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Cancer11
Posts: 1
Joined: Feb 2011

Hi,

I am new to this site. I was just diagnosed with serous carcinoma uterine cancer a couple of days ago. I feel scared and alone and I glad to find this site...knowing there are others like me. I had no symptoms and was shocked with the diagnosis. Each doctors(various doctors involved in my surgery) visit reveals more discouraging news. This afternoon I was told that the 5 year survival rate is 30-50% with treatment!! I was devastated. How does everyone learn to cope with this? My surgery is scheduled for Feb. 18th so I don't even now for sure what stage it is, but doctors are telling me that they feel that it is advanced. I am scheduled for robotic surgery and the oncologist suggests both chemo and radiation. What should I expect? What is ahead of me? How difficult are the treatments?

Cancer11

lkchapman's picture
lkchapman
Posts: 103
Joined: Jan 2011

First, take a deep breath and try to put the statistics out of your mind. You can't go by statistics because everyone is different.The stats are based on old data anyway. I was diagnosed with stage IIIC UPSC on 1/28/09 after having a laparoscopic hysterectomy with staging. Since you are having the robotic procedure, your recovery should be even easier, so that's a plus!I was out of the hospital the next day.
The hardest part will be the radiation/chemo combination usually cisplatin. Take your Zofran and other antinausea meds and you should experience minimal nausea. The worst part of radiation is the diarrhea. The radiation kills all your good bacteria in your gut, so be sure to use your anti-diarrheal meds. Don't try to suck it up! For your chemotherapy regimen you may be given a combination of Taxol and carboplatin. These are two of the easiest to tolerate chemos out there. I didn't experience any nausea with them. I did have terrible constipation until I realized the Zofran I was taking to prevent nausea was causing it. When I quit taking it everything settled down.
I know this is a scary diagnosis, but you aren't alone and you can make it through it. The treatment is really not that bad! I cannot stress that enough. Just focus on living in the moment and try to enjoy the ride.

Pat51
Posts: 103
Joined: Feb 2011

Thank you for much for your response. From the suggestion of another poster, I have changed the name I post under to Pat51.

I know nearly nothing about UPSC. A few days ago I didn't even know there was a tumor of this type! In the process of trying to learn about this disease I have been told stats that scare the heck out of me!! I know that I have to stop reading the stats. I have to find a way to deal with this. I know that I need to take one step at a time. Right now the whole thing is just overwhelming to me. I appreciate your encouragement. I am certain that this dicussion board will be of a wonderful resource of information and support for me. I hope that at some point in the future I can help someone as you are helping me now.
I will post again when my surgery is completed.

Thank you again.

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Hi cancer 11
So sorry you need to be here but you should find this to be a great resource and support system as you take this journey.
First, be sure your surgeon is a gynecologic oncologist. This is essential for optimal surgical outcome. Also, dr considers this advanced stage -- have you/will you have a PET / CT scan prior to surgery? This can give a better picture of what to expect with surgery.

The stats - way outdated as are mainly based on older treatment before it was determined that papillary serous is best treated like ovarian ca not the more common uterine type. We are creating our own track record ...and no matter the numbers, each of us is a unique case not just a generality. I have no intention of relating to their prognosis. I take the biz approach: they're just under-promising so we can so thrilled when they over-deliver ;-)

Stay positive and I wish for an eventful surgery for you.
Annie

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

Dear Newbie,

You have gotten to a wonderful place, sadly. Now that you ARE here, PLEASE go to edit profiles and change the 'moniker', name, you gave yourself. You are much more than the sum total of an illness! Finding this new person is our challenge, almost as much as healing ourselves as we are on this journey.

I know I'm not alone in wishing you 'Bon chance', good luck on your upcoming surgery,

Sara

Pat51
Posts: 103
Joined: Feb 2011

You are totally correct. I have changed the name that I post under to Pat51. Thank you for your well wishes.

Pat

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Oops! I meant 'uneventful' --
Annie

Pat51
Posts: 103
Joined: Feb 2011

Annie,

You are correct...I am sure that I WILL find this board a source of great resource and support during my journey. The survivors' experiences and knowledge are of emmence value to me and other newbies. I appreciate your support and your response to my post.

I live in a small town and I am going to a GYN clinic in another city and have been told that the doctor doing the surgery is the best in the area. Since the cancer is so aggressive I felt that having the surgery done ASAP was important rather than postponing it and seeking treatment in another area of the state. The oncologist that I saw on Friday is just a regular medical oncologist. While I liked him, I have serious doubts about his knowledge of UPSC. However, he does welcome second or third opinions for other oncologists. I do intend to seek second and third opinions from gynecological oncologists after surgery. I requested that my surgeon find a gynecological oncologist and was told that there was none near here.

