Anyone with Signet Ring Adenocarcinoma???

Maxiecat
Maxiecat Member Posts: 544 Member
in Rare and Other Cancers #1
I posted this on the colon cancer forum...and so far have not found anyone with my specific form of cancer....so I am reposting it here...

I had my appointment with my oncologist to where he told me that my cancer is a "variant" (his words) of colon cancer. I have looked it up and found statistics showing that it is very rare...less than 1% of colon cancers. The prognosis isn't good...but then the only informlmation i have found is old. I am thinking that i need to find a specialist...even though i really like my doctor. I am concrrned that the chemo is not going to be very effective as this type of cancer is not only very aggressive but resistant to chemo.

Is any one else diagnosed with signet ring cell cancer? Does anyone have any info....info on specialists in signet ring cancer? I am in Northern Virginia...so Washington or even Baltimore woul be ideal. I also have family in Tampa...so Moffit could also be an option.

Alex

I have searched and searched...I have found no information on where to go for treatment - I want a second opinion from a specialist/expert...and I can't even find one single doctor out there.

Comments

  • Ruffy7
    Ruffy7 Member Posts: 126
    #2
    Have you tried Md Anderson?
    Have you tried Md Anderson? They are one of the top cancer centers in the world. My cancer (appendix) is also rare - really no one local. You may need to go wherever you find an expert in your cancer. Good luck :)
  • Maxiecat
    Maxiecat Member Posts: 544 Member
    #3
    Ruffy7 said:

    Have you tried Md Anderson?
    Have you tried Md Anderson? They are one of the top cancer centers in the world. My cancer (appendix) is also rare - really no one local. You may need to go wherever you find an expert in your cancer. Good luck :)

    Thank you...i am going to
    Thank you...i am going to check them out. Do you go to MD Anderson? I am from Virginia...but if I have to travel for the right treatment...then i will.

    Alex
  • Ruffy7
    Ruffy7 Member Posts: 126
    #4
    Maxiecat said:

    Thank you...i am going to
    Thank you...i am going to check them out. Do you go to MD Anderson? I am from Virginia...but if I have to travel for the right treatment...then i will.

    Alex

    Fortunately my tumor was
    Fortunately my tumor was caught before it ruptured so I'm in the watch and wait phase but we did consult with them and with docs at university of maryland. Yours isn't appendix cancer, is it?
  • Maxiecat
    Maxiecat Member Posts: 544 Member
    #5
    Ruffy7 said:

    Fortunately my tumor was
    Fortunately my tumor was caught before it ruptured so I'm in the watch and wait phase but we did consult with them and with docs at university of maryland. Yours isn't appendix cancer, is it?

    Well....I haven't really
    Well....I haven't really been able to get a straight answer from my oncologist. The appendix and the cecum all the way up to the top of the colon were removed in my colon resection. When I had the colonoscopy done before the surgery and on the CT scan it looked like the cancer was growing out of my appendix into my colon. In my appointment this week my oncologist went into a little more detail ... telling me that this is a "variant" of colon cancer - so that is why the course of treatment is the same as other colon cancers. I am so confused. I really think I need a second opinion ... from a specialist in this area...that is why I am looking for more information. This docor is just going with the party line that they are very sure that since it did not penetrate through the colon .... they removed it. It did make it to 4 of the 18 lymph nodes that they biopsied. They staged me at a a IIIb ... but from what I read - 4 or more nodes is a IIIc??? He stated that this chemo is just sort of a "mop-up". I'm not so sure i am comfortable with this and I want to be sure that we are doing everything we can to fight this.
  • Ruffy7
    Ruffy7 Member Posts: 126
    #6
    Maxiecat said:

    Well....I haven't really
    Well....I haven't really been able to get a straight answer from my oncologist. The appendix and the cecum all the way up to the top of the colon were removed in my colon resection. When I had the colonoscopy done before the surgery and on the CT scan it looked like the cancer was growing out of my appendix into my colon. In my appointment this week my oncologist went into a little more detail ... telling me that this is a "variant" of colon cancer - so that is why the course of treatment is the same as other colon cancers. I am so confused. I really think I need a second opinion ... from a specialist in this area...that is why I am looking for more information. This docor is just going with the party line that they are very sure that since it did not penetrate through the colon .... they removed it. It did make it to 4 of the 18 lymph nodes that they biopsied. They staged me at a a IIIb ... but from what I read - 4 or more nodes is a IIIc??? He stated that this chemo is just sort of a "mop-up". I'm not so sure i am comfortable with this and I want to be sure that we are doing everything we can to fight this.

