Reacurrance of vaginal cuff cancer

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i just wanted to know if anyone has had reacurrance of their uterus cancer in their cuff?

i had a biopsy done, positive same stage 1.  Dr wants me to have radiation, I got a second opinion at Stanford same info.

has anyone had surgery? I am concer about my existing lymphadem?

 

thanks,  jean

Comments

  • abrub
    abrub Member Posts: 2,174 Member
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    I had recurrence of appendix cancer in the vaginal cuff

    I had surgery to remove it, followed by intraperitoneal chemo.  They discussed radiation, but there were too many unanswered questions in my case, as it has never been used for appendix cancer like this.

    My surgeon was able to leave me with a fully functional vagina.  I had a plastic surgeon participate in case I needed vaginal reconstruction.  One year post-op and all is good in and around the vaginal cuff.  Now I have a new growth in the lower right quadrant of my abdomen.  Watch and wait for now.

  • Jeannie123
    Jeannie123 Member Posts: 18
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    Vaginal cuff

    thanks so much for your response.  I currently feel like a deer in headlights? i never thought for a minute that the cancer would return my Dr said he got everything. I don't know why they never tell you that there is a 2 % chance of it returning.  Excuse my ignorance but did your cancer start in your appendix? My cancer group believes that  surgery would be the best. but it has been 3 months now since my diagnosis and every time you go to a new dr it takes another month. I hope that all goes well for you?

  • Jeannie123
    Jeannie123 Member Posts: 18
    edited November 2017 #4
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    Cuff

    can I ask you where you had your surgery?

  • abrub
    abrub Member Posts: 2,174 Member
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    Cuff

    can I ask you where you had your surgery?

    At Memorial Sloan Kettering in NYC

    Yes, my cancer started in my appendix - you can read my story if you click on my name.  It was spewed throughout my belly.  

    My colorectal surgeon, who performed my prior surgeries for my appendix cancer, did my surgery, accompanied by a Plastic Surgeon and a Urologist (the tumor was entangling one of my ureters.)  Now I'm on watch and wait for my next recurrence, which we now know will just keep happening.  It was 9 years before my first recurrence.

  • Jeannie123
    Jeannie123 Member Posts: 18
    edited November 2017 #6
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    Thanks

    mine was 8 years. I went to three gyn oncologists until I found someone who would use a Speculum For some reason they figure that if your cancer has not come back in a couple of years you are low risk.  It's so hard to be proactive all the time? I had a breast biopsy they missed that the first time and it was cancer. Sounds like you have a good team behind you?

  • abrub
    abrub Member Posts: 2,174 Member
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    Thanks

    mine was 8 years. I went to three gyn oncologists until I found someone who would use a Speculum For some reason they figure that if your cancer has not come back in a couple of years you are low risk.  It's so hard to be proactive all the time? I had a breast biopsy they missed that the first time and it was cancer. Sounds like you have a good team behind you?

    My team is great

    With Appendix Cancer as Primary, we all knew from Day 1 that recurrences occur up to 20 years later, so they were pretty sure I would be monitored for life. That said, my dr commented just before my 2016 recurrence was found (and I was on 18 month scans) that he figured one more scan, and then he'd discharge me from follow-up (at 10 years cancer-free) as he'd never seen anyone with my tumor type have a recurrence at this point.  And then he got back the results of my 9 year scan...  Now it's scans for life.  If I can be of help, PM me and I'll send you my email.  

    Alice

  • Jeannie123
    Jeannie123 Member Posts: 18
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    abrub said:

    My team is great

    With Appendix Cancer as Primary, we all knew from Day 1 that recurrences occur up to 20 years later, so they were pretty sure I would be monitored for life. That said, my dr commented just before my 2016 recurrence was found (and I was on 18 month scans) that he figured one more scan, and then he'd discharge me from follow-up (at 10 years cancer-free) as he'd never seen anyone with my tumor type have a recurrence at this point.  And then he got back the results of my 9 year scan...  Now it's scans for life.  If I can be of help, PM me and I'll send you my email.  

    Alice

    not sure how to pm I am a newbie at this?

  • Kaleena
    Kaleena Member Posts: 2,088 Member
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    Symptoms?

    Hi Jeannie:

    I have several soft tissue masses.  I know have one that is attached to my vaginal cuff.   They are unable to determine what it is although it did have irregulr borders.   I did have a recent rectal EUS and they did a biopsy, but the biopsy was in the perirectal region and I don't think it was at the cuff.   I most recently had a PAP smear and am still waiting for the results.  I meet with my oncologist regarding the EUS results on Thursday.  I will let you know.

    Kathy

  • abrub
    abrub Member Posts: 2,174 Member
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    not sure how to pm I am a newbie at this?

    I sent you a message

    Check your CSN Email.

    Alice

  • takingcontrol58
    takingcontrol58 Member Posts: 272 Member
    edited November 2017 #11
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    Jeannie,

    Two months after my total hysterectomy, I grew 34cm of new tumors in multiple locations. 
    I had a 5.1cm tumor on my vaginal cuff/outer rectum. This is a frequent site of metastasis as
    this is where the surgeon makes the vaginal cut. Lots of loose cancer cells floating
    around. This happened before I even began my initial chemotherapy. I had no radiation.

