Cancer: it ain't fun but sure as hell is interesting! (today's onc appt.)

lindaprocopio
lindaprocopio Member Posts: 1,980
edited March 2014 in Uterine Cancer #1
I swear my body must be incredibly wierd and unique. I met with my chemo-onc today to review Monday's CT/PET results. He did a side-by-side comparison of my CT/PET slides from back in November 2009 when these same 2 nodes last lit up. Both are considerably smaller than they were back in November (although of course, they weren't lit up at all back in February 2010 when I had that amazing NED CT/PET). So he said we're still in better shape than we were in November and I did get that glorious 4-month chemo break, so it was worth it to me.

What made this visit so surreal is that my chemo-onc said that he just NEVER sees endometrial cancer metastisize to the inguinal nodes, which usually light up for breast cancer. Although he said this is highly unlikely, he said that we COULD be dealing with a 2nd primary cancer: breast cancer. Highly unusual, and very unlikely as I recently had a clear mammogram and nothing in my breasts lit up on Monday's PET,...but he just feels that particular lymph node lighting up so bright on the PET twice is just strange. (And yet my gyne-onc always feels under my armpits for any swellings, etc.,... so how unusual really IS it???)

But here's the kicker: He said that if this was a 2nd primary cancer INSTEAD of endometrial cancer mets, this would be VERY good news for me. Breast cancer is curable; recurrent endometrial cancer isn't. Who would ever think that a 2nd entirely different cancer could be GOOD news???

So the plan is to cut that node out and biopsy it and find out what's going on. Maybe I'll get super-lucky and it will be benign. And if it is cancerous, I'll be glad to have it out of my body. Plus he said we'd do HER2 testing, etc. on the new tissue which will help guide our treatment decisions going forward. Because this particular node is associated almost always with breast cancer, the surgery would be done by a breast cancer oncologist/surgeon since he wouldd have the most experience. Unfotunately, this surgeon just went away on a 3-week vacation, but my chemo-onc is going to call him for a referral. But I'm thinking that I will be leaving for my cruise next week and not back until the 5th, and my chemo-onc is going away while I am gone and not back until June 10th, so I'll bet it'll take the 3 weeks until this surgeon is back for them to schedule the surgery anyway.

Although he didn't want us to get too far ahead of ourselves, we talked about what treatment would be next if the node comes up malignant. He things fractionated weekly carbo/taxol, but didn't rule out doxil. He did say that he wouldn't consider radiation under my arm since we would be ignoring the tiny para-aortic node that also lit up, and that we should go with some sort of chemo. He said that he likes to give hormone therapy only when you have no evidence of disease, to hold you in remission longer (an area where my gyne-onc disagrees with him.)

I see my wonderful gyne-onc on Monday for his input into this mysterious saga. never a dull moment, eh?
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Comments

  • kanary01
    kanary01 Member Posts: 21
    Hi Linda
    First I hop the

    Hi Linda
    First I hop the news you got turns out to be good, I mean which ever way is the best for you. Doctors can drive you nuts. I never knew that there was a chemo/Onc and a gyn/Onc. My Gyn/Onc did it all.
    You are so right Cancer is interesting and so confusing. I will refresh you memory. I was told over and over that I did not have Cancer...and then after insisting on Hysorectomy(sp) after botched D&C and many other tests. Path taken during the surgery (robotic) was good so no nodes were taken..and I was told I was cancer free..Yipee! A week later when I went back for post op I was told the final path came back and I had stage 3c Endo Cancer. The gyn/onc said I could wait 2 months and have nodes taken out or just treat the Cancer as if it was found in the nodes. I choose to have the agressive treatment. Had the surgery started 3 rounds of Chemo in May & June 53 treatments of radiation (27 Pelvis -26 Abdomen)and 5 internal high dose..Sept I did another 3 Cycles of Chemo and was finished In Nov. At my first 3 month check up in March the doc said he had not changed me to 3A because he was hopefull that we got rid of anything that might have been left or missed. He is not really big on giving info or answering questions. I have my second post treatment visit next week and I have been trying to write questions down for him...but I really don't know all that much myself...Like are you suppose to get a ct scan or mri or chest xray after so much time?? I asked the nurse if I was now considered a one year survivor since my surgery was last April. She said No that you are not considered a suvivor untill one year after the end of treatment. I then asked her well where am I then and she said remission...I read somewhere on here that they should do chest xray each year. Is that correct? He does do a pap and a C125 each visit. They never did a C125 before surgery and after surgery it was 4 and has stayed between 4 and 5. Is there anything I should ask the doctor. I am so scared of a recurrance and like many of the women on here my family is in another state so there is just my husband and I. I try to stay positive but some days it is so hard to do.
    I welcome any feedback from all.
    And Linda I will be praying for you. I read about your cruise and I must tell you I would not even be brave enough to do that. We will be taking a trip to Ocean City for a week (2 hour drive) we are going for the memorial day week. I am so antsy..liek afraid to be even that far from home in case I get sick. I guess I really ned help..
    Mary
  • Always Hopeful
    Always Hopeful Member Posts: 234
    How do you keep your head together!
    What an interesting day you had, Linda. Your head must be spinning! Let's hope that your gyne-onc can clear some things up for you on Monday. In the meantime, enjoy your garden and grandkids...prayers are with you!

