Cheese Update
Comments
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Thanks for the update. SoCheeseQueen57 said:Well..,
My oncologist is not ready to call this a reoccurrence yet. She said the "nodules" don't look like the typical presentation. I'm scheduled for paracentesis on 9/6. I went down the rabbit hole with her about HIPEC (the peritoneal chemo). She's against it. Says too little evidence in uterine cancer. But my research is saying different. Apparently centers of excellence at UPMC in Pittsburgh and MedStar in DC both doable. Anybody know of these programs? My PCP is researching for me. BTW, I'm still going to Spain on the 15th no matter what! Lots of crying and afraid I'll never dance at my son's wedding (he's not even engaged yet!) but trying to take one day at a time. Thanks for all of your support and encouragement
Thanks for the update. So much stress with this stuff. Sending you lots of hugs. It so frustrating at times. Just so you know, I have nodules and stuff for several years which they don't seem concerned about. So go to Spain and enjoy that trip! I'm from the Pittsburgh area so if you want to PM me. Also, I am glad to see you are being your own advocate. You have to be!
(((Hugs)))
Kathy
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THanksMAbound said:Sloan Kettering
Did you see this article?
https://www.mskcc.org/blog/heated-chemotherapy-using-robust-science-guide-clinical-decisions
Maybe one of these doctors at Sloan Kettering may know of a clinical trial that would be appropriate for someone with uterine rather than ovarian cancer. The article is 4 years old, but it's something they have/had an interest in.
Thanks MA. I've considered that but this surgery is so complicated that I'm not sure I'd want any yahoo with a knife practicing on me. Dr. Bartlett at UPMC has done thousands of these procedures. Although he might actually be participating in a clinical trial for uterine. You never know. I hope I don't have to find out but I've got a feeling this isn't just nothing.
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UPMC and HIPEC
CheeseQueen, I'll be asking about HIPEC on my next visit to UPMC, which I hope will be next week. (Waiting is so hard.) Last December, when my cancer had recurred and metastasized to my liver, I asked about additional surgery to remove the nodes, the larger mass, etc. "No, the cancer is now systemic." Well, apparently I have one spot on my liver, the rest of it is confined to my peritoneal cavity. Seems to me that with an ablation procedure for the liver, I could be a candidate for HIPEC. You all wouldn't believe the stuff I dream up for my care in the middle of the night, but I'll bet would!
May I ask if anyone has had a second surgery following chemo for recurrent/metastatic endometrial?
Oh how I wish I'd known back at the time of my D&C what I know now. I would've insisted that my cancer be treated the same way that Stage IV high grade serous ovarian cancer is treated. Cheese, are you at Fox Chase? Did you have your tumor profiled? My Caris report has a "clinical trials connector" link in it that I look at every day. They update every 24 hours with new trials coming online, too.
A new friend (15 years out from dual ovarian/uterine cancers) suggested that I take a look at the site below. I was talking with her about the lack of a "Susan G Komen" site for uterine cancer. I don't know how old this site is, but it looks like a good place for our support.They list a few clinical trials on their site; best is still clinicaltrials.gov.
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Glad your oncologist isn't using the R word
Cheese, I'm sorry about your CT results. I'm glad your oncologist is not willing to call the findings a recurrence at this point. I remember in 2009 being told by an ER doctor that I had metastatic cancer to the lung based on the results of a CT scan. Well, that was wrong! It took me a few months to get a correct diagnosis, which was eosinophilic pneumonia. In the meantime, I was given antibiotics for bacterial pneumonia, which I also didn't have. I took Levaquin for months for nothing only to find out that I needed months of prednisone for the eosinophilic pneumonia. I'm telling you this to underscore that diagnoses based on scans are risky and frequently wrong. You are fortunate that your oncologist is shrewd enough to know this and will leave no stone unturned.
I see that ascites can be caused by infection, inflammation, or injury in addition to cancer and other things:
http://www.webmd.com/digestive-disorders/paracentesis-17042#1.
You apparently have something going on, but it may turn out to be something you least expect. I had never heard of eosinophilic pneumonia before I was finally accurately diagnosed. As it turns out, I saw two pulmonologists--one locally, and one in Philly. Both had over 30 years experience and neither had seen more than a half a dozen cases in their combined over sixty years of experience.
Have a fabulous time in Spain!
