Palliative Care: What is it? How do I get it?

I found the lack of any emotional support from our medical people during my breast cancer journey very disappointing. However, that's how I found the Mayo site and it's been a real blessing and help. To finally find someone who acknowledges that having cancer and now being a cancer caregiver is difficult and challenging has been uplifting. I tend to both act and be strong but underneath that is great fear and sadness that I'm sure is universal. When you act like you have it 'all together' doctors tend to think you do and don't offer much hand holding. As my husband and I face his cancer we have found that our world view on illness and death are somewhat different. I think it's important that my husband has the chance to talk to a counselor without me and then for me to talk with the counselor without the interference/noise of years of married life, I hope I can see my husband's point of view better and be better able to help him face this diagnosis. I'm a fix it, get it done, do whatever it takes kind of person with illness and he's a quality of life guy who is much more accepting of death........this will help us work this out and I think we won't feel so alone and abandoned. My husband's difficult diagnosis of Cancer of Unknown Primary (which persists after 18 months) has been a whole new kind of stress.

@cindylb- I also found the lack of emotional support very disappointing. But my husband askekd me, do you want a friend or surgeon? What a good point! Surgeons and radiologists seem to be very straightforward, dealing with precision and numbers. I do remind my radiologist, who I adore, that I am a person and he has to look at that too. He always says "Numbers don't lie" or some such nonsense. I tend to make my doctors my friends, at least my lung team.
Your husband is very lucky to have a wife as willing to help and compromise during this difficult journey. It's so important to know what kind of a person you are helping too- I take care of things immediately too, but I tend to trip over my other emotional self.
However having stage 4 lung cancer myself I also want a good quality of life. I am petrified myself of accepting my own death. I'm also thinking about looking into counseling about this through my oncologist's office.
I love, love, love the expression, "noise of married life and life itself!" I'm going to steal this term!
I am so glad that you have spoken freely as you an here. I hope that others will see the value of searching out such a person. Has your husband benefited from the counseling too?

@merpreb -To answer your questions, my scan last week was all stable! I am thrilled as this shows that the Tecentriq that I started months ago is working although many had doubts switching from 3 1/2 years of Opdivo to another immunotherapy would help. I do have a Rhuematologist appt coming up in 2 weeks to see if all my pain is from one of the "itis" family. Inflammation is my worst complaint along with extremely tight muscles. Just went through a few days of prepping for this Hurricane, which will be on our coast in a few hours. Now I can actually have a day off.
BTW, I never had problems with Mayo for trials.....they had no trials back in 2014. I went to Tampa, Florida to Moffitt for the trials that I flunked out of!
Even after my husband died at Mayo, there was no offerings of any type of service. I have to be my own advocate on everything. I only see the oncologist once every 3 months for 15 minutes. They are understaffed and have grown to so much in the 5 years I have been going there.
Hopefully I will still have power at my house tomorrow morning to take a shower....have my labs and infusion at 8:45!!

@seaspray- Oh no, you were in Dorian's path? Do you have anyone down there that can check?
Hip hip hooray! Such excellent news about Tecentriq. What is your status now?
I have never tried to get into any trials as SBRT has worked beautifully for me. Also my oncologist thinks that for me, any infusions would make my quality of life pretty miserable without knowing if it will do anything. My doctors have given me 22+ years so far so I'm not arguing!
Good idea seeing rheumatologist. They have so many extra blood tests that they can do to limit the focus and see what they can find.
Let me know about your home, will you?

@ seaspray Hope the hurricane leaves you alone. We never lost power here in Ormond Beach.....flickered a few times. Mayo does now have clinical trials at least in the triple negative breast cancer area. I also went to Moffitt for a clinical trial for the breast cancer, which I also flunked out of. They had a trial of the same drug at Mayo but it didn’t start as soon as Moffitt's did and my oncologist was afraid I wouldn’t qualify at Mayo time wise as they didn’t have a start date yet and there was a time limit on how long it could be after your chemo ended. Now that it's back in my lungs, there is another trial at Mayo that I may qualify for depending on my Foundation One and PD-L1 test results.

My current most important cancer is hopefully a single lesion that may be a recurrence (I find out next week) and the option being considered may be adequate. There may indeed be options my docs think I will turn down because I have done so before with quality of life at my age being the most important consideration. I am being helped by the counseling and most by participation in a support group at the Cancer Support Community. More help is always appreciated. I suspect it will need to be spiritual. I have thought of joining a zen community but am pretty sure I lack the necessary discipline. I still try to participate as I can in the rescue and rehab on protected wildlife and in being in nature. And enjoy when I can socializing with amateur cosmologists who see in nature no purpose but great beauty.

@cwm1 - So far the hurricane has been uneventful...torrential rains and wind gusts but thankfully no flooding as of now, which is high tide. Yes, Mayo does have quite a few trials going on as my oncologist is leading the lung one. That is why I no longer get to see her but once every 3 months. I was offered to try for that when I showed progression back in April but I believe it was a chemo/immunotherapy combo which I do not want to do until I exhaust all other options. Had Gamma Knife radiation end of May so the brain lesions are gone. Just watching the new adrenal gland lesion and hilar node as well as a new one in my thyroid gland. I may decide to radiate those as well although my oncologist does not think I should at this time as I have no pain with them.

Hi @seaspray, I encourage to ask your oncologist about palliative care at Mayo Clinic. It is available at all Mayo campuses. In this archived Video Q&A Dr. Maisha Robinson shares information on palliative care at Mayo Clinic in Florida and answers questions.

- Video Q&A about Palliative Care https://connect.mayoclinic.org/webinar/discussion-on-palliative-care/

Compared to surgery, radiation and chemotherapy, it is a relatively new treatment line. Sometimes it doesn't get introduced to the patient or the patient and family may not hear that it has been offered. Like many people in this discussion, clinicians and patients alike continue to equate palliative care with hospice or end of life care. It is more than that. Like @merpreb said "Palliative care is all care, from the beginning of your illness to it's end." Palliative care focuses on LIVING with xxx (cancer, heart disease, ALS or whatever condition). It's about living with reality of disease (the road) and putting the steering wheel in your hands.

I wonder how many of you in this discussion have asked about palliative care vs. being told about it. Did you inquire about palliative care?

@colleenyoung- Thank you for additional information on Palliative Care.
I have also found more info : https://www.ajmc.com/journals/evidence-based-oncology/2016/december-2016/asco-guideline-upgrade-integrates-palliative-care-in-standard-oncology-care
How do I get palliative care if it is not offered tome: https://www.webmd.com/palliative-care/how-to-find-palliative-care
The difference between palliative care and hospice:
The Difference Between Palliative Care and Hospice
Both palliative care and hospice care provide comfort. But palliative care can begin at diagnosis, and at the same time as treatment. Hospice care begins after treatment of the disease is stopped and when it is clear that the person is not going to survive the illness.

Hi @colleenyoung, Thank you for the info. I am now aware Mayo does have it but has never been discussed. I don't see a doctor for 3 months, just a nurse who might be able to point me in the right direction. My mayo has no support groups for lung cancer and I don't need drugs so not sure what else they might offer. As I had my treatment yesterday, I will ask the nurse in 3 weeks when I go back.