    Peace and hope,

    JJ
  • maggie_wilson
    maggie_wilson Member Posts: 596
    cancer: it ain't fun

    geeze, what a post!!! and what an unbelievable trip your body is taking you on. nodes lighting up and then not, then lighting up again, possible breast cancer in a node that is considered good news rather than uterine mets, surgery and biopsy when it can be fit in between vacations, then disparate opinions re:hormone therapy between doctors, then ........the beat goes on. yet, this last visit could portend good--maybe no cancer in the node at all, and therefore no treatment. will be very interested to learn what your gyn-onc has to say monday about all this. sounds like you're in pretty good spirits, linda, given everything; i hope so. you certainly have your share of absurdities; but maybe so have we all when we look at where we began, and how we got to where we are now. cancer is crazy bad. it's a perfect time to go on a cruise.......

    take good care.
    sisterhood,
    maggie
  • livealot
    livealot Member Posts: 19

    cancer: it ain't fun

    geeze, what a post!!! and what an unbelievable trip your body is taking you on. nodes lighting up and then not, then lighting up again, possible breast cancer in a node that is considered good news rather than uterine mets, surgery and biopsy when it can be fit in between vacations, then disparate opinions re:hormone therapy between doctors, then ........the beat goes on. yet, this last visit could portend good--maybe no cancer in the node at all, and therefore no treatment. will be very interested to learn what your gyn-onc has to say monday about all this. sounds like you're in pretty good spirits, linda, given everything; i hope so. you certainly have your share of absurdities; but maybe so have we all when we look at where we began, and how we got to where we are now. cancer is crazy bad. it's a perfect time to go on a cruise.......

    take good care.
    sisterhood,
    maggie

    no fun...and back again
    Hi all you amazing women! I've been following your posts off and on for several months and posted only a couple of times. I think I was trying to forget about cancer altogether and reading the board wasn't helping me. I'm 51 with 3 kids, 23/21/18 and a truly incredible husband. I have UPSC- a very similar story to Linda's and about the same time frame.Early menapause and cells found in a routine PAP smear. I filled out most of the "about me" part of the site. in short, diagnosed with uterine cancer 12/08. had lap. radical hysterectomy 12/17/08. Path. did not state UPSC at the time. MD said all areas were clear and it was stage 1A. he failed to see a couple of large tumors that were already present around the colon area. symptoms in April brought me to my internist and CT to find cancer all over my peritoneum. Found wonderful onc. and new gyn./onc. who performed an optimal debulking surg. on 4/29/09 with 2 colon resections, appendectomy, and removal of various pieces of other organs. I had 6 sessions of carboplatin/taxol and had my last session on 9/14/09. I've been doing very well and loving life. really enjoying every minute of it! pretty much stopped working, taking art lessons in oils- something I've always wanted to do, gardening, traveling to see family a lot, etc. On my last 3 mon. check (end of March)at which time I also had my CT scan done, my CA125 had gone up from 6 to 15. CT completely clear. Onc. said no problem but we'll check again in 4 weeks for my peace of mind. it went up to 39. 2 weeks later, 59. this was last wed. Did a PET/CT on Wed. and got results this morning. 4 significant focal points- about 1-3 cm. all in the peritoneum- none in the lungs, lymph nodes, etc. saw gyn./onc. today- those docs were busy today!- he felt surg. was not indicated and chemo is in order again. it's only been 7 mos. since end of treatment. I told him this was a real pisser! he agreed. I'll see the onc. tomorrow and discuss what drugs we need this time. I thought carbo/taxol was the state of the art for this stuff. WHERE DO WE GO FROM HERE? ANY ADVICE ON OTHER DRUGS? Although I have the most amazing support system anyone could ever hope for- family and friends- I feel like I really need to connect with all of you for advice and support. it is obvious you are all such strong and loving women who know what this is about and care for each other. I've come to embrace the fact that this is something I will be living with and know that this is a chronic condition. I am certainly willing to fight the fight, I really do just want to come out the other end of this as long as I can.
    Thank you all so much for the posts that are so encouraging to read and really make me smile. And thank you all for the posts that are not so fun but are the reality of our lives. I hope I can help others the way you have helped me. I'm ready to join you all now.
    Elizabeth
  • Ro10
    Ro10 Member Posts: 1,561
    Linda what a roller coaster ride you continue on
    Wow, what news today!!!! Is it good news or bad news?????? That is some question to answer. I have always been told that my body is "unique", but I think yours is even more "unique". You said that endometrial cancer does not metasize to inguinal nodes, but the doctors check there with each appointment (along with other lymph node areas). Makes you wonder.

    I hope you can go on your cruise and forget about this situation, but I know that will be hard. I hope your Monday appointment can give you some peace of mind. You remain in my thoughts and prayers. In peace and caring.
  • Ro10
    Ro10 Member Posts: 1,561
    livealot said:

