I'm a Stage 4 cancer patient-AMA

[Anonymous]

Usually, I'm not a huge fan of these AMA threads, but as I made my way through diagnosis and into chemotherapy, I had a lot of questions of what it was like to live with cancer and undergo treatment and had nowhere to ask those questions.

So, I'm starting this thread for anyone who wants to know what it's like to live with cancer and its treatment in hopes it might be helpful to anyone else facing it themselves or living it as a caregiver.

Obviously, no medical advice here. Just regular quality of life type info.

Hope it helps even one person with even one small question they can't ask anywhere else.

[Anonymous]

What is the one thing that surprised you the most--the thing you felt most unprepared for?

[Anonymous]

Anonymous wrote:Usually, I'm not a huge fan of these AMA threads, but as I made my way through diagnosis and into chemotherapy, I had a lot of questions of what it was like to live with cancer and undergo treatment and had nowhere to ask those questions.

So, I'm starting this thread for anyone who wants to know what it's like to live with cancer and its treatment in hopes it might be helpful to anyone else facing it themselves or living it as a caregiver.

Obviously, no medical advice here. Just regular quality of life type info.

Hope it helps even one person with even one small question they can't ask anywhere else.

I'm really sorry u r dealing with this. Wishing u strength and to beat the stupid cancer! Hugs

[Anonymous]

How honest have your doctors been with you? There is nothing worse than finding out from Google that there was important information that I wasn't told.

[Anonymous]

Do you wish you could have done something before knowing you had cancer? Do you regret anything you've done? Do you have a bucket list and do you mind sharing what's on it?

[Anonymous]

What advice would you give to someone who has a loved one with late stage cancer, or has a friend whose loved one has late stage cancer? What to say/not to say, and what to do/not to do?

I'm so sorry you're dealing with this. My best wishes to you.

[Anonymous]

Anonymous wrote:What is the one thing that surprised you the most--the thing you felt most unprepared for?

This is a great question. I think the thing that surprised me the most at diagnosis was finding out my cancer could be so advanced with relatively few symptoms. I was active, had a healthy lifestyle and was generally feeling well enough that I had not seen a doctor in several years (I'm only 40). I finally went for a regular checkup and some screenings and found out I was very sick. I suppose the lesson there is I should have kept up with regular checkups. I thought I should only see a doctor when very sick with something that didn't clear up in a few days on its own. Maybe if I had regular checkups, they would have found my cancer earlier. I don't know. But what I do know, now, is that you can feel pretty fine and still be very sick.

I'm not trying to scare anyone or suggest people should run to the doctor with every sneeze...I'm more suggesting that everyone think of their health care as a maintenance thing, not just something to attend to when you feel sick.

(Thank you to the next PP for the good wishes and hugs. I really do appreciate all good mojo, even from the anonymous internets. )

[Anonymous]

I am also wishing you and your family the best.

What have been the most helpful things your friends and family have done for you throughout your treatment?

[Anonymous]

I have known 2 people recently who were fine...until they weren't.

We're going to lose my FIL this way. One day he just starting having numbness in his legs and difficulty walking. Bam - stage 4 cancer with less than a year.

I really hope there is a better prognosis for you, but I really just have nothing but sympathy and good wishes.

[Anonymous]

Anonymous wrote:

Anonymous wrote:What is the one thing that surprised you the most--the thing you felt most unprepared for?

This is a great question. I think the thing that surprised me the most at diagnosis was finding out my cancer could be so advanced with relatively few symptoms. I was active, had a healthy lifestyle and was generally feeling well enough that I had not seen a doctor in several years (I'm only 40). I finally went for a regular checkup and some screenings and found out I was very sick. I suppose the lesson there is I should have kept up with regular checkups. I thought I should only see a doctor when very sick with something that didn't clear up in a few days on its own. Maybe if I had regular checkups, they would have found my cancer earlier. I don't know. But what I do know, now, is that you can feel pretty fine and still be very sick.

I'm not trying to scare anyone or suggest people should run to the doctor with every sneeze...I'm more suggesting that everyone think of their health care as a maintenance thing, not just something to attend to when you feel sick.

(Thank you to the next PP for the good wishes and hugs. I really do appreciate all good mojo, even from the anonymous internets. )

What did the dr find during a regular checkup that alarmed his/her to do follow up tests ultimately leading to your diagnosis? Wishing you lots of luck during your treatment!

[Anonymous]

What type of cancer?
Were you diagnosed at stage 4?
Married? Kids? Ages of kids?
Family history?

Best wishes to you.

[Anonymous]

Anonymous wrote:How honest have your doctors been with you? There is nothing worse than finding out from Google that there was important information that I wasn't told.

To be honest, I have chosen to stay away from Google. In the beginning, I googled everything and it only increased my anxiety a thousand fold. Now, I only google new meds I'm prescribed and I take my questions and concerns to my oncologist and nurse (usually a chemo patient is assigned one nurse during treatment and I'm often most comfortable asking her questions first. She either gets me answers or recommends when I should talk to my onc. Chemo nurses are worth their weight in gold.)

As for the honesty of my doctors, I have felt very comfortable with their candor about treatment and my upcoming surgery. I did go for a second opinion and it was consistent with my initial team so I believe they are being upfront for the most part. The only reservation I have is in regards to prognosis. I have found doctors are not comfortable discussing prognosis very specifically and want you to focus on treatment. This is a little disappointing because I know my prognosis isn't great and I often wish they would talk more with me about what kind of time I have left and what life will be like in that time. I can't really blame them for avoiding such discussion. They want us to be strong and committed to treatment and depression about outcomes can be devastating to treatment. Still, this is the one thing I feel I can't talk about them and while I don't think they are being dishonest, I sometimes feel dodged on this issue.

[Anonymous]

Sorry you are going through this!

It sounds like a recurrence, what tests did you have done during your screening?

[Anonymous]

Anonymous wrote:

Anonymous wrote:What is the one thing that surprised you the most--the thing you felt most unprepared for?

This is a great question. I think the thing that surprised me the most at diagnosis was finding out my cancer could be so advanced with relatively few symptoms. I was active, had a healthy lifestyle and was generally feeling well enough that I had not seen a doctor in several years (I'm only 40). I finally went for a regular checkup and some screenings and found out I was very sick. I suppose the lesson there is I should have kept up with regular checkups. I thought I should only see a doctor when very sick with something that didn't clear up in a few days on its own. Maybe if I had regular checkups, they would have found my cancer earlier. I don't know. But what I do know, now, is that you can feel pretty fine and still be very sick.

I'm not trying to scare anyone or suggest people should run to the doctor with every sneeze...I'm more suggesting that everyone think of their health care as a maintenance thing, not just something to attend to when you feel sick.

(Thank you to the next PP for the good wishes and hugs. I really do appreciate all good mojo, even from the anonymous internets. )

Thanks for answering my question. I'm 48 and only see the doctor when I'm really sick. You've inspired me to make an appointment for a check-up this week. I wish you strength and hope in your journey. Sending positive thoughts your way OP.

[Anonymous]

Did you just find out? Or have you known about it for awhile?

I'm also really sorry you are facing this. Both my parents were diagnosed with cancer at the same time. I wish you the best with everything.