Prostate cancer giver: Hi all, My... - Prostate Cancer C...

Prostate Cancer Caregivers

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Prostate cancer giver

Alexandria135 profile image
Alexandria135

Hi all,

My husband has been diagnosed in March 2018 with stage 4 prostate cancer which has metastasized to his bones.

My co-worker suggested I join this group as support for myself.

Thank you,

Alexander135

11 Replies

Hi Alexander,

I'm sorry that your husband was diagnosed with cancer but I'm glad that you decided to join the group. You are not alone🙏💛

Hello Alexandria135. Welcome to the support group. I want to say take good care of your self, so you can be supportive.

It’s a difficult path, but together and with the support of others, it becomes a little easier.

In the most common phrase of this group, “Know you are not alone.”

Cheers!

Hugs and prayers for you and your husband. There are a lot of good treatments for prostate cancer. .even stage 4. (My husband also has stage 4 but his is an aggressive cancer - neuroendocrine or small cell prostate cancer) Find a good oncologist who specializes in prostate cancer. If you husband is open to it a good integrative doctor might help.

One thing that has helped my husband is his CPAP.. after many years of snoring he finally got a sleep study done and now gets quality sleep. My sweetie also really started eating healthy(with a lot of encouragement from me) The healthy diet really helped his blood pressure and other problems and I think it helps his immune system fight things better.

Softwaremom

Curious -- why did your co-worker suggest it?

this caregiver group is an off-shoot of the main prostate cancer support group to help us address the challenges we face with partners who are struggling with this particular disease and its particular "side effects" on caregivers.

Also note -- you'll see a lot of us are not really "support group" types -- but we kind of like this online version.

Hope all is good now, but we're here when you need it!!

The first few months are pretty scary. Here are some tips I like to share:

- Get a nice notebook, sturdy one that you like looking at (whatever, but if the book makes you feel a little good with a nice picture or texture, why not!)

- Take notes of every doctor visit, notate dates of scans, etc. Also can use it to write questions before doctor visits to make sure you remember everything. This has been invaluable for us. We also track his basic vitals and PSA so we can easily follow weight and PSA in particular.

- Ask questions. If you don't feel comfortable asking your oncologist, switch to someone who makes you feel heard and comfortable and like you are getting enough info.

- Get a second opinion. We use an expert at UCSF (we live in Hawai`i). The best visit we had in the first six months was seeing Eric Small at UCSF. He came in with a full assessment of what we were dealing with (Stage IV, advanced and aggressive) and the options we had and his recommendations. Husband did early chemo (and then a bunch of other stuff) -- 4+ years out he's doing well. Any regular oncologist (who sees all kinds of cancers) should be happy to have a prostate expert on board.

- Do some research and try (haha) not to get overwhelmed.

One day at a time takes on a whole new meaning.

Best wishes getting on top of this thing!

- Brenda

Alexandria, I am sorry to hear about your husband. I am a medical oncologist in Omaha. I specialized in prostate cancer at Memorial Sloan Kettering and 14 yrs ago moved home to Omaha. I founded the Urology Cancer Center in 2010 and only see prostate kidney and bladder cancers. I see around 350 prostate cancer patients monthly from over 35 states and several countries . We have over 50 clinical trials open and have had several first in world treatments at our center. More importantly though I have lost family members to various cancers and have a passion to help other with cancer especially through education. Thats my calling. Feel free to reach out to me for advice on ur husbands case. Im not looking for anything in return just trying to help others fight this battle. I to am new to this page. A new patient from LA a couple of weeks ago told me of it. Don’t hesitate to reach out.

dadeb profile image
dadeb in reply to Drgucancer

You sound like a wonderful, caring Doctor. I hope you post often with your experience and insight.

Hi alexander,

I'm so sorry for your husband, don't worry God is great and will help all of you, don't be shy to ask anything in this group, we are here to help.

best wishes.

Hello! I have been living with this tension for 4 years now. I love the inbetween times of stability and hate the pre testing days. Day by Day.

Alexandria, my husband was diagonsed in 2016 with a T1 prostate cancer and now April 2018 with T4 with bone mets. 6 cycles of Docetaxel did nothing. Now on a new chemo. This is an emotional roller coaster of note. I also hide my tears from him. I am encouraging him every day. Some days I drive him crazy by asking what he wants to eat when he actually does not want to eat. Faith plays a huge role and we certainly live day by day. Each chemo so far has been different. You just have to be strong and if you need a day off for yourself to go do your hair / nails or shopping, just give yourself that "day off". I am sure your husband won't mind. After chemo I stay at home but as soon as he feels better I give myself a day off just to clear my head. When he gets grumpy and fights with me I just say OK and walk away. I did not understand it when people told me to look after myself too because his health is the main focus but if we become weak or sick, what then ? Blessings to you and all the other patients and caregivers here. We are not alone !

Lyubov profile image
Lyubov in reply to Ldb01

Thanks for your comment: "When he gets grumpy and fights with me I just say OK and walk away"! It's just what I need and will try to do instead of trying to calm him down. That just seems to make him angrier and more frustrated.

Hugs, Lyubov

Welcome. I am new here too.

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