    no fun...and back again
    Hi all you amazing women! I've been following your posts off and on for several months and posted only a couple of times. I think I was trying to forget about cancer altogether and reading the board wasn't helping me. I'm 51 with 3 kids, 23/21/18 and a truly incredible husband. I have UPSC- a very similar story to Linda's and about the same time frame.Early menapause and cells found in a routine PAP smear. I filled out most of the "about me" part of the site. in short, diagnosed with uterine cancer 12/08. had lap. radical hysterectomy 12/17/08. Path. did not state UPSC at the time. MD said all areas were clear and it was stage 1A. he failed to see a couple of large tumors that were already present around the colon area. symptoms in April brought me to my internist and CT to find cancer all over my peritoneum. Found wonderful onc. and new gyn./onc. who performed an optimal debulking surg. on 4/29/09 with 2 colon resections, appendectomy, and removal of various pieces of other organs. I had 6 sessions of carboplatin/taxol and had my last session on 9/14/09. I've been doing very well and loving life. really enjoying every minute of it! pretty much stopped working, taking art lessons in oils- something I've always wanted to do, gardening, traveling to see family a lot, etc. On my last 3 mon. check (end of March)at which time I also had my CT scan done, my CA125 had gone up from 6 to 15. CT completely clear. Onc. said no problem but we'll check again in 4 weeks for my peace of mind. it went up to 39. 2 weeks later, 59. this was last wed. Did a PET/CT on Wed. and got results this morning. 4 significant focal points- about 1-3 cm. all in the peritoneum- none in the lungs, lymph nodes, etc. saw gyn./onc. today- those docs were busy today!- he felt surg. was not indicated and chemo is in order again. it's only been 7 mos. since end of treatment. I told him this was a real pisser! he agreed. I'll see the onc. tomorrow and discuss what drugs we need this time. I thought carbo/taxol was the state of the art for this stuff. WHERE DO WE GO FROM HERE? ANY ADVICE ON OTHER DRUGS? Although I have the most amazing support system anyone could ever hope for- family and friends- I feel like I really need to connect with all of you for advice and support. it is obvious you are all such strong and loving women who know what this is about and care for each other. I've come to embrace the fact that this is something I will be living with and know that this is a chronic condition. I am certainly willing to fight the fight, I really do just want to come out the other end of this as long as I can.
    Thank you all so much for the posts that are so encouraging to read and really make me smile. And thank you all for the posts that are not so fun but are the reality of our lives. I hope I can help others the way you have helped me. I'm ready to join you all now.
    Elizabeth

    Elizabeth , sorry you are back again
    Your story is very much like mine. I had my total hysterectomy 1/09. I was diagnosed with Stage III-C UPSC. I finished all of my chemo and radiation 8/09. My CA 125 has been gradually increasing from my first post treatment check-up. The gyn/ono told me I had a slow recurrence and would probably have to go back on treatment within the year. That was in November he told me that. He said if it was 6 months after my last chemo, I could go back on Taxol/ Carbo. If it was less than 6 months, then he would discuss another drug, but had not decided which one it would be. He said he would like to give drugs that are used for ovarian cancer, but the insurance companies would not approve them. Even though my Ca 125 continues to rise (last one was 140) he does not treat the number, but only if the CAT scan shows something. I have 3 suspicious areas that are being watched. So I am just under observation for now, and keep hoping that the CAT scan is unchanged. I go for my next lab and CAT scan June 1st, then to the doctor June 8th for results.

    I am happy you have a great support system. That is so important. I am so fortunate to have a great husband and support from family and friends, too. When I was initially diagnosed the gyn/ono told me this could be treated like a chronic disease, and that is my mind set, that it is something that will need treatment from time to time. Keep the postive attitude, as it will take you a long way.

    Good luck with your appointment with the onocologist. I will be anxious to hear what he recommends. In peace and caring.
  • MoeKay
    MoeKay Member Posts: 409 Member
    Ro10 said:

    Linda what a roller coaster ride you continue on
    Wow, what news today!!!! Is it good news or bad news?????? That is some question to answer. I have always been told that my body is "unique", but I think yours is even more "unique". You said that endometrial cancer does not metasize to inguinal nodes, but the doctors check there with each appointment (along with other lymph node areas). Makes you wonder.

    I hope you can go on your cruise and forget about this situation, but I know that will be hard. I hope your Monday appointment can give you some peace of mind. You remain in my thoughts and prayers. In peace and caring.

    Sounds Like Pretty Good News
    Linda,

    All in all, I think your news is quite good. I will keep my fingers crossed for benign biopsy results, but if it has to be a malignancy, I hope it's something easily curable. I did see where the CA-125 can be elevated in breast cancer: http://www.medicinenet.com/ca_125/page2.htm#tocf. Yes, a second primary cancer (assuming it is one that has a high cure rate) is always preferable to a recurrence of endometrial cancer. My mother actually had two separate breast cancer diagnoses a number of years after treatment for cervical cancer.

    Best of luck at your next appointment on Monday, Linda. I too have these crazy medical sagas that defy all odds or explanation. I'm dealing with one right now involving an extremely rare lung condition (think orphan disease). The prednisone I've been on for about 6 months has now caused a hip/thigh stress reaction that has put me on crutches for 6 weeks. At the outset of this saga, I was told I had metastatic cancer to the lung (wrong) and "regular" pneumonia (wrong).

    I hope you have a fabulous cruise!

    Maureen
  • norma2
    norma2 Member Posts: 479
    Interesting ain't the half of it!!!
    Linda,

    Every time I feel the slightest ache or pain I think it is cancer crouched there like a tiger waiting to spring out of the tall grass. Makes for an interesting life. I am constantly giving myself pep talks about how I should not dwell on it.

    Reading your post the thought occurred to me that you sound pretty darned healthy. Except for the nodes lighting up your body doesn't seem to have a lot wrong with it. So that is a positive sign. All the healthy parts are working fine. I am hoping for it being nothing more than an anomaly. Something to watch but, not a threat.