I had a CA-125, chest X-ray, and abdominal/pelvic CT done on Wednesday. The doctor said that the pathology showed poorly differentiated cells, which would indicate that the cancer had advanced and in most cases there was already lymph node involvement. He said that the CT scan looked good. I will, ofcourse, know more after surgery. Since the surgery is Friday, I hope that I will not have to wait until Monday or Tuesday for pathology results.

I know that we are all individuals. The stats that I have been told about do scare me! The doctor originally told me that my cancer was 95% curable until he realized that it was UPSC and everything went downhill from there!! I know that I have to take this one step at a time, so that I do not become overwhelmed. It is very encouraging to me to see so many survivors on this site.

Thank you for your response and encouragment.

Pat

Double Whammy's picture
Double Whammy
Posts: 2267
Joined: Jun 2010

Pat - Please google or look up your surgeon online to see if s/he is a gynecologic oncologist. I bet s/he is if s/he is referred to as "the best in the area". I'm pretty sure only a gynecologic oncologist can do the surgical staging and if this isn't done at the time of your surgery, you may be looking at a second surgery by a gynecologic oncologist to do the staging.

I don't have UPSC and don't know if the staging effects the treatment decisions as much as with other endo cancers. Maybe someone with UPSC can comment on this.

Regardless, I'm sending my best wishes, prayers, and hugs your way.

Suzanne

lkchapman's picture
lkchapman
Posts: 103
Joined: Jan 2011

Hi Pat,
Yes, it is crucial staging be performed at surgery or a second surgery will be necessary as UPSC has a tendency to metastasize even with little to no invasion of the myometrium.

Best wishes,
Laura

Pat51
Posts: 103
Joined: Feb 2011

My GYN surgeon said that there would be other surgeons involved in my surgery. One was a surgeon that would remove lymph nodes for staging. There is also a urologist that is suppose to do a cysto and put stints in my bladder (?). I am new to this so do not know yet all of the details for a hystorectomy. I do not know if they also check the intensinal tract by a colonoscopy. My thought is that they might as well check everything during surgery. There is also suppose to be a pathologist there. I have never had any surgery before so I do not have any personal experience with surgery. I am not sure if this is good or bad. Should I ask them to check for an Her2 expression test during pathology? Should I also ask for MEK/BRAF/RAS testing to be done?

I have had some abdominal twinges since my last doctors appointment on Friday. At first I thought that it was from so many people pushing on my abdomen lately....now it is just scaring me thinking that the cancer is progessing that fast. My imagination may be in overdrive...I am not sure! It may even be stress over this shocking diagnosis.

My husband is a stage 4 melanoma patient and tells me that I will calm down and feel differently in a little while. After all that I have been though with him, I should be handling this whole situation better. I am just very nervous not knowing what to expect and wish that that surgery was over.

Pat

lkchapman's picture
lkchapman
Posts: 103
Joined: Jan 2011

Dear Pat,
I am so sorry to hear that you are having to deal with all of this and your husband's illness too. It sounds to me like you are in good hands and now you need to trust in your doctors. They seem to be on top of things. As for the tumor testing, that would all depend on what you can afford and/or what your insurance company will okay.
I hope the surgery goes smoothly and you have a speedy recovery. We are all pulling for you.
Laura

nancygt
Posts: 86
Joined: Jan 2010

I have done a lot of research to live with the statistics -you may want to read "lies Damn Lies and Statistics" I posted here on 2-2.
Also many of us USPC patients also go to the Ovarian Website since our disease patterns and treatment are so similar there.
I would ask them to test for all possibilities for genetic markers while they have fresh tissue. Once it is frozen or kept in paraffin, it may limit tests. In my two recurrences, the tunors are very small (although numerous and very close to aorta so they have not respreented an opportunity to get additional samples-so this time really is that opportunity.
Have they talked to you about the piossibility of switching to abdominal incision if they feel it is necessary. I had the oopharectomy and hysterectomy done by DaVinci andthey staged me 3A (probably a real stage 4 as current oncologist uses that he feels certain the cancer had already spread to my para-aortic lymph nodes). They did not do peritoneal wash, removal of omentum, or sampling of higher para-aortic lymph nodes (site of my first recurrence) but did sample 13 pelvic area and lower peri-aortic lymph noes. Since virtually everyone who has responded to my recent post had these additional procedures requiring abdominal incision(plus virtually all ovarian patients from what I can tell), my oncologist now is sending me for a surgical consult to see if it is too late for second surgery now (on second recurrence and just started what is scheduled to be 7 chemo treatments). I was so much in shock at time of diagnosis and surgery that I wish I could do a "do-over" now. So do ask them about all applicable testing with the samples and ask what circumstances or discoveries would make them switch over to abdominal surgery and to what benefit.

