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Papillary serous sarcoma patients

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  • Peggylee
    Peggylee Member Posts: 13
    Editgrl said:

    Peggylee

    I'm so sorry that you are having to deal with this, but know that you are not alone.  As others have said, this is the scariest time when everything is just getting started and there is so much that is yet unknown.  Before surgery, I asked my surgeon how many lymph nodes he would be taking, and he told me that everyone was different and he wouldn't know until he got in there.  He ended up taking 22, 4 of which were positive.  

    I know in my case, when I talked to my ob/gyn right after diagnosis and as we set up my pre-op appointment, I asked if I would be meeting with the gyn/onc prior to surgery.  She initially said I would meet him the day of surgery as well.  When I expressed a desire to meet with him beforehand, she arranged to have him meet with me during my pre-op appointment with her, ten days prior to surgery.  But I did get the impression that at least with my situation (an HMO), it wasn't unusual not to meet the gyn/onc before surgery.

    The surgery and recovery turned out not to be that bad.  Our bodies are remarkably resilient. Once you get all of the pathology back after surgery, then you and your gyn/onc and his team will come up with a plan.  Once that is in place, you will be surprised at how much better you feel.  I know right now it's still a shock and I understand that unreal feeling of looking in the mirror and feeling great, while knowing you have this serious disease.  

    Please try to breathe right now.  Enjoy the holiday with family and/or friends, and try to put it out of your mind for at least a while, easier said than done I know.   But the more you can hold on to your "normal" routine while awaiting surgery, the better you will feel.  And if you need to vent, scream, rage, please know that we are all here for you and we understand.  

    Chris

     

    I

    Thanks for encouragement

    Tomorrow I'm going ziplining with my children.  I might have a different  kind of fear to deal with lol.

  • Kvdyson
    Kvdyson Member Posts: 789
    Peggylee said:

    surgery july 6, 2016

    Sorry to say i'm a new member of this club.   according to my CT scan everything is clear I have a dime-sized tumor in the uterus.  I was diagnosed Papillary Serous Carcinoma grade 3 ....4 weeks ago.   Worried things have changed since then being it's fast growing.  Complete hysterectomy, removal of all lymph nodes (which  were clear)  I am debating if i should have them removed due to side effects.  Don't know if i'll do chemo etc as i'm sure they will want me to.  I can't believe  this is happening, I look in the mirror, look the same, feel fine.

     

    I recall being in your shoes just last year

    Peggylee, I am so sorry to hear of your diagnosis. I recall being in your shoes just last year. It is a very scary time but please know that you will have all the support that you need from us. 

    Waiting for the surgery was especially stressful for me. I could not wait to get that tumor out! My surgery was a TAH-BSO with 14 lymph nodes excised. It took me about 4 weeks to get back to feeling normal. My diagnosis was uterine carcinosarcoma, stage 1b, grade 3. 

    The pathology report on the tumor will help your doctor determine your recommended treatment plan. My treatment was 6 rounds of chemo (Ifex/Mesna/Taxol) with 28 external radiation treatments "sandwiched" between the 3rd and 4th rounds of chemo. I finished treatment at the end of May 2016 and have had a clear scan showing no evidence of disease or "NED".

    Trusting your medical team and their advice is critical. I have no regrets for following my gyn-onc's recommended treatment plan. If you have doubts, get another opinion! Frontline treatment may be your best opportunity to get ahead of this monster and you don't want to regret a decision that was made from a place of fear. 

    At this early stage, I would recommend getting copies of all your pathology and surgery reports for your files. They will come in very handy to refer back to and if you decide to get a 2nd opinion. 

    Also, consider taking a recorder with you to appointments or find out if your cell phone has an app to record them. There may be a lot of important information discussed and you don't want to miss anything. I listened to some of the early recordings again recently and realized that I had missed some very important things the dr. had said at the time.