    Thinking of you, sweetie. And praying it is nothing more that some renegade node that will quickly succumb to treatment. {{{Linda}}}} here is hoping the best for you.
  • Kaleena
    Kaleena Member Posts: 2,083 Member
    kanary01 said:

    Hi Linda
    First I hop the

    Hi Linda
    First I hop the news you got turns out to be good, I mean which ever way is the best for you. Doctors can drive you nuts. I never knew that there was a chemo/Onc and a gyn/Onc. My Gyn/Onc did it all.
    You are so right Cancer is interesting and so confusing. I will refresh you memory. I was told over and over that I did not have Cancer...and then after insisting on Hysorectomy(sp) after botched D&C and many other tests. Path taken during the surgery (robotic) was good so no nodes were taken..and I was told I was cancer free..Yipee! A week later when I went back for post op I was told the final path came back and I had stage 3c Endo Cancer. The gyn/onc said I could wait 2 months and have nodes taken out or just treat the Cancer as if it was found in the nodes. I choose to have the agressive treatment. Had the surgery started 3 rounds of Chemo in May & June 53 treatments of radiation (27 Pelvis -26 Abdomen)and 5 internal high dose..Sept I did another 3 Cycles of Chemo and was finished In Nov. At my first 3 month check up in March the doc said he had not changed me to 3A because he was hopefull that we got rid of anything that might have been left or missed. He is not really big on giving info or answering questions. I have my second post treatment visit next week and I have been trying to write questions down for him...but I really don't know all that much myself...Like are you suppose to get a ct scan or mri or chest xray after so much time?? I asked the nurse if I was now considered a one year survivor since my surgery was last April. She said No that you are not considered a suvivor untill one year after the end of treatment. I then asked her well where am I then and she said remission...I read somewhere on here that they should do chest xray each year. Is that correct? He does do a pap and a C125 each visit. They never did a C125 before surgery and after surgery it was 4 and has stayed between 4 and 5. Is there anything I should ask the doctor. I am so scared of a recurrance and like many of the women on here my family is in another state so there is just my husband and I. I try to stay positive but some days it is so hard to do.
    I welcome any feedback from all.
    And Linda I will be praying for you. I read about your cruise and I must tell you I would not even be brave enough to do that. We will be taking a trip to Ocean City for a week (2 hour drive) we are going for the memorial day week. I am so antsy..liek afraid to be even that far from home in case I get sick. I guess I really ned help..
    Mary

    Mary:
    I too was told I did

    Mary:

    I too was told I did not have cancer but needed a hysterectomy. In fact, prior to my hysterectomy, I also had a laparorscopy and they did an internal ultrasound of my ovaries, etc. After my hysterectomy, the path report came back positive for endometrial cancer. So I had to go back in and have a staging surgery. (Grade 2, II/IIIa) At the second surgery, everything was clear and found no other cancer spots, etc. This was back in 2005. I elected to have prevented treatment which included chemo. (I had an allergic reation to taxol so I was put on gemzar and carboplatin). Then after that I had three brachy radiations. They did not do pelvic. My radiation oncologist advised against it due to my severe scarring issues.

    My CA125 never came into play (although they took it every three months since my surgery). I got a CT scan every year. During chem therapy they took a chest xray every month. Sometimes I got a CT scan twice a year. However, in 2009/2010 I have had 2 CT scans, an MRI, 3 PET/Scans. plus usual mammograms, paps, etc. Further, my initial doctor retired, and I have gone through two other doctors. I finally had to leave the state to get a doctor that I felt treated me as a person.

    By the way, I still have my port. None of my previous doctors would take it out. I hope this helps.

    Mary, enjoy your trip! You do not need to be in a bubble. In fact, it is the opposite. I have done more and experienced more and have been really having a great time. As partially) taken from Forrest Gump (when I was tired, I slept, when I was hungry I ate, when I wanted a vacation, I went) lol.

    Kathy
  • Kaleena
    Kaleena Member Posts: 2,083 Member
    Hey Linda:
    I really have to

    Hey Linda:

    I really have to give it to you. I have been following your posts since I joined and you are truly an inspiration here. What a roller coaster you have been on!

    Also, is it me or does it seem that after a major surgery or issue do you notice that the docs always seem to go on vacation. I almost feel that we give them the chance to go on vacation!

    Anyway, I hope all goes well for your Monday appointment. I go for my PET Scan Thursday. The first one since my surgery in February.

    Sending positive energy your way.

    By the way, where are you going for your cruise? We just scheduled a cruise for the end of July to the Carribbean. We will be taking the auto train to Sanford and then getting the ship at Port Canaveral. Our initial vacation was to tour Italy, however, since my oldest son is doing his fall term over there, his Visa would not allow him into the Country until September 2nd so we had to cancel that trip. Ugg! (Almost paid for it too)

    I am still adjusting to having a son in college and two sons in high school!

    Kathy
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    norma2 said:

    Interesting ain't the half of it!!!
    Linda,

    Every time I feel the slightest ache or pain I think it is cancer crouched there like a tiger waiting to spring out of the tall grass. Makes for an interesting life. I am constantly giving myself pep talks about how I should not dwell on it.

    Reading your post the thought occurred to me that you sound pretty darned healthy. Except for the nodes lighting up your body doesn't seem to have a lot wrong with it. So that is a positive sign. All the healthy parts are working fine. I am hoping for it being nothing more than an anomaly. Something to watch but, not a threat.

    Thinking of you, sweetie. And praying it is nothing more that some renegade node that will quickly succumb to treatment. {{{Linda}}}} here is hoping the best for you.