Pat51
Posts: 103
Joined: Feb 2011

Today I met with the surgeon doing the lymph node dissection. He said that he was doing a peritoneal wash, removing the omentum and taking samples of nodes higher up as well as all pelvic nodes and nodes around the aorta. He said that he was going to check everything and do everything in his power to get all of the cancer.....I can only hope that he is sucessful. I also asked for HER2 expression testing and genetic testing but he seemed to indicate that this is a matter for the pathologist, which it probably is. He did say that he may have to open my abdomen if necessary but did not really anticipate that would be necessary. He seemed to indicate that he would do open surgery if there were bleeding issues or complications. I am just praying that I have made the right decisions regarding this surgery. I was so scared by the aggressive nature of this type of cancer that I felt I didn't have time to research another facility and doctor, get a consultation appointment and rescheule all of the surgery and necessary testing, feeling that this would take several weeks. I live in a small town. This hospital is in a city about 45 minutes from here, the biggest hospital in our area. It is the hospital that the GYN I have always seen is located.

Thank you for the information. I pray that I am doing the right thing. I will let everyone know the results after surgery and pathology.

Thank-you,
Pat

Pat51
Posts: 103
Joined: Feb 2011

I know that GYN surgeon is not an oncologist. However, he is the best GYN surgeon in the area. I had thought about looking for a gynecological oncologist in another area of the state, but that would mean getting an appointment for a consultation and then starting the whole surgery schedule over probably delaying the surgery from a few to several weeks. Given what an aggressive cancer I am told that this is, I thought it was more important to just get it out!! Although, I admit that I am very nervous as to whether everyone knows what they are doing with a rare cancer form like UPSC. I do intend to get second and third opinions after the surgery and I have staging. I figure the more opinions I get the better idea I have about a cancer that I know virtually nothing about.

Thank you for the well wishes and prayers.

Pat

CaCowgirl
Posts: 27
Joined: May 2010

I found this site after my cancer (hysterectomy) surgery last year. After sailing through the surgery,on the day I was to be released I was told I was staged at 3C.I was shocked , but my friends rallied & then I started my research, while recuperating. I did not agree w my oncologist that the aggressive treatment of chemo & radiation was necessary. so it has been 9 months & I am back at work, doing everything I ever did & even enjoying the Arabian I got last week & I am hoping our riding relationship will last another 10 years-I'm in my 60's & he's 20! But if you saw us running out on the trail-you would never guess it. So, we are all individuals & I wish you the best. (My cancer was only a grade 1).

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

This cancer journey is a huge shock for any of us. I'm one who has to learn so much and wants to know it all....not possible. I've learned to go with the flow and trust my docs (mine are the best, so thankfully I can rely on them). But..on other hand I've learned to do my research as many thoughts or suggestions from my doc I do question. We do chat further and he can see my side of thinking. So..it does pay to be well informed and coming to this site will truly help you gain better knowledge.

Lastly, cancer is a journey and we learn as we move down the path. Keep asking your questions, reading more books and sites and networking with others who have your cancer.

Knowledge is power!!! Be positive as you'll get thru this as we all have, but when one is at the opening blocks, it seems forever....

Good luck and welcome!
Jan

SENDING POSITIVE VIBES YOUR WAY.............

Pat51
Posts: 103
Joined: Feb 2011

I am happy to have found this site and know that there are other women that I can relate to. The experiences of women who have been on this journey is very valuable to me. I am sure I will find a lot of support here and I welcome any and all information that anyone wants to share with me.

I am sure that once I can gather my courage I will have a more positive outlook. It is just the statistics that really threw me since I was just diagnosed!!