Wishing you all the best,
MoeKay
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ThanksBeebster said:UPMC and HIPEC
CheeseQueen, I'll be asking about HIPEC on my next visit to UPMC, which I hope will be next week. (Waiting is so hard.) Last December, when my cancer had recurred and metastasized to my liver, I asked about additional surgery to remove the nodes, the larger mass, etc. "No, the cancer is now systemic." Well, apparently I have one spot on my liver, the rest of it is confined to my peritoneal cavity. Seems to me that with an ablation procedure for the liver, I could be a candidate for HIPEC. You all wouldn't believe the stuff I dream up for my care in the middle of the night, but I'll bet would!
May I ask if anyone has had a second surgery following chemo for recurrent/metastatic endometrial?
Oh how I wish I'd known back at the time of my D&C what I know now. I would've insisted that my cancer be treated the same way that Stage IV high grade serous ovarian cancer is treated. Cheese, are you at Fox Chase? Did you have your tumor profiled? My Caris report has a "clinical trials connector" link in it that I look at every day. They update every 24 hours with new trials coming online, too.
A new friend (15 years out from dual ovarian/uterine cancers) suggested that I take a look at the site below. I was talking with her about the lack of a "Susan G Komen" site for uterine cancer. I don't know how old this site is, but it looks like a good place for our support.They list a few clinical trials on their site; best is still clinicaltrials.gov.
yes Beebster, I'm at Fox Chase. I know not of Caris report. My oncologist did mention something about futher genetic testing. Could you elaborate about this report, etc. I'll be interested to find out what you learn at UPMC. From what I've read apparently they are hesitant to do procedure if you have metastasis to other organs. I did talk briefly to Dr Bartletts assistant. Message me if you want direct line. She said most procedures they do is related to appendix cancer. I just can't help but think maybe my Gyn/onc might not be so much of an expert compared to one who specializes in peritoneal as Dr Bartlett does. And I don't think they do many of these procedures at Fox Chase nor Penn. im thankful for all info you can provide and good luck to you.
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ThanksMoeKay said:Glad your oncologist isn't using the R word
Cheese, I'm sorry about your CT results. I'm glad your oncologist is not willing to call the findings a recurrence at this point. I remember in 2009 being told by an ER doctor that I had metastatic cancer to the lung based on the results of a CT scan. Well, that was wrong! It took me a few months to get a correct diagnosis, which was eosinophilic pneumonia. In the meantime, I was given antibiotics for bacterial pneumonia, which I also didn't have. I took Levaquin for months for nothing only to find out that I needed months of prednisone for the eosinophilic pneumonia. I'm telling you this to underscore that diagnoses based on scans are risky and frequently wrong. You are fortunate that your oncologist is shrewd enough to know this and will leave no stone unturned.
I see that ascites can be caused by infection, inflammation, or injury in addition to cancer and other things:
http://www.webmd.com/digestive-disorders/paracentesis-17042#1.
You apparently have something going on, but it may turn out to be something you least expect. I had never heard of eosinophilic pneumonia before I was finally accurately diagnosed. As it turns out, I saw two pulmonologists--one locally, and one in Philly. Both had over 30 years experience and neither had seen more than a half a dozen cases in their combined over sixty years of experience.
Have a fabulous time in Spain!
Wishing you all the best,
MoeKay
thanks MoeKay for encouragement. Dr said it could be due to inflammation due to scarring and I did have the sacral fracture and probably more recently a lumbar fracture I've recovered nicely from both. Only real symptoms I'm having are aching, burning pain in my right groin area which they said could be scarring, abdominal bloating, early satiety, and some fatigue. I'm still a little anemic but not really too bad. I hope it's something else. I haven't had enough time. Although no matter the age when your number is up, you never feel you had enough time. : )
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Always something to learn
This thread has been so interesting and I just want to say thank you from myself, at least, to all who are sharing. You never know what information helps who. It's so reassuring to have a place to come to learn and get different perspectives on the problems we face. I hope to not ever need a lot of this stuff, but I think it calms me a bit before going through my next round testing and the inevitable anxiety that something unwanted will be found. I know if I need help, encouragement, or understanding that I have a place to turn. Just wanted you all to know that I think the world of you all!