    How BAD is this, that it being BREAST cancer is BETTER??!!
    I'm baffled, but I'm smiling about it! It's almost too bizarre to be able to take seriously. I am very grateful that so far my cancer is hanging around in things I can live without (lymph nodes) and not moving into organs I absolutely need.

    My husband did research and incidences of endometrial cancer metastasizing to those particular nodes in the armpit are .03%. (He didn't show me the source, and I'll do some resaerch of my own and let you know if he's wrong here.) I told my chemo-onc that my gyne-onc always checks under my armpits and he asked if he also routinely does a breast exam. I told him he does, and he said "Well then he's a good gynecologist because we are finding that women in cancer treatment rarely ever see their primary care doctors any more, and so oncologists try do more general exams to catch other unrelated health problems that the women may be ignoring." And that made sense since I haven't seen my primary care doctor since I got cancer. How about you ladies? Anyway, that's why my chemo-onc is even entertaining the unlikely 'primary breast cancer' idea. We just have to dig out that node and have a look.

    I do feel wonderful! I'm getting ready for my cruise that departs next Thursday. I've 'fake-tanned' my legs and whitened my teeth and bought a lot of new clothes, and today I'm going to color my 1/4" crewcut so that it will look a little better if it's too hot for a wig or hat and I have to 'go commando'. 3 1/2 months out of chemo, it's still too short to fool anyone that this is a hairdo, but my scalp is at least fully covered now. We have a romantic balcony room on the ship and I've booked some shore excursion adventures for us in Bermuda, St. Thomas (where Vic and I were married), St Maarten & Puerto Rico: a boat tour into a water-filled cave; a submarine ride; a jeep waiting for us in one port with a guide to go to 2 famous Caribbean beaches; a tour of the Bacardi rum factory. I'm going to put cancer out of my mind and have a ball!

    Thank you all so much for you support and ideas. It means so much.
  • jazzy1
    jazzy1 Member Posts: 1,379
    Kaleena said:

    Hey Linda:
    I really have to

    Hey Linda:

    I really have to give it to you. I have been following your posts since I joined and you are truly an inspiration here. What a roller coaster you have been on!

    Also, is it me or does it seem that after a major surgery or issue do you notice that the docs always seem to go on vacation. I almost feel that we give them the chance to go on vacation!

    Anyway, I hope all goes well for your Monday appointment. I go for my PET Scan Thursday. The first one since my surgery in February.

    Sending positive energy your way.

    By the way, where are you going for your cruise? We just scheduled a cruise for the end of July to the Carribbean. We will be taking the auto train to Sanford and then getting the ship at Port Canaveral. Our initial vacation was to tour Italy, however, since my oldest son is doing his fall term over there, his Visa would not allow him into the Country until September 2nd so we had to cancel that trip. Ugg! (Almost paid for it too)

    I am still adjusting to having a son in college and two sons in high school!

    Kathy

    I'm with you Linda!
    I agree with Kathy that you're simply amazing and love to read your posts. You just dig in and find out what's going on and come back with loads and loads of information. You're like a walking encyclopedia. As you've mentioned before, you were like that in younger years and now it continues on into adulthood.

    I'm amazed after reading so many posts on the different possibilities and avenues the cancer can route itself. Quite scary!!! To go back to the breast is a "wow" from my perspective and then to have doc suggest it's a positive....easier to cure!

    Did anyone read the Fran Drescher book CANCER SCHMANCER? It's good insight into what can happen during a journey when docs say no it's this or that, but never figure it can be cancer. Been a year since I read it but interesting how she went to a zillion docs (11 to be exact in 2 year journey) and all kept telling her to try this drug or that test and came up with nothing. Think in the end she found a new doc who did diagnose uterine cancer. She had the hysterectomy and found cancer but contained. No treatments. Amazing how no doc found the cancer option, Can you imagine if any of our docs had us in that route and in end found cancer and it was all over our body organs....how would you feel?

    In my case, I had some bleeding on and off and just shrugged it up to peri-menopause and lots of running which challenges the monthly cycle. Had appt with OB and told me don't know what is going on but lets get you a vaginal ultrasound NOW. Showed some uterine thickening and then had D&C, showed 2 small fibroid cysts, which ended up being cancer...then to hysterectomy and rest is history. I place my doc on a pedistal as he could have pushed my minor spotting at beginning and put me on drugs or something else. He was pro-active and had me do the rampid of tests to find cancer. Now I was 3C, stage 2 which isn't the earliest but it could be worse.

    Linda you're in my thoughts and prayers and glad you're going off on the cruise. You so deserve it and need to get away from the crazies of our disease. You'll come back refreshed and ready to conquer the cancer....you go girl!!

    Best to you,
    Jan
  • Songflower
    Songflower Member Posts: 608
    jazzy1 said:

    I'm with you Linda!
    I agree with Kathy that you're simply amazing and love to read your posts. You just dig in and find out what's going on and come back with loads and loads of information. You're like a walking encyclopedia. As you've mentioned before, you were like that in younger years and now it continues on into adulthood.

    I'm amazed after reading so many posts on the different possibilities and avenues the cancer can route itself. Quite scary!!! To go back to the breast is a "wow" from my perspective and then to have doc suggest it's a positive....easier to cure!

