Probable recurrance and questions

RGK
RGK Member Posts: 20
edited March 2014 in Uterine/Endometrial Cancer #1
Dear friends,
As a longtime lurker on this board, I have admired you all for the support you give to each other, for your great spirit, courage, and good humor, and for your smarts and incredible knowledge. I was diagnosed with endometrial adenocarcinoma stage 3c grade 2 in May 2008 (I was 48 years old). I had carbo/taxotere and radiation, sandwich method, ending treatment in Dec. 2008.

Until last week, my PET/CT scans have been clear, and I thought, at over 2 years out of treatment, that I was easing out of the woods. But a scan last week showed a probable recurrence. Here's the language from the scan: "There are multiple new enlarged, hypermetabolic mediastinal and hilar lymph nodes." The report goes on to describe the "five most prominent," that are 10-15 mm in size, and 4.5-6.1 SUV. This is the first time that I've had any evidence of disease show up on a scan, and for some reason it was a total shock. The next step is to biopsy them (they mention a very small chance that this is something other than cancer -- sarcidosis?) -- I meet with a cardiothoracic surgeon on Monday to discuss the method, probably a bronchoscopy. Has anyone here had this procedure and tell me what I might expect?

Despite having dealt with advanced cancer and treatment, I feel like I'm entering a new land. I just don't know what to expect, what questions to ask, etc. They are testing my tumor for ER/PR and chemo sensitivity. Is there anything else I should be asking or thinking about? I know that some of you have gone to MD Anderson. Assuming the biopsy is positive, I might think about going there for a consult, or to the Mayo Clinic (where I went on my first go-round for a 2nd opinion). Any advice for getting an appointment at MD Anderson or negotiating things there. I feel like I need a doctor with a lot of tricks up their sleeve and a creative way of approaching this disease.

And mostly, I guess, I hope to find support and friendship here. Thanks so much in advance for any advice.

Reg

Comments

  • lociee
    lociee Member Posts: 102
    #2
    Hi Reg
    I'm a semi-lurker. I look at the the entries every few days - I like keeping up with everyone and seeing how they are doing. Occasionally I post. I assume you had surgery before the chemo and radiation? A biopsy seems like the right first step. First get that information - then go from there. As you have probably noticed there are a multitude of treatments available depending on what they find. A second opinion after the biopsy would be helpful to know all possible options. I feel for you - making decisions about treatment is SO DIFFICULT!
    I wish you the best,
    Mia
  • norma2
    norma2 Member Posts: 479
    #3
    http://www.mdanderson.org/
    He
    http://www.mdanderson.org/
    Here is a link to the M.D. Anderson web site. I went there for my diagnosis, surgery, treatment and follow up visits. I think they are wonderful. My doctor's name is Charles Levenbach in the Gynecological Oncology Department.

    I think all you have to do is call and set up an appointment. If you have to travel to Houston there are several inexpensive places to stay. They recommend allowing a week to have tests done. You can find out about when you talk to them. The attitude there is the patient comes first. It is an amazing place. I will be praying for you.
  • upsofloating
    upsofloating Member Posts: 466 Member
    #4
    Sorry you must deal with
    Sorry you must deal with this upset after two years. It is quite possible this is unrelated to your original cancer so a biopsy is certainly best first step. When my UPSC presented, it appeared I had appendicitis but was actually cancer surrounding the appendix. My med onc immediately assumed it was my breast cancer recurring after 9 years remission despite my expressed doubts. I think they did not bother immediately looking for more clarity with the cancer cells type until my Pap came back with abnormal endometrial cells and the new search began. I'm not familiar with either place but second opinions can be reassuring that the best options are being considered.
    Hope you are able to get clarity about what you are dealing with quickly so you can plan next steps. And yes this a good place to share your concerns, get answers, and embrace the support system we provide for each other.
    Annie
  • RGK
    RGK Member Posts: 20
    #5
    upsofloating said:

