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High grade endometrial stromal sarcoma - just diagnosed, scared, need support...anyone have anything they can share?

julia12756
Posts: 22
Joined: Jan 2012

Hi,

I'm new here and like many of you, I never thought I would be on this page looking for information or support.

I'm 39, I turn 40 in about 17 days. Happily married for the past 5+ years and have a 3 year old daughter whom the husband and I adore.

I just had a hysterectomy on Jan 10, 2012 and was told I have high grade endometrial stromal sarcoma. So far I am stage 2. Within the next 2 weeks, I'm having surgery to finish staging and to remove the remaining ovary and possibly lymph nodes. (This was a surprise diagnosis, we thought I just had heavy menstrual bleeding and the surgery was planned as such.)

I am looking for anyone who has information about this since I understand it is one of the rarest cancers and information on the internet is sketchy at best. Your support is most appreciated!

Julia
January 12, 2012 (the preview shows a weird date)

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

I can't speak to your particular cancer, but I have upsc (grade 3), at a fairly young age (45), also an unexpected find after a hysterectomy due to heavy bleeding. UPSC patients have the same de-bulking/staging surgery. It's a bear - you'll want round the clock care at home for at least two weeks. Every day things like getting in and out of bed, using the toilet, etc are two person jobs, and you shouldn't lift anything over a few pounds. The scar is impressive, as are some of the side effects (opioid constipation, lymphedema). The important thing to remember is that you WILL get through it and the side effects are TEMPORARY.

Liz in Dallas

julia12756
Posts: 22
Joined: Jan 2012

Liz:

Thank you for your post - I am so scared but ready to fight and hoping for the best. I appreciate your advice too, I'm so used to not asking for help and trying to manage everything for myself. I WILL ask for help when I need so I can get strong again.

Julia in Milwaukee

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Like you, I'm not a big asking-for-help gal, but this time I needed so much help I organized a team. My mother flew in from across the country and moved in with me. A friend came by every day to let my dogs out in the afternoon (I was in the hospital for 5 days). Another group of friends went to the grocery store and bought a bunch of frozen meals. Yet another group of friends brought over home cooked food.

If you have a good relationship with your mother you might ask her to move in for a couple of weeks. I'm sure your hubby is awesome but if he can't be with you 24/7 (or if he's like most fellas he won't be able to deal with EVERYthing) you really need someone. At the risk of over-sharing, you'll need someone on TP duty in the bathroom. You won't be able to lift your girl, or a bag of potatoes! Putting on underwear is a gymnastics exercise. And forget about it if your incision gets infected (no big deal but there is a trip to the dr and meds to deal with), you get lymphedema, your incision leaks...

This isn't the time to show how strong you are. An 8" vertical incision from above your bellybutton to your pubic line is stronger than ANYONE :) Show how strong you are by coordinating your team beforehand.

Joking aside (well, it's not really that funny, is it?), the more stressed out you are trying to deal with everyday life at home - the harder it will be to recover from surgery. And you WILL recover!

Liz in Dallas, who was back to being piss and vinegar in 5 weeks

julia12756
Posts: 22
Joined: Jan 2012

No, not very funny, but we have to laugh about something, or cry, right?? And I would much prefer to laugh.

I had my hysterectomy done with robotics and my doc is planning on doing the exploratory that way too, is that not common? He was saying that I would not have the large incision but rather similar to my hysterectomy, I would have 5 - 1 inch incisions on my abdomen. I think I will ask him at the appointment tomorrow, I want to be as thorough as possible. Regardless of that, I know he plans to do chemo and possibly radiation so I am going to ask my mom to come out.

You know.. I have been healthy most of my life... rarely was sick with even a cold. And it seemed that after the birth of my daughter, all of my reproductive stuff just went caput. I had an abscess last year and had drainage tubes put in and was like that. And the worst was having to ask someone else to wipe my rear. But it's either that or more unnecessary laundry so I had help.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Sorry you're having to come to this site, but you'll find such wonderful support from everyone. I couldn't have come this far without lots of support. As you said you're used to doing it all yourself...well I'm the same. I had to rely on others for help and even go way out of my way to ask for help. You'll be amazed by who your true friends are after going thru this disease.