    Did anyone read the Fran Drescher book CANCER SCHMANCER? It's good insight into what can happen during a journey when docs say no it's this or that, but never figure it can be cancer. Been a year since I read it but interesting how she went to a zillion docs (11 to be exact in 2 year journey) and all kept telling her to try this drug or that test and came up with nothing. Think in the end she found a new doc who did diagnose uterine cancer. She had the hysterectomy and found cancer but contained. No treatments. Amazing how no doc found the cancer option, Can you imagine if any of our docs had us in that route and in end found cancer and it was all over our body organs....how would you feel?

    In my case, I had some bleeding on and off and just shrugged it up to peri-menopause and lots of running which challenges the monthly cycle. Had appt with OB and told me don't know what is going on but lets get you a vaginal ultrasound NOW. Showed some uterine thickening and then had D&C, showed 2 small fibroid cysts, which ended up being cancer...then to hysterectomy and rest is history. I place my doc on a pedistal as he could have pushed my minor spotting at beginning and put me on drugs or something else. He was pro-active and had me do the rampid of tests to find cancer. Now I was 3C, stage 2 which isn't the earliest but it could be worse.

    Linda you're in my thoughts and prayers and glad you're going off on the cruise. You so deserve it and need to get away from the crazies of our disease. You'll come back refreshed and ready to conquer the cancer....you go girl!!

    Best to you,
    Jan

    Good Grief Linda!
    What a wild story! I would ask for a MRI of the breasts. You have enough data to support insurance paying for it. MRI tends to be over accurate (finding spots that are really benign) but it certainly will find cancer. Ask your doctor if you can have one.

    Hang in there kid!
  • Songflower
    Songflower Member Posts: 608
    jazzy1 said:

    I'm with you Linda!
    I agree with Kathy that you're simply amazing and love to read your posts. You just dig in and find out what's going on and come back with loads and loads of information. You're like a walking encyclopedia. As you've mentioned before, you were like that in younger years and now it continues on into adulthood.

    I'm amazed after reading so many posts on the different possibilities and avenues the cancer can route itself. Quite scary!!! To go back to the breast is a "wow" from my perspective and then to have doc suggest it's a positive....easier to cure!

    Did anyone read the Fran Drescher book CANCER SCHMANCER? It's good insight into what can happen during a journey when docs say no it's this or that, but never figure it can be cancer. Been a year since I read it but interesting how she went to a zillion docs (11 to be exact in 2 year journey) and all kept telling her to try this drug or that test and came up with nothing. Think in the end she found a new doc who did diagnose uterine cancer. She had the hysterectomy and found cancer but contained. No treatments. Amazing how no doc found the cancer option, Can you imagine if any of our docs had us in that route and in end found cancer and it was all over our body organs....how would you feel?

    In my case, I had some bleeding on and off and just shrugged it up to peri-menopause and lots of running which challenges the monthly cycle. Had appt with OB and told me don't know what is going on but lets get you a vaginal ultrasound NOW. Showed some uterine thickening and then had D&C, showed 2 small fibroid cysts, which ended up being cancer...then to hysterectomy and rest is history. I place my doc on a pedistal as he could have pushed my minor spotting at beginning and put me on drugs or something else. He was pro-active and had me do the rampid of tests to find cancer. Now I was 3C, stage 2 which isn't the earliest but it could be worse.

    Linda you're in my thoughts and prayers and glad you're going off on the cruise. You so deserve it and need to get away from the crazies of our disease. You'll come back refreshed and ready to conquer the cancer....you go girl!!

    Best to you,
    Jan

    For Livalot (Elizabeth)
    Elizabeth I relapsed about the same time you did. Finished chemo mid July 09 and had brachytherapy and some time in Feb CA 125 went up and I have early peritoneal carcinamatosis. That means it spread to the peritoneum.

    I am on doxil and avastin. With this chemo the CA 125 does not go down right away. Mine went back to normal after second one so I am having a good response. This chemo is much easier for me and most women don't lose their hair.

    I am also being considered for HIPEC which is a surgery in which they get all the cancer off the peritoneum, scrape and skin the peritoneum; instill heated chemo and then six more months of chemo. I guess it's quite a surgery but some people have been put into permenant remissions with it.

    We are learning to live with cancer. I am much calmer and at peace this time. Taking one day at a time. Although, like us all I sometimes cry. I see a therapist and she advised me it's good to cry two times a day, just for 15 minutes!

    I am happy you joined the board.
  • california_artist
    california_artist Member Posts: 816 Member
    Ro10 said:

    Elizabeth , sorry you are back again
    Your story is very much like mine. I had my total hysterectomy 1/09. I was diagnosed with Stage III-C UPSC. I finished all of my chemo and radiation 8/09. My CA 125 has been gradually increasing from my first post treatment check-up. The gyn/ono told me I had a slow recurrence and would probably have to go back on treatment within the year. That was in November he told me that. He said if it was 6 months after my last chemo, I could go back on Taxol/ Carbo. If it was less than 6 months, then he would discuss another drug, but had not decided which one it would be. He said he would like to give drugs that are used for ovarian cancer, but the insurance companies would not approve them. Even though my Ca 125 continues to rise (last one was 140) he does not treat the number, but only if the CAT scan shows something. I have 3 suspicious areas that are being watched. So I am just under observation for now, and keep hoping that the CAT scan is unchanged. I go for my next lab and CAT scan June 1st, then to the doctor June 8th for results.

    I am happy you have a great support system. That is so important. I am so fortunate to have a great husband and support from family and friends, too. When I was initially diagnosed the gyn/ono told me this could be treated like a chronic disease, and that is my mind set, that it is something that will need treatment from time to time. Keep the postive attitude, as it will take you a long way.

