 43% chance of reoccurrence if they do NOT have chemo and to me that is like playing russian roulette with your life, so I decided based on my oncologist's high recommendation and plus reading the statistics of UPSC on the Internet although there is a lot of older statistics on the Internet, to go through chemo as it seemed like just about every woman going through uterine cancer goes through the standard chemo 6 rounds of it and radiation treatments depending on the stage of the cancer.  I know I wanted to live for my family and friends and to survive and go on with my life and enjoy each and every day to the fullest that is why I went through everything plus knowing I did everything I could to destroy the cancer cells even though I did have surgery and mostly everything was removed like my cervix and ovaries and fallopian tubes which were all Clear.  I was also told by my radiologist that I had an 80 to 90% chance of survival which to me were very high odds in my favor.  

  I don't think waiting 7 weeks is too long as it probably will not change the stage. I started bleeding in July of 2010 and had my surgery on February 1 of 2011 so it was a little over 6 months. I was Stage 1 and probably a 1A although my oncologist never told me what letter just the number stage, but my cancer was a large polyp (5 centimeters) and confined to my uterus.  I also took Iron tablets to help with the blood loss of bleeding every day and it did help me to feel stronger each day so I would ask your doctor about this as well.

  I hope that you and your husband enjoy your great trip to Italy. I was in Venice, Italy in October of 1973 nearly 40 years ago and also went to Germany and Austria for 2 weeks then and enjoyed the trip immensely and saw the German Castles, went to Salzburg in Austria, took the Sound of Music tour and saw a Salt Mine in Austria and took a Gondola ride in Venice with the 3 girls I went with Not very romantic obviously, but saw churches there and a museum, I was single at the time and was 22 when I took this trip so it was many years ago, but I remember the trip and it was a really wonderful trip and great time. One of the girls planned the trip herself. I also went with her to Greece in 1973 and that was a great trip and had a wonderful time there as well.

  I would love to return to Italy with my husband (whose mother was partly Italian) and would like to go to Rome, Florence and Milan in a couple of years. I have an 18 almost 19 year old son who just finished his first year of college and made the Dean's List.  I would like to travel after my son finishes college in 3 years, but that is a ways off and for now I am going to Baltimore, MD for 6 days in July and will celebrate my birthday away which will be so nice. My son is a big Baltimore Orioles fan and my husband enjoys baseball a lot as well so they will be going to a number of games in Baltimore when we are away. My husband and son are also taking some day trips to Baltimore which is almost a 2 hour drive from the suburbs of Phila.

    I have done a lot of travelling over the years from 1970 through 1994 almost 24 years and have gone to Europe twice, Hawaii, most of California, Las Vegas, Arizona, the Caribbean Islands, the West Indies - Antigua and St. Kitts, Canada, the NJ shore, the DE shore, The New England States of Boston, Cape Cod, Martha's Vineyard, part of New Hampshire, York Beach in Maine, Vermont, Disney World in Fla in the late 1970s which was so pretty and also Bermuda where I went on my honeymoon in 1980.  If you can travel now that your children are grown, by all means take advantage of it. I was fortunte enough to travel so much when I was single for 11 years after I graduated from high school and was married almost 14 years before my son was born and then I stayed home with him for a few years and then went back to work part time, then full time. and am currently out of work and now I am looking for part time work in the legal field.

  As far as recovery, I was in the hospital for 2 days for my surgery and then rested and then another 2 days after I had my incision removed over a week later February 11th to Feb. 13th.  I then had to recuperate for another 6 weeks and had a home health nurse come to my house to help nurture and heal my incision every day for 6 weeks that had opened up after my staples were removed about 6 days later so I was done and fully recovered by the end of March. It was quite an ordeal I must admit and was very tiring to go through.  I also had to see my gyn every week for those 6 weeks to make sure my incision was healing properly which it was thankfully, I then started chemo in mid April which lasted until the end of August. I skipped the month of June basically because my oncologist thought I was going to have additional surgery of my omentium and lymph nodes removed, but I decided not to have this additional surgery.  

  For recovery, everyone recovers I guess differently, some women here on this Uterine board have the DaVinci surgery and it is less recuperation time than a hysterectomy is and much faster to recover with the DaVinci or Robotic surgery.  Also, my situation was different with the incision opening up (I believe there is a 30% chance of it happening) so it took me obviously longer to recuperate and much more to go through than a woman just recuperating from a hysterectomy itself.

  After my chemo and radiation ended in October, I was Extremely tired from going through chemo treatments (I know I felt very tired the first couple of days, did not have an appetite until the 5th day and basically ate 2 meals the first few days. I lost weight from this about 20 lbs. or so, but have gained back 10 lbs. and am still trying to lose weight.  I am overweight and am trying to lose weight, by eating better foods. You will also lose ALL your hair if you take the Taxol drug which is a standard treatment for uterine cancer so I immediately went out and bought a wig which I wore for a little over a year.  I had my first haircut in October of 2012 since March of 2011 so it was basically 19 months of not getting a haircut.  It was very hard to go through losing your hair and I had a lot of hair and very thick and a one length bob, but I felt as long as my life was saved that was the most important and that your hair would grow back eventually which it did and the wigs today are so natural no one would really know anyway.

I chose a wig that was a one length bob and it looked so much like my own hair so hardly anyone could tell, I did not go many places just to church when I could there were a couple of treatments when I was just too sick to attend Mass as I am Catholic, but I basically attended Mass every week and missed maybe 3 or 4 times going through chemo and then I did get very sick in Sept of 2011 for about a week and a half and saw my family doctor and he gave me an antibiotic to take and I felt better. Since then, I have NOT been sick at all with NO colds and have been getting the flu shot the last 2 years which has helped me tremendously since I do tend to get a few colds every year, but have NOT had a cold since Sept. of 2011 so it is quite some time for which I am very happy and grateful.

  If your surgery and recovery goes smoothly, you should expect to recover within 4 to 8 weeks.  Good luck with everything.

  I hope that everything goes well for your surgery and recovery, hope you have a wonderful trip to Italy with your husband and do keep us ladies posted here - I hope I was a big help to you with your questions and good luck with your surgery and recovery and hope everything turns out great for you.

Cheerful

randrshrum's picture
randrshrum
Posts: 1
Joined: May 2013

Ask your doctor which type of endometrial cancer you have.  Type I is a much slower growing cancer than Type II.  I was diagnosed with Type II endometrial cancer stage 3d.  I had surgery and then had 6 carboplatin/taxol chemo treatments sandwiched with 25 external radiation treatments and 3 internal radiation treatments.  I was diagnosed 11/11, had surgery 12/11, started chemo in 1/12, finished chemo at the end of 6/12.  It is now 5/13.  It has been a long, long road, but through God's mercy and grace, I am feeling better now than I have in several years.  I still have some neuropathy at times and joint pain, but overall I am doing much better.  I am now up to walking 1.5 miles everyday, and just 3 months ago, that wasn't even a possibility.  In the end, I complemented my treatments with some natural supplements, and I continue them today.  I still have lingering side effects, but they have lessened with time and effort.  I know that with prayer and diligence on my part, that I am doing much better now.  

My advice is to do a lot of reading and be prepared to be proactive in your treatment.  Go prepared with information for yourself to ask your doctor about.  Be your own medical advocate.  Even though you may have great doctors, they still don't know you like you do!  Listen to your body and be informed with information to ask questions about your treatment and diagnosis.

Don't give up!

 

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