I was 52 yrs when diagnosed with MMMT which is very aggressive...could be similar to yours, but not the "garden variety". My husband and I work from home and yes I had some home help with him being here. Can't say I would have needed 24/7 care as someone else has posted. Plus you're quite young. Now I had a complete hysterectomy not the Da-vinci so the pain and difficulty moving is more intense.

Nothing in life will prepare us for this disease, but with the help of others we can get thru it. Start reading and researching, but watch what you find on the internet, especially if your type is more aggressive (as is mine). Plus much of the statistics aren't up dated, therefore, inaccurate.

I was healthy most of my life as well, and as you read more you'll find much of this is of course attributed to genes, plus toxins in our environment --- food, air, pesticides in ground where food is grown, etc, etc, etc.

Two books I'd suggest -- ANTI CANCER NEW WAY OF LIFE, by David Servan-Schreiber and FOODS TO FIGHT CANCER, by Richard Beliveau. Anti Cancer is almost like my bible, as sits next to my bedside and if have the urge read or re-read chapters.

I wish you the best and know we're here for you. Keep us posted on your progress and we'll hold your hand the whole way, if you wish!

Hugs,
Jan

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Wow - I'm jealous that you're having the robotic surgery! The recovery is soooo much easier. I had the open surgery where they took the ovaries, tubes, cervix, top third of the vagina, 22 lymph nodes and the omentum. They also gave my innards a wash and tested the wash runoff. I'm not sure if it was the omentum that required open surgery, or if it was the doc wanting to take a close look at my innards.

Either way, I'm back in action, two chemos down and one to go. Then I'll start radiation. I was considered stage IA/grade 3 and while it's great news that the tumor was non-invasive the high grade means looking over my shoulder for a long time.

This board has been a huge comfort - there are many women who have survived worse and that's inspirational.

Liz in Dallas

fanniemay
Posts: 52
Joined: Nov 2011

Hi, Just wondering who your dr. is. Is is Peter Johnson at the Aurora Womans Pavilion? I also live in Milwaukee. The recovery time is so much shorter and less painful. I had the laproscopic and robotic in November. I have the UPSC which is also an aggressive type. God BLess

pakb56
Posts: 141
Joined: Jan 2012

Julia...like i was recently diagnosed with endometrial cancer. The pathology has words like aggressive, papillary, clearcell, carcinosarcoma, mmmt. I do not understand what this all means to me yet. And, like you, this took me totaly by surprise. I had post menopausal bleeding. Gyn did ultrasound and two biopsies that came back negative. I had a hysterectomy with ovaries and fallopian tubes removed on November 30. When I went for my post op checkup, I received the news. I never expected to hear that. Dr. started talking radiation, chemo, and appt with gyn oncologist.

Because I already had surgery, I was sent for a ct scan and was scheduled for a lymph node dissection. However, if the ct scan showed aany other tumors they would cancel surgery. The ct scan was not remarkable and I had the lymph node dissection yesterday with the davinci robot. I have the five 1 inch incisions. They are more painful then my hysterectomy. I think that is because they are locatedbetween the waist and breast and it is an area that moves and stretches with every move you make. It is starting to feel a little better.

I know you asked for information which I have little of. I can tell you I undertand how you are feeling because I am going throuh much the same. I wish you all of the best.

pakb56
Posts: 141
Joined: Jan 2012

Julia...like i was recently diagnosed with endometrial cancer. The pathology has words like aggressive, papillary, clearcell, carcinosarcoma, mmmt. I do not understand what this all means to me yet. And, like you, this took me totaly by surprise. I had post menopausal bleeding. Gyn did ultrasound and two biopsies that came back negative. I had a hysterectomy with ovaries and fallopian tubes removed on November 30. When I went for my post op checkup, I received the news. I never expected to hear that. Dr. started talking radiation, chemo, and appt with gyn oncologist.

Because I already had surgery, I was sent for a ct scan and was scheduled for a lymph node dissection. However, if the ct scan showed aany other tumors they would cancel surgery. The ct scan was not remarkable and I had the lymph node dissection yesterday with the davinci robot. I have the five 1 inch incisions. They are more painful then my hysterectomy. I think that is because they are locatedbetween the waist and breast and it is an area that moves and stretches with every move you make. It is starting to feel a little better.

I know you asked for information which I have little of. I can tell you I undertand how you are feeling because I am going throuh much the same. I wish you all of the best.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I'm another who welcomes you but sorry we are all here talking about these things. I'll give you my two cents.