    Good luck with your appointment with the onocologist. I will be anxious to hear what he recommends. In peace and caring.

    Hi, Roberta
    Ah, a CAT scan doesn't show if the spots you are watching are more metabolically active then other cells in your body. It seems to me that what you need is a PET/CT combo. The PET will show areas that are active, meaning there's a likelihood that they are cancerous. The CT when used with the PET is a much lower radiation dose CT than that used for a CT stand alone scan, and used more for positioning where the PET shows any activity. in other words, if you have suspicious spots, you really need the PET/CT combo. On a personal level, you will be exposed to much, much less radiation. Radiation is a cause of cancer so the less the better. the pet uses minute amounts of radaition attached to sugar. Cancer just loves sugar, needs it to survive. So that's why you don't eat or exercise prior to the scan, they want to see where there is any activity.

    have you ever had a PET/CT. The insurance companies should pay for it if it's been a while since your last or if you've never had one. It's very important to covey that do you have a papillary serous type of uterine cancer. The pet is usually spot on for nodes or areas of 1 cm or greater. 2.5 cms equal an inch so you can see how small that is. Best of luck. It's your life.

    Be strong, hope I don't sound like I'm talking down to you, i know you're smart, i just thought you might be overwhelmed.

    Claudia

    On a personal note, shortly after my sugery, i had a pet/ct. it didn't show any activity but two nodes were a bit large, around 1 cm. my doctor wanted me to come back in a few month for a CT, this was early in my education and i agreed. in six months there was a .5 cm change in the two nodes when looked at after the CT scan. he too wanted to do the wait and see. By this time i had a little more research under my belt and asked, since they were now over the 1 cm mark if i could have a PET/CT combo. he refused to order that and said "we" would have a CT every two months to "keep an eye on things". This just didn't make sense to me since even if they were larger on the next scan, that didn't answere the were they cancerous or not question. i opted to go without an oncologist at that time. i was able to get the PET/CT ordered just through my regular doctor as she saw the reasoning behind it. That scan showed no activity. i continued my dietary and healthy living changes. i had a peT/CT scan again in April a little over a year after the second one. The nodes were still enlarged, but had not grown any. They were the nodes closest to the uterus. Anyway the point is, had i gone with my oncologists recommendation I would have had seven, that's seven CT scans. Each of those gives you the radiation equivailant of 15 years exposure (I will have to recheck that, but it's really, really high).
  • maggie_wilson
    maggie_wilson Member Posts: 596

    Hi, Roberta
    Ah, a CAT scan doesn't show if the spots you are watching are more metabolically active then other cells in your body. It seems to me that what you need is a PET/CT combo. The PET will show areas that are active, meaning there's a likelihood that they are cancerous. The CT when used with the PET is a much lower radiation dose CT than that used for a CT stand alone scan, and used more for positioning where the PET shows any activity. in other words, if you have suspicious spots, you really need the PET/CT combo. On a personal level, you will be exposed to much, much less radiation. Radiation is a cause of cancer so the less the better. the pet uses minute amounts of radaition attached to sugar. Cancer just loves sugar, needs it to survive. So that's why you don't eat or exercise prior to the scan, they want to see where there is any activity.

    have you ever had a PET/CT. The insurance companies should pay for it if it's been a while since your last or if you've never had one. It's very important to covey that do you have a papillary serous type of uterine cancer. The pet is usually spot on for nodes or areas of 1 cm or greater. 2.5 cms equal an inch so you can see how small that is. Best of luck. It's your life.

    Be strong, hope I don't sound like I'm talking down to you, i know you're smart, i just thought you might be overwhelmed.

    Claudia

    On a personal note, shortly after my sugery, i had a pet/ct. it didn't show any activity but two nodes were a bit large, around 1 cm. my doctor wanted me to come back in a few month for a CT, this was early in my education and i agreed. in six months there was a .5 cm change in the two nodes when looked at after the CT scan. he too wanted to do the wait and see. By this time i had a little more research under my belt and asked, since they were now over the 1 cm mark if i could have a PET/CT combo. he refused to order that and said "we" would have a CT every two months to "keep an eye on things". This just didn't make sense to me since even if they were larger on the next scan, that didn't answere the were they cancerous or not question. i opted to go without an oncologist at that time. i was able to get the PET/CT ordered just through my regular doctor as she saw the reasoning behind it. That scan showed no activity. i continued my dietary and healthy living changes. i had a peT/CT scan again in April a little over a year after the second one. The nodes were still enlarged, but had not grown any. They were the nodes closest to the uterus. Anyway the point is, had i gone with my oncologists recommendation I would have had seven, that's seven CT scans. Each of those gives you the radiation equivailant of 15 years exposure (I will have to recheck that, but it's really, really high).

    pet scans and insurance coverage


    fyi:
    my chemo doctor requested a ct/pet scan combo for my first scan post treatment, and my insurance company just denied the pet scan on the grounds that the pet scan" is considered investigational or experimental" and not in accord with blue shield medical policy, blah, blah blah. rationale was that the "efficacy of pet for the restaging of other cancers or monitoring response to treatment has not been validated in the peer reviewed literature."!!!!! right now i'm scheduled for a ct only on monday, and will probably go ahead with it since the grievance process would take another 30 days, and it's already taken 3 weeks to get the ct approved and scheduled. what i heard from the doctor was that if the ct scan showed anything suspicious, the pet scan then probably would be approved. this is the first time blue shield has denied any requests of any kind; up until now they've been amazing. so, guess will see what happens with the ct.