    Hmmm, maybe you should get a
    Hmmm, maybe you should get a second opinion with appendix cancer specialist. Mansfield is at md anderson, h. Alexander is at university of maryland, paty is at memorial sloan kettering - you can go to the appendix cancer website for other drs. If it is appendix cancer it is treated different than colon cancer. My tumor also was growing out of the appendix and my cecum was removed during surgery. Colon cancer drs often don't know what to do with appendix cancers. You can pm me if you want. Also abrub is a good one to talk to as well. Good luck
  • abrub
    abrub Member Posts: 2,174 Member
    #7
    Maxiecat said:

    Well....I haven't really
    Well....I haven't really been able to get a straight answer from my oncologist. The appendix and the cecum all the way up to the top of the colon were removed in my colon resection. When I had the colonoscopy done before the surgery and on the CT scan it looked like the cancer was growing out of my appendix into my colon. In my appointment this week my oncologist went into a little more detail ... telling me that this is a "variant" of colon cancer - so that is why the course of treatment is the same as other colon cancers. I am so confused. I really think I need a second opinion ... from a specialist in this area...that is why I am looking for more information. This docor is just going with the party line that they are very sure that since it did not penetrate through the colon .... they removed it. It did make it to 4 of the 18 lymph nodes that they biopsied. They staged me at a a IIIb ... but from what I read - 4 or more nodes is a IIIc??? He stated that this chemo is just sort of a "mop-up". I'm not so sure i am comfortable with this and I want to be sure that we are doing everything we can to fight this.

    I also vote for an opinion with appendix cancer specialist
    I do know one of Dr. Paty's patients - signet cell - who is 12 years out from her diagnosis, and yes, hers originated in the appendix.

    While appendix cancer is a variant of colon cancer, it is not treated the same way. This is why you must see an expert.

    As a side note, I, too, go to Dr. Paty at Memorial Sloan Kettering for a mucinous adenocarcinoma (Stage 4) of the appendix. At 5 years out, I'm doing great.

    Alice
  • Maxiecat
    Maxiecat Member Posts: 544 Member
    #8
    abrub said:

    I also vote for an opinion with appendix cancer specialist
    I do know one of Dr. Paty's patients - signet cell - who is 12 years out from her diagnosis, and yes, hers originated in the appendix.

    While appendix cancer is a variant of colon cancer, it is not treated the same way. This is why you must see an expert.

    As a side note, I, too, go to Dr. Paty at Memorial Sloan Kettering for a mucinous adenocarcinoma (Stage 4) of the appendix. At 5 years out, I'm doing great.

    Alice

    Thank you...12 years...makes
    Thank you...12 years...makes me feel so much better.... i am going to go over to the appendix cancer board that you posted before. I will check into SK and U MD ...Baltimore is only about 1 1/2 hours away for me....New York about 5 hrs....distance is a concern...i have children still in elementary school...i dont want to be awayvfrom them for long priods of time if i can help it.


    5 years is great...keep up the good work.
    Alex
  • Maxiecat
    Maxiecat Member Posts: 544 Member
    #9
    Ruffy7 said:

    Hmmm, maybe you should get a
    Hmmm, maybe you should get a second opinion with appendix cancer specialist. Mansfield is at md anderson, h. Alexander is at university of maryland, paty is at memorial sloan kettering - you can go to the appendix cancer website for other drs. If it is appendix cancer it is treated different than colon cancer. My tumor also was growing out of the appendix and my cecum was removed during surgery. Colon cancer drs often don't know what to do with appendix cancers. You can pm me if you want. Also abrub is a good one to talk to as well. Good luck

    I have been looking for a
    I have been looking for a specialist that i can get to...h. Alexander at the U of MD would be the closest..l But Sloan Kettering would be doable at about 5 hours away. I now realize that my current oncologist isnt specialized enough to treat my specific kind of cancer. I have calls into several places like Dr Sugarbaker at Washington Cancer Institute and Moffit down in Tampa. Im going to take charge of this and find a specialist to give me what i need.

    Thank you for the leads on specialists...this reasearch has been confusing and upsetting.

