Ewe Mama Posted May 16, 2016 Share Posted May 16, 2016 No sooner do I get home from the hospital with Faith than I have to start mentally preparing for my dad's appt with the oncologist tomorrow, 2.5 hours away. Please help me formulate a list of questions pertinent to prostate cancer, Stage IV spread to lymph nodes and bone. I am just numb right now and can't think straight. PTL Ram Man can work from home tomorrow and stay with the kiddos. 1 Quote Link to comment Share on other sites More sharing options...
PinkyandtheBrains. Posted May 16, 2016 Share Posted May 16, 2016 Specific type of prostate cancer. Type of treatment. Other additional options. Expected Length of treatment Potential complications. Realistic prognosis should treatment progress as expected. Social services available to provide additional assistance. (This is huge, there are often a number of services that can make lifeuch easier. I'm going through similat with two parents currently) 5 Quote Link to comment Share on other sites More sharing options...
FaithManor Posted May 16, 2016 Share Posted May 16, 2016 I would also ask about supportive treatment once traditional treatment begins. Ie nutrition, stress management, exercise, vitamins/minerals, counseling, group therapy, whatever would be beneficial as adjuvants to the regular treatment plan. 2 Quote Link to comment Share on other sites More sharing options...
Farrar Posted May 16, 2016 Share Posted May 16, 2016 Ask for a consult with palliative care to happen early in treatment. No one understands pain management like palliative care teams, no one else will be as straight up truthful with you either. Because palliative care is associated with hospice and death care it's often overlooked or something families purposefully avoid, but anyone going into treatment for an advanced treatment is potentially going to experience a lot of pain. The palliative people can help anyone - even if the prognosis is good - navigate that. 10 Quote Link to comment Share on other sites More sharing options...
Ewe Mama Posted May 16, 2016 Author Share Posted May 16, 2016 These are great questions. Thank you for posting. Any more? 1 Quote Link to comment Share on other sites More sharing options...
Incognito Posted May 16, 2016 Share Posted May 16, 2016 We found it useful to ask questions about the practical side of things. What equipment might we need? What physical limitations should we expect 1)as treatment starts 2)long term. Also just having a bunch of change for the parking meters and something occupying but mindless to do in the waiting rooms is nice for those initial appointments. It really helped us to bring a notebook and write down everything the doctor says. It is hard to remember it all straight. 4 Quote Link to comment Share on other sites More sharing options...
Laurie4b Posted May 16, 2016 Share Posted May 16, 2016 You've already gotten many good questions. Here are a couple not yet posted (or at least I didn't see them.) You will probably get a whole notebook to answer your questions when you meet with the onc. It's helpful to have an idea of what effects are expected at what day of treatment. For instance, there might be nausea from days 1-3, white blood cells tank at day 9-12, etc. You definitely want to know if white cells are expected to drop off and when. Ask what precautions the doc wants you to take then. Some don't want you to eat any fresh fruits or veges (concerns about listeria, etc. when you don't have an immune system), no flowers in vases, etc. Cautions about being out and about. Exercise is usually good both for quality of life but often for a better prognosis. Ask what kind/level of exercise your dad should be doing. "Whatever he feels like" is not the answer you want because in chemo people usually don't "feel like" any, but can do it and it's good for them. Ask about supplements, vitamins, minerals, foods to avoid during chemo. A lot of people think taking extra vitamins, etc. will help defeat the cancer, but because cancer cells are growing so fast, their uptake of nutrients is higher than the healthy cells and they will get more than their share. The vitamins, etc. can then protect the cells from chemo, radiation, etc. So nothing---not even a vitamin pill--without the onc's approval. Ask the doc's opinion about fasting before chemo and the first day or so. (Google it to get a better idea. This wasn't a thing when I had chemo, but it makes good sense to me for 2 reasons: 1) Fasting prompts healthy cells to clean up and regenerate so helps them withstand the chemo. 2) Cancer cells are growing so darned fast that they can't survive as well with no nutrients. They are doing some trials now on this. As I said, you could google it, but I would probably do it myself. They should tell you when to call the doctor and you should basically have 24 hour access to a health professional. Make sure you have all the numbers. Make sure your dad has you down on his HIPPA and any other family member who may need to call and get info. If dad is having crazy diarrhea and vomiting (hopefully not) and cannot call, you WANT a family member to be able to call and get information and not make dad come to the phone. 2 Quote Link to comment Share on other sites More sharing options...
fairfarmhand Posted May 16, 2016 Share Posted May 16, 2016 You may want to discuss with the doctor the different Living Will options. On another note, You need to have the Powers of Attorney (medical and financial) in order ASAP. This is not always necessarily the spouse; spouses may acknowledge that they are too overwrought to do this, but it should be someone who can listen well to the doctors and analyze good choices, without dilly dallying. Not in a rush, but without agonizing over it either. 5 Quote Link to comment Share on other sites More sharing options...
Lanny Posted May 17, 2016 Share Posted May 17, 2016 I believe a good question, for any M.D. Specialty, is to ask, if they or someone in their family were the patient, with this problem, how would they treat it. The question needs to be phrased a little differently, depending on the sex of the M.D. and the sex of the patient. 3 Quote Link to comment Share on other sites More sharing options...