    Sorry you must deal with
    Sorry you must deal with this upset after two years. It is quite possible this is unrelated to your original cancer so a biopsy is certainly best first step. When my UPSC presented, it appeared I had appendicitis but was actually cancer surrounding the appendix. My med onc immediately assumed it was my breast cancer recurring after 9 years remission despite my expressed doubts. I think they did not bother immediately looking for more clarity with the cancer cells type until my Pap came back with abnormal endometrial cells and the new search began. I'm not familiar with either place but second opinions can be reassuring that the best options are being considered.
    Hope you are able to get clarity about what you are dealing with quickly so you can plan next steps. And yes this a good place to share your concerns, get answers, and embrace the support system we provide for each other.
    Annie

    Thank you!
    Thanks so much for your responses and good thoughts. I just went to yoga and feel calmer. One of the disconcerting things about all this is that (unlike the first go-around) I feel great. I really appreciate your suggestions. It helped the first time to get a second opinion (actually I got three), and so I'll do the same this time.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #6
    RGK said:

    Thank you!
    Thanks so much for your responses and good thoughts. I just went to yoga and feel calmer. One of the disconcerting things about all this is that (unlike the first go-around) I feel great. I really appreciate your suggestions. It helped the first time to get a second opinion (actually I got three), and so I'll do the same this time.

    (((Reg))) TINY cancer, if it even is cancer. Still scary I know
    If this does turn out to be a recurrence, you are going back into battle with the advantage of a prolonged remission. That will allow you to go back to the 'gold standard' (carbo/taxol) and very likely knock yourself right back into another remission. I cannot over-emphasize how HUGE that advantage is, when you can return to the same chemo that put you into remission the 1st time, instead of settling for a 'second line' (i.e., second best) chemo drug. And your cancer is TINY still, no large tumors to deal with. You have a good shot of the chemo bringing you quickly back to NED.

    Of course, I hope it's not a recurrence. I have to look up those nodes to see where they are in the body; do you know? I remember well how devastated I was when I lost my initial remission back in November 2009 (& my 1st remission was only 5 1/2 months!) But after 10 weeks of chemo, I was NED again on my next CT/PET. But I had to take a weaker less effective chemo option than carbo/taxol because I hadn't had a long enough platinum-free interval, and my cancer returned again 4 months later. You are in a much better position, and I believe you'll be able to get back into a prolonged remission pretty quickly. & LONG remissions are the path to LONG survival, so you're still on the right path for a good prognosis.

    And you are symptom-free! I always say, if you don't FEEL sick, isn't that almost as good as being healthy?? (((Reg)))
  • kkstef
    kkstef Member Posts: 688 Member
    #7
    Thinking of you!
    Reg...First off, I am so sorry to hear about your new developments. I am not saying a "recurrence" as until you have the biopsies, you will not know. I am glad you are getting the assays done...that is important!

    I love your picture....is that you and WHERE are you? It looks awesome!

    I am so glad you checked in on this site....we are here to help in any way we can and to offer our support! You can do this!!

    HUGE HUGS!! Karen
  • kkstef
    kkstef Member Posts: 688 Member
    #8
    Thinking of you!
    Double post....deleted.
  • RGK
    RGK Member Posts: 20
    #9
    kkstef said:

    Thinking of you!
    Double post....deleted.

    Grateful
    I'm so very grateful to all of you for your posts and reassurances. To Linda: as I understand it, these lymph nodes are in my chest and the base of my neck, around my thorax. I'm interested in your thoughts about carbo/taxol as being the "gold standard." My intuitive sense (based on nothing scientific, obviously), is that if it didn't work the first time around it'd be better to try something else. Looking through clinical trials for recurrent endometrial cancer, I'm amazed by how many different chemo regimes they're studying, and I can't imagine how to figure out what would be better than another.

    I go to the cardiothoracic docs tomorrow, and hope to have a better sense of how they'll proceed, and how quickly. Very, I hope! I'm finding this wait-and-see situation a real challenge.

    About the picture: Yes, I am the person in front, diving into a lake in Wisconsin last summer with a friend. It was a lovely place. I'm a native Californian, now living in Minnesota, and I love being on and near any body of water.

    I've looked to you all as role models, as I've read your posts. Thanks so much for your welcoming support.
  • kumar
    kumar Member Posts: 107
    #10
    RGK said:

    Grateful
    I'm so very grateful to all of you for your posts and reassurances. To Linda: as I understand it, these lymph nodes are in my chest and the base of my neck, around my thorax. I'm interested in your thoughts about carbo/taxol as being the "gold standard." My intuitive sense (based on nothing scientific, obviously), is that if it didn't work the first time around it'd be better to try something else. Looking through clinical trials for recurrent endometrial cancer, I'm amazed by how many different chemo regimes they're studying, and I can't imagine how to figure out what would be better than another.

