BARTHOLIN GLAND CANCER / VULVA CANCER

Ruby3
Ruby3 Member Posts: 30
edited May 2023 in Gynecological Cancers (other than ovarian and uterine) #1
Has anyone out there been diagnosed with Bartholin Gland Cancer / Vulva Cancer?
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Comments

  • MMacaluso1
    MMacaluso1 Member Posts: 9 Member
    #2

    Looking to hear from anyone that has had or has this cancer. It’s so rare I am having trouble finding information.

  • bull15
    bull15 Member Posts: 10 Member
    #3

    Are you still here ?? This was posted so long ago . I am getting treated for Bartholins ACC

  • MMacaluso1
    MMacaluso1 Member Posts: 9 Member
    #4

    Yes I’m still here I just finished chemo and radiation the end of September. Had a good scan post treatment and I’m feeling really good. Where are you at in the process?

  • bull15
    bull15 Member Posts: 10 Member
    #5

    I had surgery in October and tumor showed positive margins so tumor board consensus was radiation treatment for 6 wks . I had to stop for stage 3 radiation dermatitis and proctitis . What a barberic treatment . I am not continuing to do this . I hope to recover fully and not have the awful side effects that seem to be common with radiation to vulva . I am only 45 yrs old !

  • MMacaluso1
    MMacaluso1 Member Posts: 9 Member
    #6

    I had nine weeks of radiation, and six weeks of chemo. It was brutal. But there was a light at the end of the tunnel so far so good ,have to do scans every four months. I hope you recover fully and have no reoccurrences. You are very young. I was “only” 58 at diagnosis. ☹️

  • bull15
    bull15 Member Posts: 10 Member
    #7
    https://csn.cancer.org/discussion/comment/1703898#Comment_1703898

    I am glad you are doing and feeling well . Radiation to vulva ? Do you have any side effects like sexual dysfunction or vaginal stenosis?

  • MMacaluso1
    MMacaluso1 Member Posts: 9 Member
    #8

    Yes radiation to the vulva and whole pelvic region. No side effects 4 months out as far as sexual function or stenosis. Some soreness still in the surgical area and lots of skin care needed to keep radiation area smooth. I use being naturals, aloe vera gel Infused with Minuka honey and stem cells. It’s amazing.

  • bull15
    bull15 Member Posts: 10 Member
    #9

    Thank you for getting back to me . Yes . Lots of skin care for sure . I am in acute phase still so I am still using silvadene for weepy areas and calendula and lidocaine . Symptoms are improving but still so tender burny and itchy! I think I may be obsessed with post radiation issues concerning quality of life ! Just such a tender intimate area . It’s our center .. you know?

  • Judemo
    Judemo Member Posts: 172 Member
    #10

    Hello and sorry to hear about what you've been through. Could you share what your symptoms were before finding out what you had? Thanks so much.

    jude

  • bull15
    bull15 Member Posts: 10 Member
    #11
    https://csn.cancer.org/discussion/comment/1703987#Comment_1703987

    Hi Jude ,

    Tenderness when wiping , washing and with intercourse. I could also palpate a small “ nodule” but only I could . Had to show Docs exactly where it was for them to feel .

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #12

    hello ladies, I am a visitor from the Uterine board and wanted to check in our other gyn sisters. I have to tell you how my heart goes out to you. Rare and trying to find others going through it all - I am so glad you found each other. My prayers go to all of you for healing.

  • MMacaluso1
    MMacaluso1 Member Posts: 9 Member
    #13
    https://csn.cancer.org/discussion/comment/1704259#Comment_1704259
    https://csn.cancer.org/discussion/comment/1703987#Comment_1703987
    https://csn.cancer.org/discussion/comment/1703987#Comment_1703987

    I think you will recover fine. It does take some time though I am four months out and still not fully recovered. But each day things get closer and closer to being back to normal. Hopefully it stays that way. Good luck to you take good care and check back in every now and again if you have any questions or discover anything new that you could let me know about.

  • MMacaluso1
    MMacaluso1 Member Posts: 9 Member
    #14
    https://csn.cancer.org/discussion/comment/1704259#Comment_1704259

    Thank you. It’s a scary road but faith in God ,the doctors and a positive attitude keeps you going. I think the worst part is that it’s rare so nobody can tell you much of anything about it. And there’s not many people to talk to about it.

  • MMacaluso1
    MMacaluso1 Member Posts: 9 Member
    #15
    https://csn.cancer.org/discussion/comment/1703987#Comment_1703987

    A found a small lump ion the left side near backside groin/ vulva area ( Bartholin gland) Doctor said it was common and to watch it …well within a few months it was large and they did surgery and took it out and it was squamous cell carcinoma. Pay attention to your body and you gut instinct s.👍

  • bull15
    bull15 Member Posts: 10 Member
    #16

    Yes and my particular cancer is not squamous cell which 95 percent of vulvar cancers are . Mine is a glandular cancer called adenoid Cystic carcinoma . It was in Bartholin’s gland . Rarer than rare

  • Belindasd1955
    Belindasd1955 Member Posts: 13 Member
    #17

    Hi ladies. I had what was determined to be precancerous cells in the perimeum area, VIN 1 and VIN 2. Symptoms were limited to itching. I had surgery in August. A week later I had a severe infection. Staying clean & dry can't be overstated. I had a terrible time finding info on vulvar cancer...very little information available. I so appreciated being able to connect using this forum. I received invaluable info from someone about a month ahead of me in treatment of the same problem. I got great tips on what to do to prepare for surgery, what to expect and what to be sure to have available while recuperating. Thank you to all of you. May God Bless.

  • MMacaluso1
    MMacaluso1 Member Posts: 9 Member
    #18
    https://csn.cancer.org/discussion/comment/1704429#Comment_1704429

    Thanks for sharing. The more people we have sharing experiences the better prepared and comforted we can be. I had absolutely no symptoms until I found the tiny lump. So glad you shared your symptoms so we can see that there are so many things to pay attention to and not ignore, even if you think it might be something else…👍🙏🏻

  • Judemo
    Judemo Member Posts: 172 Member
    #19
    https://csn.cancer.org/discussion/comment/1704273#Comment_1704273

    Thank you for your reply. I am having some weird symptoms and your answer has helped. I wish you well and healing.

  • Judemo
    Judemo Member Posts: 172 Member
    #20
    https://csn.cancer.org/discussion/comment/1704429#Comment_1704429

    Thank you for sharing and your reply. I found an area on vulva that looks like a round whitish spot, looks more like mucous, but it won't go away. I also feel a hard area inside to the back of the vagina wall and it feels as if something is falling out of the vagina, kind of like a tampon. At times I have a little pain in the lower right side. I just need to make myself call my DR. I looked online about those symptoms and I saw that it could be a vaginal or bladder prolapse. I have a history of uterine adenocarcinoma with a radical hysterectomy back in 2014. No further treatment was needed, but now I am experiencing the new symptoms. I also had a double mastectomy back in 2021 for breast CA with no further treatment needed.

    I wish you ladies healing and peace.

  • Judemo
    Judemo Member Posts: 172 Member
    #21

    Correction: When I am walking or coughing, that is when it feels as if "a tampon" is falling out of the vagina. That's a weird comparison, but that is exactly what it feels like. I just dread any new treatments or surgeries, you know what I mean?! The more I look online it seems to suggest bladder or vaginal prolapse.😔

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