Home Forums Melanoma Diagnosis: Stages I &II Difficult Choice

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  • #21699
    ovaques
    Participant

    Hi All,

    I have had one melanoma in situ and am “high risk” due to dysplastic nevi syndrome but am NED as far as I’m concerned.

    Reluctantly had an abdominal and pelvic CT with contrast this past November. This because I had only 2 instances of gross hematuria (99% certain it was urethral rather than vaginal) one day in October. Had been out-of-town and was advised to go to urgent care or ER. Didn’t wish to but went to ER. Dipstick test to them indicated UTI. 3 days of Bactrim and no more bleeding or dysuria. (Dysuria followed onset of blood.) ER promised to do culture and sensitivity test, but never did. A shame. However I understand how these things happen. They are dealing with a wide spectrum of major diseases and injuries coming through their door.

    Have previously had a LSH (laparoscopic supracervical hysterectomy) in 2009 largely because of fibroids pressing on my bladder creating urinary frequency beyond belief. This on top of dysmenhorrea for years…

    …anyway, fast forward to now. 2 lesions near left ovary. One just under 4 cm, the other just under 2 cm, as well as a simple cyst for good measure. Multiple nodular implants in the cul-de-sac. So not happy about this stuff lighting up with enhancement. All nearby organs were clear, again extra-ovarian lesions and nodular implants in the peritoneal cavity. I’m in my mid-forties.

    The most likely culprits are late stage ovarian cancer or (hopefully) endometriosis. A core needle biopsy through my left glut was unsuccessful because the lesion was mobile. (Mobile versus fixed is “good”, but I’m not hanging my hat on that.) The interventional radiologist then attempted a FNA but cytology was inconclusive.

    So my question is regarding the link between invasive melanoma and ovarian and/or endometrial cancer. From what I can surf, it doesn’t appear to be uber-strong. That is, although melanoma can be wily and unpredictable, melanoma…when…if…it metastasizes…tends to go to lung, brain, bone and/or liver.

    I realize everyone is an individual. And, the only way we’re going to know is to biopsy. However, I would appreciate a little extra background on this. The protocol is a “gynecological oncologist” has to be the one to do this surgery because if it is cancer, they do a more extensive staging operation before closing me up due to “seeding” concerns. Not happy. Seems contrary to the idea of getting second opinions about pathology of lesion, e.g., is it epithelial cancer, endometriosis, ovarian lymphoma (rare), ovarian tuberculosis (also rare). Also turns it from a “minimally invasive” laparoscopy in to a laparotomy with the associated risks of complications, morbidity, and recovery time, etc. Six plus weeks recovery time, assuming no complications. It’s basically major abdominal pelvic surgery. They would take ovaries, fallopian tubes, cervix, omentum, certain lymph nodes, and on and on.

    Sorry for the less than cheery intro. Not happy with array of choices and 2nd opinion from unaffiliated gyn onc confirms surgery is the way they are supposed to proceed. I feel 100% awesome (isn’t that always the way and how lucky am I?). No one is supporting a wait-and-see approach, except for a few friends who know me well.

    Can’t help wondering if this is possibly (although unlikely) metatastic mel mimicking ovarian cancer? Wouldn’t know until we biopsy, I know.

    Would anyone simply wait until he or she experienced pain and/or felt bad? What is the real harm in that we know that this is not Stage I ovarian cancer, which is the only ovarian with a “good” prognosis? No milestones to try and reach (e.g., no children, grandchildren, etc.), simply wish to live each day as well and as comfortably as possible. What would you all be inclined to do, or not do, if you were me? Hard choices. Thank you.

    #63133
    Catherine Poole
    Keymaster

    Sounds like a scary time for you. Try to take some deep breaths and take care of finding out the cause of this abnormality. I’ve not seen any connection between melanoma and ovarian cancer. I worked in ovarian cancer prior to melanoma (a strong connection to a friend with the disease) and know the scare involved with this. It is a rare disease indeed. I would see a gyn/oncologist at a teaching/center of excellence and find out what is going on. The group I worked with is National Ovarian Cancer Coalition (NOCC) http://www.ovarian.org and they have a list of gyn/oncs. You can also call them. Endometriosis is very common in comparison and you want to get that squared away as well. Let us know how you are doing and what you find out.

    #63134
    ovaques
    Participant

    Deep breaths help, thank you. I am relieved there is no connection between melanoma and ovarian cancer. I am sorry your friend had to wrestle with the disease.

    I will contact the NOCC. It feels strange to be hoping for severe endometriosis. I do have a history of at least some endo.

    Thanks so much for the help with the melanoma question as well as the additional gynecological info.

    #63135
    Catherine Poole
    Keymaster

    Keep us posted!