    Alex
  • Ruffy7
    Ruffy7 Member Posts: 126
    #10
    Maxiecat said:

    Thank you...12 years...makes
    Thank you...12 years...makes me feel so much better.... i am going to go over to the appendix cancer board that you posted before. I will check into SK and U MD ...Baltimore is only about 1 1/2 hours away for me....New York about 5 hrs....distance is a concern...i have children still in elementary school...i dont want to be awayvfrom them for long priods of time if i can help it.


    5 years is great...keep up the good work.
    Alex

    Just a note; Dr Alexander
    Just a note; Dr Alexander called me personally even though I had never seen him or been an official patient of his. He also gave me the name of his local onc in Ohio to provide follow up care. Ive found his office to be very caring and on top of things. I'm sure the other specialists are just as good. You need to take charge that's what ive found. A year ago I trusted drs with no guestions. Now I guestion everything and do my own research. As rare as appendix cancer is there are still many variations of it and it is important to find the right dr to treat it. I'm in the watch and wait mode now but will go to Dr Alexander if it shows up again.
  • SouthernYankee
    SouthernYankee Member Posts: 1
    #11
    Consider HIPEC
    My father had appendiceal/colon/peritoneal cancer and was treated with chemotherapy and HIPEC surgery. Based on our experience I would recommend you connect with one of the following folks:

    * Dr. Sugarbaker - Washington DC http://www.whcenter.org/body.cfm?id=557536

    * Dr Levine - Wake Forest Baptist Medical Center http://www.whcenter.org/body.cfm?id=557536

    Also check out the following online resources for more information, and to connect with other patients and families:

    http://www.inspire.com/groups/pseudomyxoma-peritonei-pmp/discussions

    http://www.pmppals.org/index.html

    Note that HIPEC may or may not be appropriate given your situation. If you do choose to pursue the procedure, be aware that it is a serious, hard-core surgery. Quite possibly the most extensive and most invasive surgical procedure performed under any circumstances. And whatever you do, watch your cardiovascular health while you are treating the cancer. Sadly, my father died of a heart attack less than three months after having HIPEC surgery at Wake Forest. Chemo and surgery will weaken every system in your body, and you have to especially vigilant to watch for medical issues that are seemingly unrelated to the cancer.
  • Maxiecat
    Maxiecat Member Posts: 544 Member
    #12
    SouthernYankee said:

    Consider HIPEC
    My father had appendiceal/colon/peritoneal cancer and was treated with chemotherapy and HIPEC surgery. Based on our experience I would recommend you connect with one of the following folks:

    * Dr. Sugarbaker - Washington DC http://www.whcenter.org/body.cfm?id=557536

    * Dr Levine - Wake Forest Baptist Medical Center http://www.whcenter.org/body.cfm?id=557536

    Also check out the following online resources for more information, and to connect with other patients and families:

    http://www.inspire.com/groups/pseudomyxoma-peritonei-pmp/discussions

    http://www.pmppals.org/index.html

    Note that HIPEC may or may not be appropriate given your situation. If you do choose to pursue the procedure, be aware that it is a serious, hard-core surgery. Quite possibly the most extensive and most invasive surgical procedure performed under any circumstances. And whatever you do, watch your cardiovascular health while you are treating the cancer. Sadly, my father died of a heart attack less than three months after having HIPEC surgery at Wake Forest. Chemo and surgery will weaken every system in your body, and you have to especially vigilant to watch for medical issues that are seemingly unrelated to the cancer.

    Thank you. I have been
    Thank you. I have been reading up on the HIPEC procedure...i hope it does not come down to that...but if it will bring me a good outcome I'll do anything. I have a call into Dr Sugarbaker...he is the closest "expert" to me...that would be ideal so that i could remain close to my young family. There is an issue with my insurance...the current onc is calling it colon cancer...but the pathology report clearly states SRA. So maybe his office can help me get it straightened out so that i can see him. Thank you for the other links...i have been doing more research than i ever did in college!

    I will be sure to make sure that my heart and other systems are monitored...my primary care thought he once detected a minor mitral valve prolapse issue...it never got worse (haven't had any issues with it in years) ... so no further studies were done on it.

    I am so sorry about your dear father...it must be so hard to lose him to a heart attack after the fight he put up against cancer. Thank you for being here for others who are going through what he went through. I do have a question for the specialist ...when i get there...is this something that is hereditary. I did read some info on gene mutations. I have 2 young children...ages 10 & 11 .... i don't want this to be their future. I also have a brother ...who is going to get his colonoscopy next month....i am 45 and he is 42.