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Agree MAMAbound said:Always something to learn
This thread has been so interesting and I just want to say thank you from myself, at least, to all who are sharing. You never know what information helps who. It's so reassuring to have a place to come to learn and get different perspectives on the problems we face. I hope to not ever need a lot of this stuff, but I think it calms me a bit before going through my next round testing and the inevitable anxiety that something unwanted will be found. I know if I need help, encouragement, or understanding that I have a place to turn. Just wanted you all to know that I think the world of you all!
im convinced I wouldn't be here without you gals! So, I'm thinking of walking the 5k National Race to end Women's Cancer and attending their free forum the day before. My son lives in Silver Spring so I could crash with him. Anybody else going? I've decided either way this thing turns out I'm not doing anything til after the holidays. If this is going to potentially be my last holiday with my family I'm not going to be sick from chemo or recovering from surgery. The battle will have to wait until 2018! http://www.foundationforwomenscancer.org/community-calendar/
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InflammationCheeseQueen57 said:Thanks
thanks MoeKay for encouragement. Dr said it could be due to inflammation due to scarring and I did have the sacral fracture and probably more recently a lumbar fracture I've recovered nicely from both. Only real symptoms I'm having are aching, burning pain in my right groin area which they said could be scarring, abdominal bloating, early satiety, and some fatigue. I'm still a little anemic but not really too bad. I hope it's something else. I haven't had enough time. Although no matter the age when your number is up, you never feel you had enough time. : )
Cheese,
I don't know if you saw my previous reply, but I have severe inflammation. I was ok for awhile, then back in June I started to get the pain until I was in pain every single day sometimes severe. I had a CT scan done and even though I presented to my gyne/onc that I am now in pain everyday (which I didn't have before), he never performed any type of pelvic exam. He only read my results and gave me a script for stomach messages. i said WHAT? My CT scan shows that there is a soft tissue nodule in the pelvis measuring 1.1x1.0 which is new from prior. Also There is progressive nodular soft tissue in the LEFT hemipelvis inseparaable from the LEFT lateral wall of the rectum, LEFT vaginal cuff and LEFT posterior bladder wall. This soft tissue extends to the level the LEFT mesorectal fascia nad precoccygeal space. My gyne/onc said my CT was unimpressive. I am seeking a second opinion and also going to another gyne to get a pelvic exam since I haven't had one for over 2 years.
From what I understand about inflammation/scarring, inflammation from radiation cannot be helped with antiinflammatories. They call it cluster inflammation which is scarring caused by the radiation. I was referred to a pain clinic but instead sought out accupuncture. The accupuncture greatly decreased my pain but now have discomfort daily (which is a lot better than discomfort and pain).
I want you to have a fantastic trip in Spain. I will be praying for you that this is only inflammation.
Hugs!
Kathy
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ThanksKaleena said:Inflammation
Cheese,
I don't know if you saw my previous reply, but I have severe inflammation. I was ok for awhile, then back in June I started to get the pain until I was in pain every single day sometimes severe. I had a CT scan done and even though I presented to my gyne/onc that I am now in pain everyday (which I didn't have before), he never performed any type of pelvic exam. He only read my results and gave me a script for stomach messages. i said WHAT? My CT scan shows that there is a soft tissue nodule in the pelvis measuring 1.1x1.0 which is new from prior. Also There is progressive nodular soft tissue in the LEFT hemipelvis inseparaable from the LEFT lateral wall of the rectum, LEFT vaginal cuff and LEFT posterior bladder wall. This soft tissue extends to the level the LEFT mesorectal fascia nad precoccygeal space. My gyne/onc said my CT was unimpressive. I am seeking a second opinion and also going to another gyne to get a pelvic exam since I haven't had one for over 2 years.
From what I understand about inflammation/scarring, inflammation from radiation cannot be helped with antiinflammatories. They call it cluster inflammation which is scarring caused by the radiation. I was referred to a pain clinic but instead sought out accupuncture. The accupuncture greatly decreased my pain but now have discomfort daily (which is a lot better than discomfort and pain).
I want you to have a fantastic trip in Spain. I will be praying for you that this is only inflammation.
Hugs!
Kathy
Thanks so much Kathy. I pray you're right about the inflammation and not reoccurrence. I actually can't take any anti inflammatories because of the Eliquis but extra strength Tylenol does seem to work somewhat. I just have to be careful about the liver effects with that.
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I love your picture, Queen ofCheeseQueen57 said:I've missed you Eldri
Im so happy to hear what you've been doing. You go girl! Where in Florida?
I love your picture, Queen of the Cheese!! I have been doing PDG (pretty damn good). We bought a house in a 55+ community in Tarpon Springs, just north of Clearwater. I am going to have all my oncology records transferred to Moffitt Cancer Center in Tampa. My oncologist/gyno is no longer seeing patients. After one of his PA's died this past winter, he decided he is only doing surgery so I have to find another oncologist anyway. We are going to spend December through May in Florida and the rest of the year at our lake house here in northern Wisconsin where it's hard to find any kind of doctor, much less a specialist. So, I figure Tampa is the best place for me.
