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Just found out my husband has cancer!

mothergrain's picture
mothergrain
Posts: 2
Joined: Sep 2008

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

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

Hi Luciana. I am sorry that you and your husband are facing cancer. I am a cancer survivor. B-Cell Lymphoma in the face. I hated to see your request for information just sitting here when your struggling to deal with this. It is a good thing to get as much information as possible on any cancer and treatments. Most major hospitals or cancer centers have information you can access on the computer. His age, physical condition and the will to fight play a major role in cancer treatment. And all of those can change the odds of beating cancer. At 48 years old I had a 50% chance and am now 5 years cancer free. I had a simular situation with a dentist and 2 years of root canals only to find out I had cancer in my facial nerves and along the bones. Its frustrating when we have that lost time but we have to move on and start our fight with cancer. Be aggressive and push appointments, operations and therapy ahead. Don't become a number in the system. Your proubly a bit numb from this whole mess so write down questions and take them with you and your husband to the doctors office. I know its hard and depressing but try to think positive. Keep good people around you and keep away from the ones that bring you down. Hug your husband and cry when you need too. You are now a caregiver so it would be good if you read some of the stories there. God bless you and your husband. Slickwilly

green50
Posts: 318
Joined: Feb 2008

Sorry for what you are going thru. Get the info you need from cancer centers and try to have a positive attitude. Believe I know its hard. His age will help and we all react different to meds and different treatments the cancer dr will know what to do and explain to you. Sometimes things spread but it doesnt mean it will. I have ovarian and it came back in lymphnodes 6Years ago. Its still just in my lymphnodes and very small. I am still doing well after 7 years. There is no time limit. No one can predict if it will even come back after treatments. Many are cured from treatments. People like me control it thru chemo. I am not familiar with your husbands cancer but there is ALWAYS hope I have seen alot of cancers cured or controlled. Get info and God Bless you and give you strength for being a care taker to him. OH yes and if one Dr seems not to make you feel comfortable and give you all info find someone who does.
Prayers and HUgs
Sandy

TereB
Posts: 288
Joined: May 2003

I am sorry about your husband. I agree completely with Slickwilly. I would like to add something. First, not all patients are the same, each and everyone is different, each reacts different to surgery and treatment. Second, do not believe everything you see in the internet, pay more attention to where the information is coming from.

Has your husband had an MRI or a scan to check his liver? Just because it happened to other people does not mean it will happen to your husband. Ask the doctor all the questions that come to your mind, take notes so you won't forget what he said.

I know this is a difficult time and also scary. Feel free to come here and post anytime you feel like it. People here are survivors, are nice and like to give support to others. You can also try the survivor chatroom, people are nice and helpful.

Please let us know what happens. In the meantime you two will be in my prayers.

Hugs and prayers,
Tere

Cyndi321
Posts: 3
Joined: Mar 2009

I need someone to talk to.
I am so sad. Sadder than I have ever been in my life.

My wonderful husband for the last 30 yrs has been diagnosed with liver ADENOCARCINOMA from the gallbladder. He is very ill & can barely walk. We havent even started treament yet & he had lost 30 lbs already, is in pain & can hardly eat. Wasting away in bed.

I have never been so grief-stricken or so frightened of the future.
He has an appt with an oncologist in a few days who will give us some advice on how to treat this (if it's treatable).
Until then, all I can do is surf the internet looking for a shred of hope somewhere.
The doctor said not to do this, that it will only fill me with anxiety. I'm full of anxiety anyway, can't sleep or eat or think of anything else. My heart is breaking.

I love my husband so much & I feel so helpless.
I can't stand to see him suffer so. He deserves so much better.
We were about to retire & find our homestead to live out the rest of our years happilly.
Now i'm having to face the possibility of living my remaining years alone & without him.
I don't think I can if it comes to that.

I'm having difficulty accepting this.
I know I should be strong for him & encouraging even, but I can't stop crying all the time
& am fearful of the worst. I can't help it, it shows on my face & then he tears up too.

Please God, don't take his life & my heart.
I can't live without him & I don't want to try.

My heart goes out to all of you out there who are going through this..
You too are in my prayers.

Thanks for letting me rant like a 6 yr old.
Cyndi in calif.

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

Cyndi. I am so sorry. You have every right to come here for support and I would recommend the caregiver or emotional support section of the discussion board. You are among many that have faced the same effects of cancer and the emotional turmoil it throws into our lives. I am sorry that your husband is suffering I would imagine the Oncologist will help in that respect. Its a good idea to make a list of his symptoms and daily pain so you can tell the doctor during your visit. Also having paper and pen in hand to write things down. When we first visit doctors after a diagnosis its sure easy to forget things as we are in a fog with too many thoughts rushing at us. I am 53 years old and have been married 33 years. I had cancer 6 years ago while I still had 3 children at home. Many of us here understand what your going through. You will find a very caring and supportive group of people here that will respond to your questions, concerns or just general venting. You can come here and vent and you will not be judged as we all vent at times. Your husband is blessed with a wife that loves him and will stand by him. And as a wife and loving caregiver you have the respect of many people here. You and your husband will be in my prayers. Slickwilly

green50
Posts: 318
Joined: Feb 2008

Cyndi as Slickwilly said there is always hope we cannot go by statistics> I read about a gentleman in his 60's with liver cancer who went to Chicago oncologist and they put some kind of chemo directly into liver and do it every so often. He said it made him tired but he still plays golf. He is still around after 2 years of this and seems to be doing well. There are so many who have been helped thru postive attitude and loving people like you and good oncologist and cancer centers. I have been thru ovarian for 7 years and I still take chemo off and on but only makes me tired I still do things. You being a care taker is tough. I too had to help my husband. Everyone responds different to medicines and sometimes they try different treatments. But as Slickwilly said Write questions ask the Dr. We are all here for you if you need to "Vent" we all do it. And I feel blessed I found this site.
Prayers and Hugs
Sandy