I don't have same diagnosis as you but I do have aggressive and rare type of high grade cancer - uterine papillary serous carcinoma.

I strongly recommend that you have a gynecologic oncologist do your surgery - you didn't mention if your doc is gyn or gyn/onc. I would discuss the pros and cons of open surgery (which I also had) versus the robotic that you are scheduled for. I have heard discussions here that the open surgery allows the surgeon to explore and check things out better. I'm glad I had this type of surgery. I wouldn't worry about recovery or scar.

Another issue that I feel strongly about - request a tissue assay. This will expose your tissue to various chemo drugs and determine best for you.

I wish you all the best. Keep us posted. Mary Ann

julia12756
Posts: 22
Joined: Jan 2012

Hi Pak and Mary Ann:

Thanks for your posts - it helps to have someone to talk to that is going through similar stuff.

My doc is a gyn/onc - it was a fluke since I had an abscess in my right ovary so my original gyn wanted me to have the hysterectomy via robotics and my gyn/onc is considered one of the experts in the are of using that type of surgery.

I have been making a list of things to talk to my doc about so I'll ask him about the open surgery and the tissue assay. I am not worried about recovery or a scar.

I appreciate all this info - I feel like I'm at such a loss for finding information. Much of what I find online is so out of date. I have my PET/CT this Saturday and my follow up from the hysterectomy today.

Thank you for all the support, my best to you all as well,

Julia

DLS214
Posts: 2
Joined: Mar 2012

Hello,

I am 53 and after many tests it was determined that my uterus and cervix had collapsed, it was thick and I had a 5.5 cm growth it all needed to be removed. No prior tests indicated any signs of cancer so I elected to have my ovaries left in. Two days after the surgery I got a call from my gn, on a Saturday, telling me my labs came back ESS/LMS and he needed to see me that Monday when I left his office I thought I was dying the look on his face and his staffs, wow. A week later I was in an oncologists office and within 20 days my ovaries were removed and I had a CT that showed no additional masses. 3 months later the hip and leg pain are still as it was prior to the surgery, maybe worse and my right side has a steady constant ache. To be honest the actual recovery from both surgeries was not all that bad needed little help missed very little work both times. I will now have to be scanned frequently the first year. They suggested every 3 months however I will try to wait 6 too much radiation doesn't seem like a good plan to me. My oncologist says if I have clear scans for 2 years I may never have a recurrence. Unfortunately like you this is so rare that we are left to dig up stuff ourselves yet the more I reseach it the more I learn rare doesn't mean a lot of women aren't affected by it. Anyway the final determination was ESS and not LMS which I guess is the positive in all of this and supposedly it may never come back I may be cured or it may spread. Most times I am good with it emotionally but sometimes it takes over my mind. My ovaries/cancer is/was estrogen and progesterone receptor positive so I can't take anything for the normal issues that come with a normal cancer free hysterectomy not that I would have taken any anyway but the C word in the back of the mind probably heightens my anxiety. What can we do right? Not sure if my story helps but it is nice to share with someone who is in the same situation. I hope all is going well with you. Good luck on your journey!

JoAnnDK
Posts: 276
Joined: Jun 2011

DLS - did your doctor suggest hormone suppressants since your tumor was hormone-positive?

JOANN

DLS214
Posts: 2
Joined: Mar 2012

No nothing just the scans I have been focused on diet and supplements on my own. Tummeric, vitamin D and things like that while avoiding soy. Where can I learn more about this? Thank you so very much.

Debbi

JoAnnDK
Posts: 276
Joined: Jun 2011

http://chemoth.com/types/aromatase —>>> here is one article.

Maybe these suppressants are only used for post-menopausal women......but after a hysterectomy, aren't we all post-menopausal?

And I saw a trial of this kind of drug (aromatase inhibitors) for women 18 and over.....so....

lalang
Posts: 1
Joined: Apr 2012

Hi, I was diagnosed late Dec. 2011. I am about to complete my second round of gemzar/taxatere. Pretty much all of my hair fell out a few days ago. I had thought it would "thin" gradually over time. I am looking at wigs right now. So far nausea and bone/ joint pain, and I'm tired all the time. I don't know if I like that their is not much info on the type of cancer we have. I don't dwell on my % of longevity. Stay in touch.

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