    I go to the cardiothoracic docs tomorrow, and hope to have a better sense of how they'll proceed, and how quickly. Very, I hope! I'm finding this wait-and-see situation a real challenge.

    About the picture: Yes, I am the person in front, diving into a lake in Wisconsin last summer with a friend. It was a lovely place. I'm a native Californian, now living in Minnesota, and I love being on and near any body of water.

    I've looked to you all as role models, as I've read your posts. Thanks so much for your welcoming support.

    God Bless You
    Hi ,

    It can be something else.Please do your ca125 test.Have they done it. Please eat green vegetables and fruits all time.

    Can i ask your first patholgy report. How far it was spread. It was into lymph nodes. Whar treatment plan you had.

    Thanks Kumar
  • RGK
    RGK Member Posts: 20
    #11
    kumar said:

    God Bless You
    Hi ,

    It can be something else.Please do your ca125 test.Have they done it. Please eat green vegetables and fruits all time.

    Can i ask your first patholgy report. How far it was spread. It was into lymph nodes. Whar treatment plan you had.

    Thanks Kumar

    Hi Kumar,
    Thanks very much
    Hi Kumar,

    Thanks very much for your response. CA 125 is probably not a good indicator for me, unfortunately. The highest it has been is 17 (didn't have it tested before surgery), and it has fluctuated between 8-12 during and after treatment. The most recent test, that they did before my PET/CT scan, was 12. My first pathology report was 60% invasion of the uterine wall, and 2 positive lymph nodes. No other evidence of disease, and clean scans until last week.

    And thank you all for your replies. As this new information settles in, my partner and I are really struggling with sadness and anger at this disease.

    Reg
  • kkstef
    kkstef Member Posts: 688 Member
    #12
    RGK said:

    Grateful
    I'm so very grateful to all of you for your posts and reassurances. To Linda: as I understand it, these lymph nodes are in my chest and the base of my neck, around my thorax. I'm interested in your thoughts about carbo/taxol as being the "gold standard." My intuitive sense (based on nothing scientific, obviously), is that if it didn't work the first time around it'd be better to try something else. Looking through clinical trials for recurrent endometrial cancer, I'm amazed by how many different chemo regimes they're studying, and I can't imagine how to figure out what would be better than another.

    I go to the cardiothoracic docs tomorrow, and hope to have a better sense of how they'll proceed, and how quickly. Very, I hope! I'm finding this wait-and-see situation a real challenge.

    About the picture: Yes, I am the person in front, diving into a lake in Wisconsin last summer with a friend. It was a lovely place. I'm a native Californian, now living in Minnesota, and I love being on and near any body of water.

    I've looked to you all as role models, as I've read your posts. Thanks so much for your welcoming support.

    Thinking of you
    Will be sending lots of positive energy to you tomorrow as you visit the cardiothoracic docs ...I can understand the impatience involved with having to wait on the getting a plan together and getting it implemented.

    I know that whatever the outcome you will take it on full force and with the support of your partner, you WILL win!!

    BIG HUGS!!

    Karen
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #13
    kkstef said:

    Thinking of you
    Will be sending lots of positive energy to you tomorrow as you visit the cardiothoracic docs ...I can understand the impatience involved with having to wait on the getting a plan together and getting it implemented.

    I know that whatever the outcome you will take it on full force and with the support of your partner, you WILL win!!

    BIG HUGS!!

    Karen

    I guess, from my perspective, carbo/taxol DID work for you.
    You had a 2-year remission from the carbo/taxol, and from my perscpective, that seems like a HUGE victory worth trying to repeat. The reason carbo/taxol is almost always the first line chemo choice is because it has the highest percentage of effectiveness of the various chemos you can try, offset by the most acceptable side affects. Once you start down the line of alternate chemos, each one has a smaller percentage statistically of success, again offset by the quality-of-life issue of side affects. That doesn't mean that other chemos can't be successful for you, just that there is a greater percentage of women that these others chemos will NOT work for. I was told at Fox Chase that Doxil was effective for 30+% of the people who get it. Unfortunately I was not within that 30+%, but I know people who WERE and made it back into remission on Doxil. The same is true of Gemzar, Cytoxin, etc. But of all the chemo cocktails out there, carbo/taxol helps the greatest percentage of women get their cancer back under control. That's why, if I'd had a nice long remission like you had, I'd go back to carbo/taxol right away and try and get ANOTHER 2-year remission out of it.