    Good luck to you on Wednesday. You can do this and we will be here to support you! Wishing you peace and strength, Kim

  • CindylovesMike
    CindylovesMike Member Posts: 50
    Port

    I had mine out in Jan 6 months post chemo treatment, Mine hurt and I had a lump develop because there was a problem with the tube that comes out of it.

    my onco said I could have it out if I wanted to. When I saw my surgeon his recommendation was to get them out because of infection. He said not a big deal to put it back. My next scan was clear which was 6 months later. But I don't have pain in the breast it was above anymore.

  • janaes
    janaes Member Posts: 799
    Kvdyson said:

    I recall being in your shoes just last year

    Peggylee, I am so sorry to hear of your diagnosis. I recall being in your shoes just last year. It is a very scary time but please know that you will have all the support that you need from us. 

    Waiting for the surgery was especially stressful for me. I could not wait to get that tumor out! My surgery was a TAH-BSO with 14 lymph nodes excised. It took me about 4 weeks to get back to feeling normal. My diagnosis was uterine carcinosarcoma, stage 1b, grade 3. 

    The pathology report on the tumor will help your doctor determine your recommended treatment plan. My treatment was 6 rounds of chemo (Ifex/Mesna/Taxol) with 28 external radiation treatments "sandwiched" between the 3rd and 4th rounds of chemo. I finished treatment at the end of May 2016 and have had a clear scan showing no evidence of disease or "NED".

    Trusting your medical team and their advice is critical. I have no regrets for following my gyn-onc's recommended treatment plan. If you have doubts, get another opinion! Frontline treatment may be your best opportunity to get ahead of this monster and you don't want to regret a decision that was made from a place of fear. 

    At this early stage, I would recommend getting copies of all your pathology and surgery reports for your files. They will come in very handy to refer back to and if you decide to get a 2nd opinion. 

    Also, consider taking a recorder with you to appointments or find out if your cell phone has an app to record them. There may be a lot of important information discussed and you don't want to miss anything. I listened to some of the early recordings again recently and realized that I had missed some very important things the dr. had said at the time.

    Good luck to you on Wednesday. You can do this and we will be here to support you! Wishing you peace and strength, Kim

    Peggylee, welcome to this

    Peggylee, welcome to this group.  No one really wants to be here, but for me it has been a great support.  I wouldnt have made it this far with out the sweet ladys here.  I wish you well with your surgery.  I hope you have support as you go through your journey.  I remember after I found out i had cancer (carcinisarcoma stage 2 grade 3) I had two weeks before surgery and just went back to work until then.  My co workers couldnt believe i was working while i had cancer.  I felt fine other than i was starting to feel my cancer.  Im glad you went zippling with your kids.  Enjoy your good days.   Lot of love, Janae

  • Peggylee
    Peggylee Member Posts: 13
    Peggylee said:

    surgery july 6, 2016

    Sorry to say i'm a new member of this club.   according to my CT scan everything is clear I have a dime-sized tumor in the uterus.  I was diagnosed Papillary Serous Carcinoma grade 3 ....4 weeks ago.   Worried things have changed since then being it's fast growing.  Complete hysterectomy, removal of all lymph nodes (which  were clear)  I am debating if i should have them removed due to side effects.  Don't know if i'll do chemo etc as i'm sure they will want me to.  I can't believe  this is happening, I look in the mirror, look the same, feel fine.

     

    Had my surgery July 6th,  three weeks Wednesday I'm recovering well. Sent me home the next day miserable that night with cramps and gas.  Sent me home with a catheter I had to wear for 4 days being it was a weekend. Diagnosed with papillary serous Adenocarcinoma stage 1B grade 3.  What's the differences between that and carcinoma I don't know. I realize I'm fortunate to have caught this early. Due to the fact I left my lymph nodes they can't really stage it properly. They did say they would do chemo either way if left them in or not. I have an appointment to go to the oncologist this Wednesday. I don't really want to have chemo and I know they'll probably say radiation as well as they had mentioned it prior. Pathology report says tumor summary that lymph- vascular invasion present in the uterus.  This type of cancer has feelers that can spread to other organs. I have two holistic friends that are encouraging me to do gresson therapy.... there have been success and people have become cancer free. Has anyone heard of that? I doubt very much if I can do that as its a very strict diet with coffee enemas.  Doctor said without chemo it could come back in a year or 10 years they just don't know.  I suppose I'll have to give in to the chemo.  They did do the Lynch syndrome test as there has been cancer on Father's Side plus first cousins fortunately it came back negative which will be a relief for my children.

