Just found out my husband has cancer!!

mothergrain
mothergrain Member Posts: 2
edited March 2014 in Skin Cancer #1
I just found out my husband has Ocular Melanoma. (cancer in his eye)
He is only 30 years old! i am 26.

The tumor is now too big to be removed by Radiotherapy treatment.
So only solution is to remove the eye.

At first this came as a shock of course, but the most important thing is to get rid of the cancer right?

Well for the last few hours i have been sitting in front of the computer trying to learn as much possible
about this cancer and it's consequences and treatments etc.

I found out that half the people who are diagnosed with this....die!!!
maybe within one year?!!!

(Because it spreads to the liver and then there is no cure.)

The doctor obviously did not tell us this.

And i have not told my husband, as i know he is very very upset about this and needs time to digest.
So i need to find out as much as possible about this and speak to a doctor and hopefully get some advice from you guys too.

We dont know how long he has had this. a few months ago he got blurred vision in his left eye,
it came at the same time as a stye on his eyelid. meaning that went he went to the doctor they said, you have blurred vision because
of your sty, here is some medication, solution for your eye. If it does not go away after three months come back.
So the stye disappeared, but his vision does not return!!!

If they had discovered it earlier, the tumor would be smaller, and it could've been removed without removing the eye, he could've got vision back, and had treatment to avoid the cancer spreading!!!

But now were are here!

And we have to somehow deal with this...the best we can!!

ANY HELP of ANY KIND....would be appreciated !!!
If you know anything about this cancer, if you've been through something similar, or know people
who have. ANYTHING!

Thank you

Luciana

Comments

  • [Deleted User]
    [Deleted User] Posts: 0
    #2
    American Cancer Society
    Hello,

    We are sorry to hear you and your husband are going through such a difficult time. You may want to contact the American Cancer Society's National Cancer Information Center. Cancer Information Specialists are available 24 hours a day to assist you with your questions. They can be reached at 1-800-227-2345. We wish your husband the best on his treatment.

    Kind regards,
    Your CSN Staff
  • Zod66
    Zod66 Member Posts: 28
    #3
    Not a perfect system
    First, you're the first case of this type of Melanoma I've ever heard of.

    Second, I hope you've taken the advice of the CSN staff member and called them for help.

    Third, I get mad all the time with doctors. It frustrates me to have to go see three doctors to get a valid diagnosis. But it is what it is. There is no magic wand they can wave or "One" test we can take to figure out what this incredible machine we call the human body is doing or not doing. And for one person to be knowledgeable about all things relevant to our body is just not a real expectation.

    I truly hope your husband is in the 50% that survive his type of cancer. I know it's not much comfort but his odds are pretty good considering other types and stages.
  • gd68
    gd68 Member Posts: 4
    #4
    I'm a melanoma patient, too
    Hi Luciana,

    Although I do not have the same type of melanoma as your husband, I can sympathize with what you and your husband are going through. Worry, terror, feverish searches for information, hope, and more worry. My husband has started a melanoma blog on www.network54.com (search for melanoma) to discuss anything having to do with melanoma. He is actually extreemly knowledgeable about this disease having researched cancer (GBM brain tumors for 3 1/2 years for his father) and now melanoma with me.

    Our local docs don't seem to know what to do with me... our oncologist had only seen 1 or 2 other melanoma patients in the past 10 years (past stage1 which is "surgically" curable). The same went for our surgeon (only 2 patients past stage 1 in over 20 years). I would say that the most important thing would be for you to get to a hospital which has some level of expertise in this disease. My father-in-law was given 3 weeks and they wanted to operate at the local regional hospital... we went to Duke and pursued trial involvement aggressively and he survived 3 1/2 years, and saw the arrival of his first grandson, traveled to Europe, and published a book. Our health insurance has..so far.. been good about refering us to outside experts.. acknowledging their own lack of experience in this area.

    Have you looked at NCI (National Cancer Institute) in Bethesda, MD. They have many trials going on and once you are accepted all treatment is free of charge (some even pay patient travel). NCI is part of the government's National Institute of Health and are really cutting edge on some things. I know you have to move quickly with this, but after surgery, take some time to figure out what direction you want to move in.

    I hope everything goes well with surgery... and look up the melanoma forum on network54 if you would want to ask my husband any questions.

    Best wishes,
    gd
  • thindmon
    thindmon Member Posts: 2
    #5
    I am sorry to hear your
    I am sorry to hear your news. I was diagnosed stage 4 melanoma at age 31 so I can certainly understand you and your husbands fears. I am here to say that there is hope as I am still here 6 years after being told I had 1 year to live. The best advice I can give is to ge aggressive and research. There is a lot of options out there and have to find the one that is best for your situation.
  • mpmsr
    mpmsr Member Posts: 1
    #6
    Melanoma---support
    Hi Luciana,

    I was concerned when I read you and your husbands' comments.I am a melanoma and skin cancer survivor for 14 years.As a survivor, employee of the American Cancer Society,counselor,teacher,cancer consortium board member and a member of the LIVSTRONG Army, I would encourage you and your husband to go to cancer.org, call 1-800-ACS-2345(24/7/365) ask and keep on asking. There are always options. Always get a second/third opinion. There are many treatment centers and doctors, who can help, but you must be willing to really push. Know both of you are of infinite value and every life matters.Never give up and believe in the power of your spirit and your husbands.I have walked this walk personally and professionally. Believe and push.

    Best wishes and LIVESTRONG

    Michael
  • dmitchell81
    dmitchell81 Member Posts: 1
    #7
    All the Best!!
    Hi im a 31 year old guy living in France who has a simular condition to your husband, My tumor is quite big and have not been told anything about the one year of living. I myself try to be as brave as i can and find it so hard, i have no family here and the girl i love stuggles with it all, so i find myself asking you how have you coped with it all, does your husband get short and finds it difficult, i find my self vomiting and i've started to get hair loss which is really affecting my confidence and any potential relationship i have with this girl,has he felt the same. Do you feel pushed away? i am sorry for all the questions but i just feel pretty much scared and alone. I really apriciate any help and your time for reading this. i hope it all goes well with all of my heart

    David

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