    As an aside, although I couldn't go back to carbo/taxol because I didn't have a long enough 'platinum-free-interval' with my short remission, I did go back on just taxol alone and that was enough to get me back into another short remission. I tried Doxil after that but it didn't work on me and now I am on carboplatin alone and that's the 1st thing that has been able to drop my CA125 for the past 6 months. So please consider carbo/taxol. That's the 'good stuff', in my experience.
  • patsplace
    patsplace Member Posts: 14
    #14
    Hi, Reg
    I have a similar diagnosis, and it seems that during radiation treatments, anyway, tumors show up--hysterectomy in March, tumor showed up in April. Lumpectomy in October, tumor shows up in another place in January. Looking at starting chemo within the next few weeks, and like yours, my research has shown that the protocols for treating advanced endo adeno vary widely. Also like you, I'm requesting 2 & 3 opinions on all labs and diagnoses. So far I've been lucky and no tumors are visible on internal organs (last ct was December), but the most recent one is in the groin, probably a lymph node. Will start carbo-taxol within next few weeks, as soon as current radiation is finished...The oncs here told me that advanced endo adeno was rare enough (because most cases are diagnosed very early) that there just isn't the research to establish a protocol, but carbo + taxol is the first line treatment. For me, the most emotionally difficult thing (and probably adds to the difficulty in treating it) about this cancer is that it is so unpredictable in addition to being fast-growing. Most cases of this cancer are estrogen receptive, but some, like mine, aren't.
    I'd thought about going to MD Anderson (and may yet) but our hospital is associated with UW Hutchinson center in Seattle so will start there with a consult before starting chemo as my insurance will cover it as in-network. I would think any major cancer center--where they are likely to see multiple cases of advanced endo--would be reasonable for a second opinion. Meanwhile breath deep and keep doing the yoga! Hope the biopsy turns out better than the docs can imagine!
    Pat
  • kumar
    kumar Member Posts: 107
    #15
    My Heart goes to you
    Hi,

    I am praying for you. please ask second opinion. What symptons you had before this CT Scan?

    When you had CT scan last time. When you done ur ca125? I know u mentioned 12 but exactally when.

    Because this type cancer never comes back specially endo andenco.

    There is lady Karen she had same cancer in 2008.

    Hope she will help u.

    she is my sweat darling.

    Please keep us posted and let us know what is next step in ur treatmwnt.

    I am too young to say u but i want to say god bless u.

    Thanks Kumar
  • kkstef
    kkstef Member Posts: 688 Member
    #16
    kumar said:

    My Heart goes to you
    Hi,

    I am praying for you. please ask second opinion. What symptons you had before this CT Scan?

    When you had CT scan last time. When you done ur ca125? I know u mentioned 12 but exactally when.

    Because this type cancer never comes back specially endo andenco.

    There is lady Karen she had same cancer in 2008.

    Hope she will help u.

    she is my sweat darling.

    Please keep us posted and let us know what is next step in ur treatmwnt.

    I am too young to say u but i want to say god bless u.

    Thanks Kumar

    I am so sorry to hear about your recurrences. I found your diagnosis and timing incredibly similar to mine. As so many on this site have said, this whole journey is truly a crap shoot. I was diagnosed in June 2008 with Adenocarcinoma Grade 2/3, Stage 3A. After robotic surgery, I started radiation in July 2008 (30 rounds, no brachy), then had 5 rounds of carbo/taxol ending Dec 30, 2008. (I was scheduled for 7 rounds but I just couldn't get my labs up and the neuropathy was getting much worse).