Pat

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Hi Pat
I know where you are coming from with the sense of urgency to have the surgery done -- been there a few times before. However, do understand that although this is an aggressive type of cancer you do have time to make the best decision for best outcome. I will note, that I tended to panic first and rush ahead. Just want to offer a few additional comments for you:

The 'poorly differentiated cells' would refer to the Grade -- UPSC is usually Grade 3, an aggressive grade. UPSC also has a pattern of spreading and seeding rather than just growing locally as a tumor. As far as the cancer 'advancing' that is what determines your Stage. Unless there were notable tumors or enlarged lymph nodes on CT scan, the doctor does not know the stage until surgery is done. Even with positive results on CT, they would not know for sure till surgery and subsequent pathology is completed. BTW, full path report will most likely not be available till later.

The concern for having a gynecologic oncologist perform the surgery is due to this manner of spreading. It could be that the cancer has been found early and is fully contained in the uterus. That is entirely possible and would be great news. However due to UPSC tendency for spread, staging surgery includes examining in surgery the contents of the pelvis and abdomen for any signs of spread. I will use my case as an example, I was quite in the dark as to the nature of this cancer other than that is was aggressive and behaved like ovarian ca - I had no idea what this implied. Despite the lengthy discussion with my gyn-onc pre-op I was quite unprepared for the extensive permission I had to sign as it included possible colonectomy/colostomy, ileostomy, plus various other possibilities - I was expecting "hysterectomy"! This was a 7 hour surgery that did include removal of the spleen, omentum, as well as multiple small tumors on large and small intestine, pelvic and para aortic lymph nodes, in addition to the complete hysterectomy. This is not necessarily the type of surgery most gynecologists perform with much frequency.

I don't want to overwhelm you with information so stop reading if this gets to be TMI!

Another point I just learned in a recent visit with my gyn-onc was re times when this cancer is most likely to spread faster. One time is immediately post debulking surgery (this is what you will be having) as the cells left behind are opportunistic and take advantage of the decreased competition for resources to grow. Hence the need to start chemotherapy as soon as possible post-op. I mention this as you state you want to do consulting in regard to follow-up treatment options post op. If so, be sure to get planning underway asap so you will be able to move ahead when you are healed and ready to start.

I still recall how my head was spinning from the shock of diagnosis and all the treatment implications. Just a couple of months before I had been cruising the Caribbean, snorkeling and playing with the sting rays, cave tubing in underground rivers, zip-lining though jungles -- living large on my 'honeymoon', and then this huge slap up side of the head. And too many life-changing decisions to be made.

Take some deep breaths and make any notes to ask your doctors questions so you have the best understanding of what will transpire.
Take care and sending positive thoughts your way.
Annie

Pat51
Posts: 103
Joined: Feb 2011

Thank you so much for the information and no it is not too much information. As I know virtually nothing about this disease, any and all information is helpful and welcomed. Today I met with the surgeon that is doing the lymph node dissection. He assured me that he is very experienced. He said that they would do a wash first. He said that he was taking the omentum, all nodes around the aortic area and all other pelvic nodes. He said they were going to look at everything. He said that with robotic surgery he could get a better look than with the naked eye to see that he got everything. He said that there was always the possiblity of having to open me up to an abdominal hysterectomy but he did not anticipate having to do that. I did ask him about testing for various factors but he did not seem to know, as if this is a pathologists question, which it probably is. He said that it would probably be Tuesday or Wednesday before pathology was done. I am going to try to make an appointment for a second opinion at Mayo Clinic after I get the pathology staging. The local oncologist said that chemo would start 4-6 weeks after surgery. I do not want to try to make to many appointments before I can have the pathology slides forwarded to the necessary facility. I would think that the place doing the second opinion would have to see the slides to make an accurate diagnosis or prepare a course of treatment.

Your are right this whole situation is overwhelming!! A week ago I thought that I was healthy!!

Pat

susangr
Posts: 58
Joined: Oct 2010

I was diagnosed at age 57 with UPSC in September 2010. I had robotic surgery with removal of everything, washings, 22 nodes removed, etc. Everything negative except some lympvascular space involvement. Diagnosed grade 3 stage 1a. After a 5 week recovery period started on 25 daily IMRT treatments with weekly Taxol and 3 brachy treatments. After a 1 month break started on 4 Taxol treatments 21 days a part. Only tolerated one treatment and then changed to Taxotere due to neuropathy. Have now completed the chemo and am on 3 month followup. Currently I am being assessed for lymphedema of my right leg a complication of node dissection and pelvic radiation. Everyone differs as to what they experience. I was amazed to be discharged from the hospital within 24 hrs or surgery with minimal discomfort.

There is excellent information on this site and lots of support. I have found the information accurate, current, realistic and comforting. I look forward to contributing and seeking information as needed. Sincerely Susan

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