    #63136
    dk06
    Participant

    My mom (in her 80s) had a CT for micro hematuria and the results were very concerning to the doctors. She had multiple complex lesions on/around her ovaries, extremely thickened uterus, and a rather large lesion on her gallbladder. She saw a GYN and a gallbladder doctor…both recommended surgery. They did do laparoscopic on her though for a full hysterectomy and gallbladder removal. All lesions turned out to be completely benign. What looked on the CT to be an ovarian cyst turned out to actually be a mass behind her ovary. One of the ones they removed was almost the size of a baby’s head.

    I had googled melanoma and ovarian/uterine cancer since I was worried she may have an un-diagnosed primary that had spread. I didn’t really find any connection.

    Here’s hoping yours are all completely innocent as well! There can be some weird stuff in our bodies that are innocent.

    I have consistent micro hematuria and actually had a abdominal ultrasound for it the day that I found out about my melanoma diagnosis. That revealed a simple cyst on my kidney. I then had a CT with contrast “just to be safe”. 3 years later, my urologist wants me to have an ultrasound repeat to “just make sure” the cyst has not grown.

    I know these tests do great at catching things early, but lots of times, these tests result in incidental findings that cause stress and further medical treatment.

    Good luck!

    #63137
    Worrywart
    Participant

    So….what was the result? Hope to hear good news!

    #63138
    ovaques
    Participant

    The lesions were part of a benign disease process. I do not have ovarian cancer. Thank you very much for your concern and help. I am so grateful that I feel like doing a jig, but I ought let my belly recover from surgery first.

    #63139
    SleepyKitty
    Participant

    I’m so glad I found this group. I’m going in for a hysterectomy (uterus and cervix only) in a couple weeks. The doctor and I chose to take the cervix as well due to my prior abnormal pap a few years ago (forgot what they called it but they said it was a stage below cancer) which required a LEEP to remove. It’s a relief to see that there really isn’t any connection between my cervical cancer risk and my recent melanoma.

    I hope you are recovering well!

    #63140
    Abby
    Participant

    Hi Ovaques,

    I have been off the forum for a while. I am in an almost identical position as yours. I had a full hysterectomy scheduled for April 10th and they would then remove a growth happening on the outside of my uterus, that lit up big time on a PET scan in Jan.

    I cancelled the operation. I am just so tired of pain and surgery. 2 yrs and 9 months ago, I was diagnosed with an aggressive nodular mel, that had grown for about 3 yrs (misdiagnosed by family doctor). I had some pretty major reconstruction surgery and SLNB done. I live with constant nerve pain, although I push myself to continue sports and work full time.

    I am planning the surgery for Nov. Wait and see in the mean time. I just could not do it.

    How long did it take you to recover from the hysterectomy? I need to work (live alone) so am only planning on less than 2 wks off work after my similar surgery to yours.

    There is not much of a link between melanoma and uterine cancer, but it is hard to be reassured by that when there is an unknown entity living in your pelvis. I have no symptoms of a fibroid. We aren’t sure what it is.

    Anyhow, would appreciate any info/suggestions/tips you have for a speedy recovery.

    I presently have 5 stitches in my left shoulder for another suspected melanoma primary. Awaiting the results. It was a light mole that turned dark and doubled in size/thickness the past 3 months.

    I am sure I am not alone in being tired of being cut. This one was a full excision. Derm must have some concerns, because she always biopsies first. This time she went to full excision, as she didn’t want it to stay another minute!

    This stuff doesnt really get easier. Just goes in cycles it seems.

    #63141
    ovaques
    Participant

    Hi Abby,

    I am so sorry for not having replied to you until now. I wish you the very best in terms of the surgery you are planning to have in November. The single best resource I found regarding what to expect, recovery times, and helpful tips was http://www.hystersisters.com” class=”bbcode_url”>http://www.hystersisters.com. Very helpful articles, videos, and a forum.

    My own tips for a speedy recovery are to do as little as possible for as long as your doctor says. One thing you can do the day after surgery is walk. Walking will be so very good for your physical recovery and emotional health. If you don’t already practice mindfulness meditation, please consider starting now (even though your surgery is six months away). It will be a godsend for you and very rewarding throughout your life. Here is a link to a talk that Jon Kabat-Zinn gave to Google: http://m.youtube.com/watch?v=3nwwKbM_vJc” class=”bbcode_url”>http://m.youtube.com/watch?v=3nwwKbM_vJc. I pass it along because it is free and a nice intro to mindful meditation. I recommend you listen to the entire talk at least once. Then, before you invest in any books or guided meditation CD’s, you could scroll to 22:56. If you play the portion from 22:56 to 47:35, it is actually a very good guided meditation that you can use again and again.

    I hope that your latest pathology results were good. If you wish to PM me, please feel free. Be good to yourself.

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