    I consider myself incredibly fortunate since I have had no recurrence. I do not have routine CT or lab work done. I have an annual chest x-ray. Last week I was having some bowel issues and my gyn oncologist felt it needed to be pursued more and ordered a CT scan. That made me nervous as he is very reluctant to order CT scans unless for a good reason due to the large amount of radiation. I can now appreciate the anxiety so many of you go through on a regular basis as you await your test results. I was SO relieved and thankful that everything looked "fine".

    Reg, I am interested in how your visit with the cardiothoracic doc and that their “plan is”.
    Pat, I can understand the dilemma you are facing and would highly recommend another opinion. I agree that any major medical center should have the experience to provide a second opinion and as we always recommend, make sure it is a gyn oncologist. I do think that they are more in tune with the latest studies and developments specifically related to our issues.

    My heart goes out to both of you! I wish I could provide more specific suggestions, but I have not been in your shoes and that makes a big difference. Please know that I will be thinking about both of you and wishing you the very best. Whatever decision you make, it will be the best one for YOU! You are both good advocates for yourself and I know you CAN do it!

    Positive energy coming your way!

    (Kumar, thank you for thinking of me. You are very special!)

    Karen
  • RGK
    RGK Member Posts: 20
    #17
    kkstef said:

    I am so sorry to hear about your recurrences. I found your diagnosis and timing incredibly similar to mine. As so many on this site have said, this whole journey is truly a crap shoot. I was diagnosed in June 2008 with Adenocarcinoma Grade 2/3, Stage 3A. After robotic surgery, I started radiation in July 2008 (30 rounds, no brachy), then had 5 rounds of carbo/taxol ending Dec 30, 2008. (I was scheduled for 7 rounds but I just couldn't get my labs up and the neuropathy was getting much worse).

    I consider myself incredibly fortunate since I have had no recurrence. I do not have routine CT or lab work done. I have an annual chest x-ray. Last week I was having some bowel issues and my gyn oncologist felt it needed to be pursued more and ordered a CT scan. That made me nervous as he is very reluctant to order CT scans unless for a good reason due to the large amount of radiation. I can now appreciate the anxiety so many of you go through on a regular basis as you await your test results. I was SO relieved and thankful that everything looked "fine".

    Reg, I am interested in how your visit with the cardiothoracic doc and that their “plan is”.
    Pat, I can understand the dilemma you are facing and would highly recommend another opinion. I agree that any major medical center should have the experience to provide a second opinion and as we always recommend, make sure it is a gyn oncologist. I do think that they are more in tune with the latest studies and developments specifically related to our issues.

    My heart goes out to both of you! I wish I could provide more specific suggestions, but I have not been in your shoes and that makes a big difference. Please know that I will be thinking about both of you and wishing you the very best. Whatever decision you make, it will be the best one for YOU! You are both good advocates for yourself and I know you CAN do it!

    Positive energy coming your way!

    (Kumar, thank you for thinking of me. You are very special!)

    Karen

    Thank you
    Thanks Pat, for your positive energy. I'm so pleased to hear that your CT scan was good!

    I met with the cardiothoracic surgeon on Monday, and he's recommending a procedure called a mediastinoscopy. It has some risks (lymph nodes are very close to major arteries), but provides the most information about what they find. As an alternative, he offered a lower-risk broncoscopy, but that provides less information (for instance, ER/PR testing wouldn't be possible). For that reason, I'm leaning strongly toward the former. The surgeon said that he thought it was unusual for endometrial cancer to recur in this way, in these places. Has anyone heard of or experienced recurrence in the mediastinal and hilar lymph nodes? My lungs are clear, and no sign of anything on the paraaortic nodes. This is the first time that I've had any sign of cancer in any PET/CT scan, including the one they did after surgery and before chemo/rad.

    It has been a very difficult week, but I'm finding some calm in yoga and also in work. Thinking of you all, very grateful for your support, and sending it back your way!
    Reg
  • RGK
    RGK Member Posts: 20
    #18
    RGK said:

    Thank you
    Thanks Pat, for your positive energy. I'm so pleased to hear that your CT scan was good!

    I met with the cardiothoracic surgeon on Monday, and he's recommending a procedure called a mediastinoscopy. It has some risks (lymph nodes are very close to major arteries), but provides the most information about what they find. As an alternative, he offered a lower-risk broncoscopy, but that provides less information (for instance, ER/PR testing wouldn't be possible). For that reason, I'm leaning strongly toward the former. The surgeon said that he thought it was unusual for endometrial cancer to recur in this way, in these places. Has anyone heard of or experienced recurrence in the mediastinal and hilar lymph nodes? My lungs are clear, and no sign of anything on the paraaortic nodes. This is the first time that I've had any sign of cancer in any PET/CT scan, including the one they did after surgery and before chemo/rad.