    Doc said chemo.... loose hair in two weeks may loose eyebrows and eyelashes.  Neoroprathy ... who knows what else side effects.  Please tell me what happened to you regarding  side effects. I know how it was for my father and father-in-law cousins... they didn't fare so well. It's very frightening, as you all know, to go through all this.

  • brissance
    brissance Member Posts: 192
    Peggylee said:

    Had my surgery July 6th,  three weeks Wednesday I'm recovering well. Sent me home the next day miserable that night with cramps and gas.  Sent me home with a catheter I had to wear for 4 days being it was a weekend. Diagnosed with papillary serous Adenocarcinoma stage 1B grade 3.  What's the differences between that and carcinoma I don't know. I realize I'm fortunate to have caught this early. Due to the fact I left my lymph nodes they can't really stage it properly. They did say they would do chemo either way if left them in or not. I have an appointment to go to the oncologist this Wednesday. I don't really want to have chemo and I know they'll probably say radiation as well as they had mentioned it prior. Pathology report says tumor summary that lymph- vascular invasion present in the uterus.  This type of cancer has feelers that can spread to other organs. I have two holistic friends that are encouraging me to do gresson therapy.... there have been success and people have become cancer free. Has anyone heard of that? I doubt very much if I can do that as its a very strict diet with coffee enemas.  Doctor said without chemo it could come back in a year or 10 years they just don't know.  I suppose I'll have to give in to the chemo.  They did do the Lynch syndrome test as there has been cancer on Father's Side plus first cousins fortunately it came back negative which will be a relief for my children.

    Doc said chemo.... loose hair in two weeks may loose eyebrows and eyelashes.  Neoroprathy ... who knows what else side effects.  Please tell me what happened to you regarding  side effects. I know how it was for my father and father-in-law cousins... they didn't fare so well. It's very frightening, as you all know, to go through all this.

    It is Scary

    All of us go through the anguish you are now suffering.  It is terribly hard to realize, "I have cancer".  But dear lady, cancer no longer means death.  Each of will have different issues and concerns but each of us must be in unison in not allowing the bully to scare us to death.  

    Chemo has not been too bad for me, but others have more issues.  None of us want to take poison but all of us want to live.  The docs will monitor and you must be vocal about issues you have, they can change dose amount, drip time and even chemo to customize it to your needs, your cancer your input.  Guess my biggest suggestion is to become familiar with your cancer stage etc. Read your reports from the doctor.  If you need second opinion, get one.  Read this site, surf internet for medical info from reliable sources (I usually go to research universities) and learn about your disease. Many women on this site are so knowledgeable they must be finisihing up their internship soon, as they have studied to learn about our disease and share information and sites to review for information. From a strong knowledge base, chose your treatment.  

    You will do it.  I felt the same way when I first got cancer but now I am at war and planning battles.  Right now the good guys are winning, yay.

  • Peggylee
    Peggylee Member Posts: 13
    brissance said:

    It is Scary

    All of us go through the anguish you are now suffering.  It is terribly hard to realize, "I have cancer".  But dear lady, cancer no longer means death.  Each of will have different issues and concerns but each of us must be in unison in not allowing the bully to scare us to death.  

    Chemo has not been too bad for me, but others have more issues.  None of us want to take poison but all of us want to live.  The docs will monitor and you must be vocal about issues you have, they can change dose amount, drip time and even chemo to customize it to your needs, your cancer your input.  Guess my biggest suggestion is to become familiar with your cancer stage etc. Read your reports from the doctor.  If you need second opinion, get one.  Read this site, surf internet for medical info from reliable sources (I usually go to research universities) and learn about your disease. Many women on this site are so knowledgeable they must be finisihing up their internship soon, as they have studied to learn about our disease and share information and sites to review for information. From a strong knowledge base, chose your treatment.  