I'm sending you all my positive thoughts and good vibs that this is not a recurrence just a little blip in the road to full recovery!
Love,
Eldri
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Sounds wonderfulEZLiving66 said:I love your picture, Queen of
I love your picture, Queen of the Cheese!! I have been doing PDG (pretty damn good). We bought a house in a 55+ community in Tarpon Springs, just north of Clearwater. I am going to have all my oncology records transferred to Moffitt Cancer Center in Tampa. My oncologist/gyno is no longer seeing patients. After one of his PA's died this past winter, he decided he is only doing surgery so I have to find another oncologist anyway. We are going to spend December through May in Florida and the rest of the year at our lake house here in northern Wisconsin where it's hard to find any kind of doctor, much less a specialist. So, I figure Tampa is the best place for me.
I'm sending you all my positive thoughts and good vibs that this is not a recurrence just a little blip in the road to full recovery!
Love,
Eldri
Eldri!
sounds like a wonderful life! Good for you! But when will we get to see a recent beautiful picture of you? You must have one from the wedding or lounging by the pool in FL!
Thanks for the good wishes. I'm hoping not to have to get my battle armour on again so soon.
Pinconning Cheese Queen 1979, Pinconning, Michigan. Home of Pinconning Cheese.
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CheeseQueen57CheeseQueen57 said:Agree MA
im convinced I wouldn't be here without you gals! So, I'm thinking of walking the 5k National Race to end Women's Cancer and attending their free forum the day before. My son lives in Silver Spring so I could crash with him. Anybody else going? I've decided either way this thing turns out I'm not doing anything til after the holidays. If this is going to potentially be my last holiday with my family I'm not going to be sick from chemo or recovering from surgery. The battle will have to wait until 2018! http://www.foundationforwomenscancer.org/community-calendar/
I hate to see that you're going to wait to take care of this. The peritoneum was one of the places that my cancer metastasized to, and it grew 874% in just two and a half months if you go by the difference in the CA-125 results. In Feb., I was being told that my CA-125 was in the normal range, and two weeks after my early April surgery, it was higher than it had been when I was diagnosed with stage IVb UPSC back in May, 2010. By late March of this year, it had wrapped itself around my ascending colon and I had to have surgery within a week to make sure it wouldn't cause a bowel obstruction. If you wait until 2018 for treatment, something like this might happen to you, and it might be worse than getting treated for it now would be. Your cancer could already be worse than mine if you have ascites. I didn't have that. I can understand not wanting to go through all the treatment again. I didn't want to, either. I told my husband after my surgery that I could never go through another surgery like this again. I had two resections of my intestines and had my abdominal wall rebuilt in my last surgery. In 2010, I had cancer removed from my small intestine plus a complete hysterectomy, bilateral salpingo-oopherectomy, and a cholecystectomy for gallstones plus an appendectomy. Both times, I had the same two surgeons. I need to put an end to this! My chemo does seem to be working when I can have it. I have to go Wed. and see what is going to be done to me this time since I had an allergic reaction to Carboplatin the last time. I've missed two doses of Gemzar, one for my vacation in July and one in August because of low white blood cells and platelets, plus I had a one week delay after my first round for low white blood cells, low hemoglobin, and low platelets. It's not easy but I'm making progress.
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Appreciate your commentspinky104 said:CheeseQueen57
I hate to see that you're going to wait to take care of this. The peritoneum was one of the places that my cancer metastasized to, and it grew 874% in just two and a half months if you go by the difference in the CA-125 results. In Feb., I was being told that my CA-125 was in the normal range, and two weeks after my early April surgery, it was higher than it had been when I was diagnosed with stage IVb UPSC back in May, 2010. By late March of this year, it had wrapped itself around my ascending colon and I had to have surgery within a week to make sure it wouldn't cause a bowel obstruction. If you wait until 2018 for treatment, something like this might happen to you, and it might be worse than getting treated for it now would be. Your cancer could already be worse than mine if you have ascites. I didn't have that. I can understand not wanting to go through all the treatment again. I didn't want to, either. I told my husband after my surgery that I could never go through another surgery like this again. I had two resections of my intestines and had my abdominal wall rebuilt in my last surgery. In 2010, I had cancer removed from my small intestine plus a complete hysterectomy, bilateral salpingo-oopherectomy, and a cholecystectomy for gallstones plus an appendectomy. Both times, I had the same two surgeons. I need to put an end to this! My chemo does seem to be working when I can have it. I have to go Wed. and see what is going to be done to me this time since I had an allergic reaction to Carboplatin the last time. I've missed two doses of Gemzar, one for my vacation in July and one in August because of low white blood cells and platelets, plus I had a one week delay after my first round for low white blood cells, low hemoglobin, and low platelets. It's not easy but I'm making progress.
