have you ever heard anything like this?

charelaine
charelaine Member Posts: 36
edited March 2014 in Colorectal Cancer #1
I am a stage 3 colon cancer survivor. I went for my one year anniversary colonoscopy in March, and they found one polyp, which they removed. (I don't remember the name of the type, but it was the one that would have turned into cancer if left there, but it was benign now). Anyway, I wondered what you all think about that. I had FOLFOX from April 06 thru September 06, and I had radiation thru Nov. My original tumor was in the sigmoid colon, 8 out of 12 nodes positive, colostomy done (still have that).

Another thing, I went for the CT scan that was supposed to tell me I was NED, but instead it came back showing a 5 cm mass to the right of my uterus. I got this news the afternoon I returned home from a colposcopy, because my gyn said something was "not right" about my pap and pelvic exam. Now they have referred me to a gyn onc. to have a look at, remove mass (?), and I guess determine what it is. has anyone heard of colon cancer moving into either my vagina, on my cervix, or on the uterus? They cannot for sure even tell where exactly it is, even though they did a vaginal ultrasound.

Just wanted thoughts. If you need more info, please ask. I will tell all, I am no longer shy about bodily functions.

Thanks to you all.

P.S. There was a guy who was going to start chemo around the same time as me, **** or Dean. How is he doing, do you all know?

Comments

  • KierstenRx
    KierstenRx Member Posts: 249
    #2
    I had genetic counseling after I was diagnosed with stage 3 rectal cancer last September. He said that with my family history there was a good chance I would test positive for Lynch Syndrome. With that you have an 80% chance of getting colon cancer (I'm 32), he also said I would have a 60-70% chance of getting Uterine cancer (my Grandmother and Great Aunts had that and colon cancer) and another 20% chance of ovarian cancer. I elected to have a total hysterectomy at the time of my surgery in February to avoid that possibility. I hope that info helps. I will keep you in my prayers. Please keep us posted.
  • KathiM
    KathiM Member Posts: 8,028 Member
    #3
    KierstenRx said:

    I had genetic counseling after I was diagnosed with stage 3 rectal cancer last September. He said that with my family history there was a good chance I would test positive for Lynch Syndrome. With that you have an 80% chance of getting colon cancer (I'm 32), he also said I would have a 60-70% chance of getting Uterine cancer (my Grandmother and Great Aunts had that and colon cancer) and another 20% chance of ovarian cancer. I elected to have a total hysterectomy at the time of my surgery in February to avoid that possibility. I hope that info helps. I will keep you in my prayers. Please keep us posted.

    Me, too. Although, it was an easy decision...I was 49 at the time...WAY past any thoughts of childbearing. Breast cancer followed 6 months later.
    Mom had endometrial and breast cancer, her father died from colon cancer...
    I am almost 2 years post-surgery....occasional hot flash, but I can't do hormones...the breast ca was hormone receptor positive.

    Prayers from here, too!

    Hugs, kathi
  • kmygil
    kmygil Member Posts: 876 Member
    #4
    After diagnosis with Stage II colon cancer my oncologist recommended a genetic test due to family history. Turns out that a gene mutation runs in my mother's line which carries an 85% risk of colon cancer, a 65% chance of uterine/ovarian cancer, a 12% chance of kidney and/or bladder cancer, and some smaller chance of several brain cancers. So be sure that you follow up with your gyn on this. My family's gene mutation does not involve polyps--the cancer just shows up. But you really, really need to get your mass checked out, and be sure to follow up with the colon cancer.

    I'm praying for you.
  • JADot
    JADot Member Posts: 709 Member
    #5
    Hi Charelaine,

    HNPCC, Lynch's Syndrome, that's the genetic mutation that predisposes women to colon, ovarian and uterine cancers. I have it. So, it's not so much of colon cancer spreading to other parts, but one can have multiple primes. Not a lucky draw.

    That said, your doctors seem to be on top of things and are scanning you. Seeing a gyn-onc is a great idea. I did it too, just to make sure. I am being watched by my regular onc and a gyn-onc all the time and I have 6 months PET scans.

    Best of luck to you.

    Cheers,
    Ying
  • Arex630
    Arex630 Member Posts: 8
    #6
    When I was first diagnosed with my small bowel cancer (stage IV) May 2005, my right ovary was involved. Following 6 months of Folfox and 4 months of leucovorin, 5fu & Avastin I had a recurrance at the site of where my right ovary was removed. I saw a gyn oncologist and decided to have a total hysterectomy as the doc said it isn't uncommon for colon/bowel cancers to spread to the ovaries, uterus and/or cervix. I was lucky that both my cervix & uterus were clear but the cancer had spread to my left ovary and the mass that was where my right ovary had been was also malignent. Since I was 52 at the time I am glad I had the hysterectomy even though it may not have any effect on my prognosis, at least there's less stuff to get in the way during a CT so any new growth will be better visualized.
    Best of luck to you!!
  • charelaine
    charelaine Member Posts: 36
    #7
    Thanks to you all. I had heard of Lynch syndrome before. actually, doctors have been brandishing that term since day one, since I was 29 when diagnosed. I am only 30 now, but already menopausal, so if they suggest a hysterectomy, I'm on it. I have three kids and my tubes were tied.
    I just never dreamed that colon cancer itself would move into the vagina or cervix, or uterus, wherever my mass is located. I guess I felt like it would be a new cancer that was created by the Lynch syndrome mutation.
    Let me add here that I am still hopeful that this is just a benign tumor, and will just need to be removed. It has been a long year, but I don't feel sick. I really don't feel like a cancer patient, you know what I mean? So I think I have a pretty positive attitude.
    I am just confused. This waiting for answers is hard. my appointment is not until Thursday, and I am going to drive myself crazy. it is more worrying about planning the future. I went back to college after chemo, and I am supposed to register for the summer and fall semesters Monday, and I have no clue what is going on or what is going to happen.
    Hypothetically, what could happen? regardless, they are going to have remove the tumor, right? And if it is a cancer, some chemo, maybe radiation? Possibly a hysterectomy? And I should probably forget about my colostomy reversal for now, right? Any guesses?

    Thanks again,
    Charlotte
  • Arex630
    Arex630 Member Posts: 8
    #8
    Charlotte,
    Hopefully it is a benign growth!!!!!

    At your appointment Thursday you may want to find out if the doc will be doing a frozen section while you are on the operating table. If they are and it turns out not to be benign you maybe able to have a hysterectomy at the same time and save yourself a surgery. As to your colostomy being reversed, one of my chemo buddies had that done even though a new mass had developed in her abdomen so you may want to ask your surgeon about doing that at the same time as the tumor removal. I try to get as much done at one time as possible cuz I don't recuperate quickly from surgery.

    Try not to worry. I did 6 months of FOLFOX with Avastin and then after my hysterectomy and tumor removal I did 3 months of FOLFIRI w/Avastin. I had to stop that due to a chest infection. I will be getting the results of a bronchcoscopy I had last Wednesday and of a cyscoscopy/utereroscopy I'm having Tuesday on Friday to see if I'll have to go back on chemo. So I do understand how hard it is not to worry!


    Hang in there,
    Aleda

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