    You will do it.  I felt the same way when I first got cancer but now I am at war and planning battles.  Right now the good guys are winning, yay.

    Thanks for encouragement brissance

    I forgot to mention I did meet the oncologist surgeon, he was the most compassionate, sweet man I've ever met. He held my hand prior to  surgery while we discussed whether to remove lymph nodes.  I told him I wanted quality of life not deal with swelling etc.  Re: second opinion... I assume I can't go out of my insurance plan. Would I get an honest opinion from another oncologist that are affiliated with my insurance?

    I have been having sporadic Sharp pains in my abdomen since surgery. Is this normal? Could It Be I'm overdoing? Or is it healing?

     

     

  • brissance
    brissance Member Posts: 192
    edited July 2016 #69
    Peggylee said:

    Thanks for encouragement brissance

    I forgot to mention I did meet the oncologist surgeon, he was the most compassionate, sweet man I've ever met. He held my hand prior to  surgery while we discussed whether to remove lymph nodes.  I told him I wanted quality of life not deal with swelling etc.  Re: second opinion... I assume I can't go out of my insurance plan. Would I get an honest opinion from another oncologist that are affiliated with my insurance?

    I have been having sporadic Sharp pains in my abdomen since surgery. Is this normal? Could It Be I'm overdoing? Or is it healing?

     

     

    Yes to All ;)

    Having faith in your doc is soo important on so many levels.  Feel fortunate you like him.

    I still have those pains and it is almost 6 months.  I would mention it, I did.  It depends on how debilitating the pain is... discuss it. 

    I did not get a second opinion as I had confidence in my doctor and the hospital.  I do not think there would be an issue at all in going to another doctor in the same insurance plan...  Doctors' honestly want us to get better, at least most do.  (You can always ask a suggestion from on Oncology nurse.  Honestly, I trust my doc enough I would ask him directly. Someone else on the site will have more and better info on this matter as I am speculating on an issue I have not faced

    Hang in there I am sure you will get some great info very soon from our group.

    Take care and God bless..   Patty

  • Editgrl
    Editgrl Member Posts: 903
    Peggylee said:

    Had my surgery July 6th,  three weeks Wednesday I'm recovering well. Sent me home the next day miserable that night with cramps and gas.  Sent me home with a catheter I had to wear for 4 days being it was a weekend. Diagnosed with papillary serous Adenocarcinoma stage 1B grade 3.  What's the differences between that and carcinoma I don't know. I realize I'm fortunate to have caught this early. Due to the fact I left my lymph nodes they can't really stage it properly. They did say they would do chemo either way if left them in or not. I have an appointment to go to the oncologist this Wednesday. I don't really want to have chemo and I know they'll probably say radiation as well as they had mentioned it prior. Pathology report says tumor summary that lymph- vascular invasion present in the uterus.  This type of cancer has feelers that can spread to other organs. I have two holistic friends that are encouraging me to do gresson therapy.... there have been success and people have become cancer free. Has anyone heard of that? I doubt very much if I can do that as its a very strict diet with coffee enemas.  Doctor said without chemo it could come back in a year or 10 years they just don't know.  I suppose I'll have to give in to the chemo.  They did do the Lynch syndrome test as there has been cancer on Father's Side plus first cousins fortunately it came back negative which will be a relief for my children.

    Doc said chemo.... loose hair in two weeks may loose eyebrows and eyelashes.  Neoroprathy ... who knows what else side effects.  Please tell me what happened to you regarding  side effects. I know how it was for my father and father-in-law cousins... they didn't fare so well. It's very frightening, as you all know, to go through all this.

    I have heard of Gerson

    and yes, people have had success with it.  Some people have had success with just about every alternative and holistic treatment/diet there is for cancer, it is just that individual a disease.  And some people have success with chemo and radiation.