Reesee
Posts: 2
Joined: Apr 2009

Hi Cyndi, My dad was diagnosed in Oct. 2008 with cancer which has spread to his bones and brain, they don't know were the primary is located. My dad was 58 when diagnosed, it took the family by surprise, we were totally blind sided. My dad began treatment in Nov. 2008 Carboplatin/Taxol and Zometa every 3 weeks. We have had some bumps along the way, but manage to get over them. All of us were very sad when we first found out, crying all the time, and in shock with what my dad had to go through and what his future may hold. I would cry at night, praying that everything would work out. It has been many months now and my dad is doing well, the doctors are going to give him a break from treatment, and if all goes well the break maybe extended, depending upon test results. If however, anything pops up along the way he will be put into a clinical trial. I understand the sadness you feel, I console my mom when she's sad, she can not imagine not having my dad around, They just celebrated their 38th wedding anniversary. I know what my dad has is advanced but, I remain positive, strong, and faithful that everything will go well. In the beginning it is very hard it's like everything you had planned for the future is thrown up in the air. It feels like your emotions are all over the place, you think how can this be happening. Well, it has been 7 months now and I continue to cherish everyday I have with my dad. When my mom is feeling sad which tends to be more at night, I tell her everything will work out and to enjoy every moment you have with him. I tell her dad is strong, he will fight this with tooth and nail. I am praying everything will go well for your husband and yourself.

worldpeace
Posts: 2
Joined: May 2009

Cyndi:
My husband was diagnosed with adenocarcinoma w/unknown primary and mets to the liver on April 9, 2009...5 days after we were married. He is only 55.

I have felt and still feel much the same as you. I cannot imagine my life without him. I have cried and cried. At times I don't think I have any tears left, then out of the blue they come again.

I am so thankful that I work at the medical center where he is being treated. It makes me feel like I have a (small) part in his care because I know who to go to for assistance in wading through the drama of health care.

I will also tell you that Duane has been responding very well to his chemo cocktail: Gemcitabene, Oxilaplatin & Avastin. We are thrilled and will take any victory, no matter how small.

Take care my friend, I will be praying for you both.

Lori

AllyPaul
Posts: 4
Joined: May 2009

Cyndi my husband has also been diagnosed w/ Ampullary Cancer. He is only 40, and I'm scared and in shock like you. How are you doing? how is he?
My husband is scheduled for the WHipple Surgery next week..

SpideyCat
Posts: 1
Joined: Apr 2010

Your stories touched my heart so much, I wondered if you have any updates.....I'm new to this forum and can't work out how to send a private message or email.

My Husband has just been diagnosed with eye cancer too. We are still in shock, but feeling more positive now.

For the first few days I felt as though the Universe was 'wrong' somehow, this couldn't be happening, everything was out of kilter. I could do nothing but cry.

But I've spoken to a wonderful woman (a real life Angel) who had the same condition herself, and the same treatment that my Husband will be having (Proton Beam Radiotherapy) and that was 12 years ago, and she's till hear to tell the tale. She's so positive and encouraging, that it's given us real hope.....he's in the best possible hands and is going to be getting the best possible treatment, so he's going to be OK....he HAS to be....the alternative is too unthinkable. I absolutely know that I couldn't survive without him, and like Cyndi says, I wouldn't to.

Love and good health to you all......and please update if you can.

Spidey
XXX

astigen
Posts: 1
Joined: Feb 2011

Hi Luciana,

I found your post by accident today and I was struck by how similar our situations are (or rather mine is and yours was). My husband was diagnosed in September (2010) with choroidal melanoma, he was 32 at the time (he is now 33) and I was 28 at the time. My husband also had vision issues which prompted him to go to the doctor. His doctor sent him to a specialist right away and he was diagnosed the same day (unfortunately he didn't see his primary right away, it happened to be a month after first experiencing the symptoms). To say it was a shock is a gross underestimate; we were absolutely floored and paralyzed. Thankfully we are both very analytical people by nature (both scientists) so we were catapulted into action shortly after our initial shock. We didn't take the advice of the retinal specialist (to have plaque therapy) and started looking into all options. We ended up going with proton radiation (which I believe you said your husband had as well) in San Francisco, and luckily were able to get in fairly quickly. My husband was treated and his tumor genetic profile came back as Class 1. I know that there have been some studies that show that there is a fairly low risk of mets with Class 1 profiles, but those studies were also not done on a large sample size and the data isn't very old (i.e. can you reliably extrapolate out mets stats further than 8 years based on such a short time frame?).

So, I guess why I'm writing is to see how your situation is going and how it has been for you as the caregiver. My husband and I have been lucky I guess (although we are only 5 months into this) and he hasn't shown any signs of mets or other complications. But sometimes I'm paralyzed by the same fear as I initially had when I think about what will happen if he gets mets. I absolutely can't imagine my life without him (we've been together for almost 10 yrs now), he is perfect for me, it's hard to really get that across. I'm also wracked with guilt by the thought of what I will do if he gets mets, both financially and how I will manage emotionally. His insurance is great, but if something were to happen, we could not afford for me to leave my job or take a lot of time off. Have you had any similar feelings or situations arise?

My husband is on the ocular melanoma list-serv, so he reads daily emails about people who have this cancer and people who have loved ones who have this cancer. Sometimes those emails are torture though, especially when we hear about other class 1 patients that get mets (even though it is supposedly such a low risk).

Anyway, as somebody who has gone through this (as a spouse and a caregiver), I would love to hear some thoughts and to get an update on your and your husband's situation.

Take Care,
Angel

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