Hi Pinky
Thanks for sharing your experience. I'm definitely going to Spain but if I get bad news, I'll start the ball rolling. But I'm definitely going to get a second opinion and that will take some time. I'm not willing to just jump on the systemic chemo train again. And I'm going to get some further genetic testing. Depending on how long this all takes... I'm hoping it will not come to all this but I'd sure like to enjoy the holidays because I really couldn't last year. Prayers for you dear sister.
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CheeseQueen57
Thank you for your prayers. You should definitely take your vacation. I skipped a week of chemo so I could do that in July. I missed my annual vacation one year when my husband had to have a mass taken off his skull (it turned out to be something he'd had since birth and was benignJ), but I was irritated all year that I missed my vacation. I am getting my genetic testing done, too. It's probably finished but I won't see my GYN/Onc. who ordered it until next month. My chemo is being done by an oncologist at the hospital where I used to work. I can't wait to find out what it says. I've already had genetic testing for Lynch syndrome, which turned out negative. My cousin had breast cancer this year, my mother had it twice, once in the seventies and once in the eighties, and my granmother had it in both breasts at the same time in the sixties. And yet, my cousin's genetic testing came out negative. My half sister died of lymphoma and my father lived for an additional 12 years after having prostate cancer. There's definitely something going on in the family, whether any of the testing comes out positive or not. I understand the genetic testing is done relatively quickly, so that shouldn't hold you up too much.
I wish you luck with your cancer and I hope you have a wonderful vacation.
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Hello Cheese
The 15th is really just around the corner and since your oncologist is not ready to call this a recurrence yet, than I'm not going to either. Have a wonderful trip. Easy to say don't worry, enjoy your trip, etc. Remember there is nothing you can do about what is going on inside you for now. I hope you find someone who can explain to you just what is going on so you can know something before you leave and not have the unknown hanging around. Sometimes I think oncologists don't share enough of their WHY they conclude this or that and that is really what we need to hear so we can understand. You could touch base with them again and express your concerns. Just say you don't understand why this isn't impressive. Make them explain!
Adios.
Suzanne
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My personal feelings not based on any realityDouble Whammy said:Hello Cheese
The 15th is really just around the corner and since your oncologist is not ready to call this a recurrence yet, than I'm not going to either. Have a wonderful trip. Easy to say don't worry, enjoy your trip, etc. Remember there is nothing you can do about what is going on inside you for now. I hope you find someone who can explain to you just what is going on so you can know something before you leave and not have the unknown hanging around. Sometimes I think oncologists don't share enough of their WHY they conclude this or that and that is really what we need to hear so we can understand. You could touch base with them again and express your concerns. Just say you don't understand why this isn't impressive. Make them explain!
Adios.
Suzanne
The way she explained it that this isn't the usual presentation of peritoneal cancer. She said there's almost some kind of stranding vs nodules that she (my oncologist ) and gyn/onc are questioning. They want to be sure it's a reoccurrence although the radiologist called it on the CT scan. My personal feeling that I'm afraid it is and they just want the paracentesis to confirm it before starting systemic chemo,which from what I'm reading has a dismal rate of success.
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I've hit the reoccurence bingo big time
Well, my oncologist called me and said the ascites sample they got in the paracentesis contained cancer cells....so bingo....peritoneal metastasis! I will discuss options with her when I return from Spain on October 4. I've decided not to tell my son and his girfriend until after our trip. He will have many questions that I will not be able to answer at this point so why spoil the trip for them. My husband, of course, knows. Any and all advice is greatly appreciated and thanks for taking this bumpy ride with me. I'm afraid I know too much what to expect. I'm just sad for my husband and son.
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Ah, crap!
Ah, crap! Were they able to get any more usable information ? Like whether the nodules have anything to do with it, or what the point of origin might be? I'm so, SO sorry but know you'll get good information and pursue the best available treatment. New stuff is coming along every day - I just wish you didn't have to deal with it. Best always, B
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