    sisterhood,
    maggie
  • Ro10
    Ro10 Member Posts: 1,561

    pet scans and insurance coverage


    fyi:
    my chemo doctor requested a ct/pet scan combo for my first scan post treatment, and my insurance company just denied the pet scan on the grounds that the pet scan" is considered investigational or experimental" and not in accord with blue shield medical policy, blah, blah blah. rationale was that the "efficacy of pet for the restaging of other cancers or monitoring response to treatment has not been validated in the peer reviewed literature."!!!!! right now i'm scheduled for a ct only on monday, and will probably go ahead with it since the grievance process would take another 30 days, and it's already taken 3 weeks to get the ct approved and scheduled. what i heard from the doctor was that if the ct scan showed anything suspicious, the pet scan then probably would be approved. this is the first time blue shield has denied any requests of any kind; up until now they've been amazing. so, guess will see what happens with the ct.

    sisterhood,
    maggie

    My onocologist also said the insurance does not approve PET
    I asked about a PET scan and my gyn/onocologist said insurance does not approve PET scans for UPSC. I too have Blue Cross. He said the CAT scan would give the information needed at this time. He said he does not agree with the insurance companies decisions. I know many have had CT/PET. I am not sure why theirs were approved. My three suspicious areas have been unchanged. If they grow bigger than 1 cm, maybe things will change for a PET.

    Maggie I hope you CAT scan goes well for you. In peace and caring.
  • daisy366
    daisy366 Member Posts: 1,458 Member

    For Livalot (Elizabeth)
    Elizabeth I relapsed about the same time you did. Finished chemo mid July 09 and had brachytherapy and some time in Feb CA 125 went up and I have early peritoneal carcinamatosis. That means it spread to the peritoneum.

    I am on doxil and avastin. With this chemo the CA 125 does not go down right away. Mine went back to normal after second one so I am having a good response. This chemo is much easier for me and most women don't lose their hair.

    I am also being considered for HIPEC which is a surgery in which they get all the cancer off the peritoneum, scrape and skin the peritoneum; instill heated chemo and then six more months of chemo. I guess it's quite a surgery but some people have been put into permenant remissions with it.

    We are learning to live with cancer. I am much calmer and at peace this time. Taking one day at a time. Although, like us all I sometimes cry. I see a therapist and she advised me it's good to cry two times a day, just for 15 minutes!

    I am happy you joined the board.

    Oh Linda!!
    Why does this cancer story need to go on so....I'm not happy you may have breast cancer. I wish it would all go away.

    But I think you have the best attitude about it all and your trip and putting it all on the shelf for now. Don't forget snorkeling!!!

    Enjoy - Mary Ann
  • maggie_wilson
    maggie_wilson Member Posts: 596
    Ro10 said:

    My onocologist also said the insurance does not approve PET
    I asked about a PET scan and my gyn/onocologist said insurance does not approve PET scans for UPSC. I too have Blue Cross. He said the CAT scan would give the information needed at this time. He said he does not agree with the insurance companies decisions. I know many have had CT/PET. I am not sure why theirs were approved. My three suspicious areas have been unchanged. If they grow bigger than 1 cm, maybe things will change for a PET.

    Maggie I hope you CAT scan goes well for you. In peace and caring.

    cat scan and interesting tidbit re: emotions

    thanx so much for your good wishes, ro. won't know results until much later in the week. my motto thus far has been "so far, so good," but i've changed that to "hoping for the best, preparing for the worst--seems more realistic, yet still hopeful.

    i was listening to kpfa (northern california's progessive pacifica station ) this morning, and learned from some one who studies the brain and emotions, that an emotion itself only lasts 1 1/2 minutes, and that it's our thinking bout it, fueling it, etc., that drags it out. i think this is pretty interesting; i can do 1/2 minutes of being anxious, scared, etc.--just breathe into it, don't fight it, and it will dissipate on its own. i'm trying this from now on. lots of deep breaths, sisters.


    sisterhood,
    maggie
  • maggie_wilson
    maggie_wilson Member Posts: 596
    Ro10 said:

    My onocologist also said the insurance does not approve PET
    I asked about a PET scan and my gyn/onocologist said insurance does not approve PET scans for UPSC. I too have Blue Cross. He said the CAT scan would give the information needed at this time. He said he does not agree with the insurance companies decisions. I know many have had CT/PET. I am not sure why theirs were approved. My three suspicious areas have been unchanged. If they grow bigger than 1 cm, maybe things will change for a PET.

    Maggie I hope you CAT scan goes well for you. In peace and caring.

    ct scan--thanx ro

    thanx ro for your good wishes. i won't know the results until the end of next week, so we'll see. my motto used to be when asked how i am has been:
    'so far, so good." i've changed that to "hoping for the best, preparing for the worst. this just seems more realistic, yet still hopeful.

    i heard something of interest this morning on kpfa, our local northern california progressive radio station, from someone who studies the brain and emotions, who said that actually an emotion itself only lasts 1 1/2 minutes!! and that it's our thoughts, and how we fuel our feelings that make them last longer. i'm going to try to just breathe into anxiety, fear, or whatever i'm feeling that feels bad, and not give it any thought. why not try it out? so, lots of deep breaths.....

    sisterhood,
    maggie