Newbie

upsofloating said:

Hi cancer 11 So sorry you
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The stats - way outdated as are mainly based on older treatment before it was determined that papillary serous is best treated like ovarian ca not the more common uterine type.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 said:

Your post
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

upsofloating said:

Hi cancer 11 So sorry you
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The stats - way outdated as are mainly based on older treatment before it was determined that papillary serous is best treated like ovarian ca not the more common uterine type.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

Double Whammy said:

Gynecologic oncologist
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

Double Whammy said:

Gynecologic oncologist
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

Pat51 said:

Laura
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

Pat51 said:

Laura
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

upsofloating said:

Hi Pat
I know where you are
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

nancygt said:

Statistics
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.