    It has been a very difficult week, but I'm finding some calm in yoga and also in work. Thinking of you all, very grateful for your support, and sending it back your way!
    Reg

    I meant thanks to Karen,
    I meant thanks to Karen, with congratulations about your scan. And thanks to Pat for sharing info about similar dxs.
    Still finding my way around posting here!
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #19
    RGK said:

    Thank you
    Thanks Pat, for your positive energy. I'm so pleased to hear that your CT scan was good!

    I met with the cardiothoracic surgeon on Monday, and he's recommending a procedure called a mediastinoscopy. It has some risks (lymph nodes are very close to major arteries), but provides the most information about what they find. As an alternative, he offered a lower-risk broncoscopy, but that provides less information (for instance, ER/PR testing wouldn't be possible). For that reason, I'm leaning strongly toward the former. The surgeon said that he thought it was unusual for endometrial cancer to recur in this way, in these places. Has anyone heard of or experienced recurrence in the mediastinal and hilar lymph nodes? My lungs are clear, and no sign of anything on the paraaortic nodes. This is the first time that I've had any sign of cancer in any PET/CT scan, including the one they did after surgery and before chemo/rad.

    It has been a very difficult week, but I'm finding some calm in yoga and also in work. Thinking of you all, very grateful for your support, and sending it back your way!
    Reg

    Two of the four lymph nodes that have slowly been increasing in size are mediastinal nodes. Over the last year they have slowly been increasing, along with a rising CA 125. Both my gyn onocologist in Florida and regular onocologist have suggested to continue to observe them for the time being. I started on Arimidex about 5 weeks ago. I am trying that for two months to see if it slows down the increase of the CA 125. If this medicine does not work, it will probably mean I will need to go back on Chemo. The gyn/ono said there was only a 10-20% chance it would help. But it gave me two more months of being treatment free. I had my last chemo Aug 09, so I have had a break in treatment. My husband and I have made the most of this time and have done a lot of traveling and visiting relatives that live away from us.

    Good luck in making your decision on which test to go forward with. In peace and caring.
  • HellieC
    HellieC Member Posts: 524 Member
    #20
    Ro10 said:

    Two of the four lymph nodes that have slowly been increasing in size are mediastinal nodes. Over the last year they have slowly been increasing, along with a rising CA 125. Both my gyn onocologist in Florida and regular onocologist have suggested to continue to observe them for the time being. I started on Arimidex about 5 weeks ago. I am trying that for two months to see if it slows down the increase of the CA 125. If this medicine does not work, it will probably mean I will need to go back on Chemo. The gyn/ono said there was only a 10-20% chance it would help. But it gave me two more months of being treatment free. I had my last chemo Aug 09, so I have had a break in treatment. My husband and I have made the most of this time and have done a lot of traveling and visiting relatives that live away from us.

    Good luck in making your decision on which test to go forward with. In peace and caring.

    Thinking of you ladies
    I just wanted to add my good wishes to you ladies currently undergoing investigations for recurrence.
    I finished 6 cycles of carbo/taxol for a second recurrence last week. (first recurrence at vaginal vault treated with external radiotherapy in 2007/8, then recurred in same place and wrapped around colon in July this year - just as we thought we might have beaten the little sucker!). I have a CT scan planned for 19th Feb followed by an appt with my onco on 9th March to see where we're at, but I am trying to remain positive that this round of surgery and chemo will have knocked it all back to NED.
    As is said, the best protocol for advanced or recurrent endo ca isn't 100% established, because it isn't so common and therefore the patient population isn't there to study. But the carbo/taxol route does seem to be the path most often taken and from what I've read, we have around a 30-35% chance of getting a complete response (those wonderful words NED) and a much higher chance of getting at least a partial response, so in my view it's definitely worth a shot. My experience of the chemo regimen is that it's tough but do-able and I would do it again if I needed to.
    Thinking of you
    Helen

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