    Alex
  • Ruffy7
    Ruffy7 Member Posts: 126
    #13
    Maxiecat said:

    Thank you. I have been
    Thank you. I have been reading up on the HIPEC procedure...i hope it does not come down to that...but if it will bring me a good outcome I'll do anything. I have a call into Dr Sugarbaker...he is the closest "expert" to me...that would be ideal so that i could remain close to my young family. There is an issue with my insurance...the current onc is calling it colon cancer...but the pathology report clearly states SRA. So maybe his office can help me get it straightened out so that i can see him. Thank you for the other links...i have been doing more research than i ever did in college!

    I will be sure to make sure that my heart and other systems are monitored...my primary care thought he once detected a minor mitral valve prolapse issue...it never got worse (haven't had any issues with it in years) ... so no further studies were done on it.

    I am so sorry about your dear father...it must be so hard to lose him to a heart attack after the fight he put up against cancer. Thank you for being here for others who are going through what he went through. I do have a question for the specialist ...when i get there...is this something that is hereditary. I did read some info on gene mutations. I have 2 young children...ages 10 & 11 .... i don't want this to be their future. I also have a brother ...who is going to get his colonoscopy next month....i am 45 and he is 42.

    Alex

    I read somewhere during my
    I read somewhere during my research that it (appendix) cancer probably is not genetic because of it's rarity. If it was genetic, then there would be more cases of it. Just putting it out there... I found it reassuring.

    So do you need your current doc to refer you to specialist? I've gotten several "second" opinions and did not need to have a referral by a doc for it as long as they were in network (I could even have gone out of network, just would have cost me to do it). I checked with my insurance company and they confirmed that md anderson and univ. of maryland were in network before I consulted with them.

    There are quite a few doc/hospitals that do HIPEC, you need to be sure that they have done alot of them. Sugarbaker is the father of HIPEC though there are others who also do alot of these surgeries.
  • abrub
    abrub Member Posts: 2,174 Member
    #14
    Maxiecat said:

    Thank you. I have been
    Thank you. I have been reading up on the HIPEC procedure...i hope it does not come down to that...but if it will bring me a good outcome I'll do anything. I have a call into Dr Sugarbaker...he is the closest "expert" to me...that would be ideal so that i could remain close to my young family. There is an issue with my insurance...the current onc is calling it colon cancer...but the pathology report clearly states SRA. So maybe his office can help me get it straightened out so that i can see him. Thank you for the other links...i have been doing more research than i ever did in college!

    I will be sure to make sure that my heart and other systems are monitored...my primary care thought he once detected a minor mitral valve prolapse issue...it never got worse (haven't had any issues with it in years) ... so no further studies were done on it.

    I am so sorry about your dear father...it must be so hard to lose him to a heart attack after the fight he put up against cancer. Thank you for being here for others who are going through what he went through. I do have a question for the specialist ...when i get there...is this something that is hereditary. I did read some info on gene mutations. I have 2 young children...ages 10 & 11 .... i don't want this to be their future. I also have a brother ...who is going to get his colonoscopy next month....i am 45 and he is 42.

    Alex

    Alex - Sloan Kettering
    Alex - Sloan Kettering (while farther from you) does not do HIPEC. They do Intraperitoneal Chemo post-op, which is less traumatic. A belly port is placed, and you have 4-8 cycles of chemo every other week, where they run it directly into your peritoneal cavity. It's not fun, but for most people (me being the rare exception) it's not terrible - just feeling bloated. While the HIPEC gurus consider it ineffective, those at Sloan Kettering have determined that in most cases it is at least as good, and in many cases better, with fewer major side effects. (With my numerous sensitivities, I suffered chemical peritonitis and was in extreme pain (10+ on the pain scale), so I only had 5 of a planned 8 cycles. I spoke with others who had the treatment, and they were uncomfortable, but no pain.) My friends whom I met through MSK are all doing fine at this point - 5 and 11 years out.

    It may be worth travelling, and then finding if there is any way you can get IP chemo administered at home. I do know someone else who went to MSK, but arranged for his IP chemo treatments at his home hospital, even tho they'd never done them before. It's not difficult, if they have access to the chemo drug, as since you have a belly port, they can only infuse it properly, if it is mixed properly.

    Private Message me if you want more info.

    Alice

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