    The prospect of chemo is frightening as we all here can attest to.  However, side effects can vary widely.  If you'd like to see that for yourself, please read the thread titled "Ladies Going Through Chemo."  It will give you a really good idea of the wide range of side effects that you may or may not deal with.  I was pretty lucky, and my side effects were relatively minor.  Yes, I lost most of my hair, eyebrows, eyelashes.  I had intermittent stomach pains, mild neuropathy, nasty constipation at first.  But I never lost my appetite, had no food aversions, no overwhelming fatigue and only a bit of occasional queasiness.  As you may get tired of hearing, everyone reacts differently.

    As far as your holistic friends go, there are ways to use both natural and conventional methods to fight cancer, and in fact, many natural methods are complementary and can enhance "western" medicine.  I would recommend the book "Anti-Cancer" by David Servan-Shreiber.  No matter which way you decide to go with treatment, his book is very empowering, describing his own battle with cancer and what he did to combat it.  He does talk about diet, as well as other modalities, including exercise, yoga, meditation, etc.  The book was recommended to me when I was first diagnosed and it was well worth the time to read it.

    I personally have used an integrative approach, have had chemo and brachytherapy but I am also including a naturopathic oncologist as part of my cancer-fighting team now that I am NED.  We all find our own way through this crazy cancer jungle.  As Brissance said, get as familiar with your cancer/stage as possible.  Research as much as you can.  If having a second opinion will make you feel more confident in your decision, by all means get one.  Many insurance plans will cover a second opinion.

    And be sure to spend some time reading older posts.  There is a wealth of information here about almost any subject you can think of regarding cancer, treatment, side effects, etc.  And if you don't find the answer you're looking for, please ask.  So many here have gone through so much and are more than generous with their experiences.

    Chris

  • Peggylee
    Peggylee Member Posts: 13

    Hey  PHK, at four years out,

    Hey  PHK, at four years out, and lots of searches, this is the only place with information.  There is a TON of information on this site and you might want to read some of the older posts for information and advice.  Seriously, you could go back 3 years and learn a lot.  When I first found this site I read a lot of the posts and there was great information.  

    Please tell me where you find the Old Post 3 years ago. 

    Thanks

  • Editgrl
    Editgrl Member Posts: 903
    edited July 2016 #72
    Peggylee said:

    Please tell me where you find the Old Post 3 years ago. 

    Thanks

    Here is the link to the chemo post

    http://csn.cancer.org/node/296461

  • Peggylee
    Peggylee Member Posts: 13
    Editgrl said:

    Here is the link to the chemo post

    http://csn.cancer.org/node/296461

    Thanks for sharing Editgrl

    You look great so I assume your hair,  eyelashes, and eyebrows grew  back in.  Did it take long? thank you again for sharing.

  • Editgrl
    Editgrl Member Posts: 903
    Peggylee said:

    Thanks for sharing Editgrl

    You look great so I assume your hair,  eyelashes, and eyebrows grew  back in.  Did it take long? thank you again for sharing.

    Hair regrowth

     

    About 5 weeks after chemo, my hair started coming back in.  And it started coming in with a vengeance.  Head hair thicker and finer, eyelashes thicker.  But then my eyelashes thinned out a bit for a while.  Now, they are kinda back to normal.  

    My profile photo was taken at the end of April of this year, 4 1/2 months after chemo ended.  I had my first real haircut in almost a year at the beginning of this month, and I wear it short anyway, so that is pretty much back to the way it was pre-chemo.

  • Peggylee
    Peggylee Member Posts: 13
    edited August 2016 #75
    where did all of you go???

    I've  been  on here different times, don't see any new posts.  Hope all is well..... did you move somewhere else?

  • Editgrl
    Editgrl Member Posts: 903
    edited August 2016 #76
    We're all over the board...

    There may not be new posts on this particular thread.   Sometimes threads just peter out.  But there is plenty of activity on other threads on the board and please feel free to start one of your own if you have a question.  We're here!

    Also, make sure that you are logged in.  If you are not, you won't see that new posts have been made on the various threads though you will see the listing of the threads.