    I also was put on the drug metformin after 2 chemo infusions by my integrative oncologist. Within 6
    months, I was completely cancer-free. The 5.1cm tumor on the vaginal cuff took the longest to go
    away, along with a lesion on my spleen. I only had a total of 6 chemo infusions and have remained
    cancer free. It is over 3 years now.

    A couple questions.  What grade is your cancer?  You mention you are Stage 1? I think the grade matters
    more as it tells you how fast the cancer is growing.  You are more at risk for a recurrence if you are a
    high grade (I was Grade 3). 

    I would suggest you do genomic profiling through Foundation One on your original tumor.  Your surgeon
    can send it in to them.  It will tell you what is driving your cancer. Something makes your body grow cancer
    and you need to determine what that is.  The results of your gene mutations will give you more information
    to make an informed decision.  It took about two weeks for me to get the results.

    Doctors always say they got everything.  My doctor said the same thing to me. Doctors never know
    if they got everything because cancer cells are invisible. When you get cut open, you release more 
    cancer cells into your system and if your body is still a fertile ground to grow cancer, it will. I 
    grew more cancer after surgery than before surgery.  But everyone has to make their own decisions.

    Takingcontrol58

  • Jeannie123
    Jeannie123 Member Posts: 18
    edited November 2017 #12
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    Kaleena said:

    Symptoms?

    Hi Jeannie:

    I have several soft tissue masses.  I know have one that is attached to my vaginal cuff.   They are unable to determine what it is although it did have irregulr borders.   I did have a recent rectal EUS and they did a biopsy, but the biopsy was in the perirectal region and I don't think it was at the cuff.   I most recently had a PAP smear and am still waiting for the results.  I meet with my oncologist regarding the EUS results on Thursday.  I will let you know.

    Kathy

    Thank you for your response. Good luck with your test results I hope all goes well?  Jean 

  • Jeannie123
    Jeannie123 Member Posts: 18
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    Jeannie,

    Two months after my total hysterectomy, I grew 34cm of new tumors in multiple locations. 
    I had a 5.1cm tumor on my vaginal cuff/outer rectum. This is a frequent site of metastasis as
    this is where the surgeon makes the vaginal cut. Lots of loose cancer cells floating
    around. This happened before I even began my initial chemotherapy. I had no radiation.

    I also was put on the drug metformin after 2 chemo infusions by my integrative oncologist. Within 6
    months, I was completely cancer-free. The 5.1cm tumor on the vaginal cuff took the longest to go
    away, along with a lesion on my spleen. I only had a total of 6 chemo infusions and have remained
    cancer free. It is over 3 years now.

    A couple questions.  What grade is your cancer?  You mention you are Stage 1? I think the grade matters
    more as it tells you how fast the cancer is growing.  You are more at risk for a recurrence if you are a
    high grade (I was Grade 3). 

    I would suggest you do genomic profiling through Foundation One on your original tumor.  Your surgeon
    can send it in to them.  It will tell you what is driving your cancer. Something makes your body grow cancer
    and you need to determine what that is.  The results of your gene mutations will give you more information
    to make an informed decision.  It took about two weeks for me to get the results.

    Doctors always say they got everything.  My doctor said the same thing to me. Doctors never know
    if they got everything because cancer cells are invisible. When you get cut open, you release more 
    cancer cells into your system and if your body is still a fertile ground to grow cancer, it will. I 
    grew more cancer after surgery than before surgery.  But everyone has to make their own decisions.

    Takingcontrol58

    Thank you for taking the time to respond.  It is a lonely world out there when you find you have cancer your friends offer help but do not want to get involved.  I think I am just tired right now after 3 trips to Stanford in a week, it is not like me to be so indecisive?  I already had genetic testing which came back normal in fact I just got a eob yesterday for $4000 for the test another call to make tomorrow? I will check my grade and let you know? 

    I am so glad to hear you are cancer free, what great news.  I also thought abou going on metformin since my sugar level does get ugh if I don't watch what I eat and exercise. 

    Thanks again

  • takingcontrol58
    takingcontrol58 Member Posts: 272 Member
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    Jeannie

    You say your genetic testing came back normal.
    Do you know what company was used for the testing?
    Genetic testing tests for a predisposition for various diseases.
    Many people only get tested for inherited mutations, which only
    account for 5-10% of all cancers. Most of our mutations are
    caused by our lifestyle or environment.

    Genomic testing is testing on your actual tumor tissue.
    Was your actual tumor tissue tested?

    Are you saying you have no gene mutations?

    If we knew your mutations, we would know if metformin targets some 
    of those as well. It is known to target some mutations popular in
    endometrial cancer. We know it will lower blood glucose and insulin levels
    which are key fuels that make cancer grow.I was pre-diabetic (borderline
    high levels of glucose) but had very high levels of insulin and IGF-1 
    (insulin like growth factor-1, which is known to be raised in EC and can
    cause one of the most popular mutations).

    Metformin could help you anyway. If your tumor is on the vaginal cuff, you need
    to understand that after surgery, angiogeneis happens- new blood vessels are
    formed to help repair our wound.  But angiogenesis also is what makes cancer
    cells grow into tumors. The blood vessels form to feed the tumor.  Metformin
    is known to stop angiogenesis. I still had 1cm of that vaginal cuff tumor after
    I stopped chemotherapy. Two months later it was gone.  I just remained on the
    metformin and all my supplements and low dose aspirin. I remain on these today.

    Feel free to send me an email and we can discuss this in more detail if you like.

    Takingcontrol58