Rachel Posted May 17, 2016 Share Posted May 17, 2016 If you can, either take a friend to write for you or record what the oncologist says. You may be able to do that on your phone. I'm sorry you are going through this! 2 Quote Link to comment Share on other sites More sharing options...
umsami Posted May 17, 2016 Share Posted May 17, 2016 Is your Dad going to an oncologist associated with a university hospital? If there is one near by, it may be worth it. Often they are more aware of cutting edge treatment, studies, etc. A good friend's husband had stage IV prostate cancer... underwent surgery, hormones, radiation.....still couldn't get PSA to zero. Ended up flying to MD Anderson every 3 or 6 weeks (can't remember which) for a clinical trial and finally everything came down to zero. Ask if there are support groups both for prostate cancer patients as well as family members (usually separate). 3 Quote Link to comment Share on other sites More sharing options...
nevergiveup Posted May 17, 2016 Share Posted May 17, 2016 Ask if there are any research studies or trials he might qualify for. Ask about immunotherapy. 1 Quote Link to comment Share on other sites More sharing options...
Ewe Mama Posted May 18, 2016 Author Share Posted May 18, 2016 Update: Thank you all for your help with the questions. We liked the doctor very much. He didn't pull any punches. The news is not good. He will be on hormone injections the rest of his life and they will do only six rounds of chemo total, providing he tolerates the treatment reasonably well. This is all to prolong his life as, barring a miracle, there is no chance of remission. The doctor told us that he would expect a healthy 50 year old man with the same progression to live only 7-9 months. My dad is in his late 60's and is not in very good health, so we were told to get his affairs in order. Pain management is of primary concern. Chemo will start in three weeks. :( Quote Link to comment Share on other sites More sharing options...
Pawz4me Posted May 18, 2016 Share Posted May 18, 2016 :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
PinkyandtheBrains. Posted May 18, 2016 Share Posted May 18, 2016 Update: Thank you all for your help with the questions. We liked the doctor very much. He didn't pull any punches. The news is not good. He will be on hormone injections the rest of his life and they will do only six rounds of chemo total, providing he tolerates the treatment reasonably well. This is all to prolong his life as, barring a miracle, there is no chance of remission. The doctor told us that he would expect a healthy 50 year old man with the same progression to live only 7-9 months. My dad is in his late 60's and is not in very good health, so we were told to get his affairs in order. Pain management is of primary concern. Chemo will start in three weeks. :( Sending you <hugs>, I'm sorry you are going through this. 1 Quote Link to comment Share on other sites More sharing options...
Garga Posted May 18, 2016 Share Posted May 18, 2016 Update: Thank you all for your help with the questions. We liked the doctor very much. He didn't pull any punches. The news is not good. He will be on hormone injections the rest of his life and they will do only six rounds of chemo total, providing he tolerates the treatment reasonably well. This is all to prolong his life as, barring a miracle, there is no chance of remission. The doctor told us that he would expect a healthy 50 year old man with the same progression to live only 7-9 months. My dad is in his late 60's and is not in very good health, so we were told to get his affairs in order. Pain management is of primary concern. Chemo will start in three weeks. :( Oh, I'm so sorry to hear that news. That's so sad. 1 Quote Link to comment Share on other sites More sharing options...
Garga Posted May 18, 2016 Share Posted May 18, 2016 Have you read the book Being Mortal? It discusses choosing options to help a person's last days/months be with dignity and as little pain as possible. Other posters mentioned pallative care--that's the sort of thing it talks about. It talks about how doctors may keep throwing treatments at someone because the treatments exist and doctors want to try to help, but that sometimes you have to go to the hospice people first as they know ways to keep a person from being miserable through the the treatments. The pallative/hospice people can help a long time before the end, so don't think you have to wait to call those guys during only the last week of life. They have resources/knowledge the doctors don't have. The doctors know about cures and treatments and the hospice people know about day-to-day care and support. 1 Quote Link to comment Share on other sites More sharing options...
Rachel Posted May 18, 2016 Share Posted May 18, 2016 I'm very sorry. 1 Quote Link to comment Share on other sites More sharing options...
East Coast Sue Posted May 19, 2016 Share Posted May 19, 2016 Hugs. I'm sorry for the prognosis but glad that you can be there to support your dad. 1 Quote Link to comment Share on other sites More sharing options...
Incognito Posted May 19, 2016 Share Posted May 19, 2016 I'm so sorry. :( 1 Quote Link to comment Share on other sites More sharing options...
SarahB82 Posted May 19, 2016 Share Posted May 19, 2016 I am so sorry there wasnt' better news. 1 Quote Link to comment Share on other sites More sharing options...
MrsBasil Posted May 19, 2016 Share Posted May 19, 2016 I'm so sorry. :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
umsami Posted May 19, 2016 Share Posted May 19, 2016 :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Ewe Mama Posted May 19, 2016 Author Share Posted May 19, 2016 Have you read the book Being Mortal? It discusses choosing options to help a person's last days/months be with dignity and as little pain as possible. Other posters mentioned pallative care--that's the sort of thing it talks about. It talks about how doctors may keep throwing treatments at someone because the treatments exist and doctors want to try to help, but that sometimes you have to go to the hospice people first as they know ways to keep a person from being miserable through the the treatments. The pallative/hospice people can help a long time before the end, so don't think you have to wait to call those guys during only the last week of life. They have resources/knowledge the doctors don't have. The doctors know about cures and treatments and the hospice people know about day-to-day care and support. Thank you for the book title. I will order this today. Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted May 19, 2016 Share Posted May 19, 2016 Have you thought about hospice? Many hospices will cover all of the medications, and many are non-profit and do not charge families at all outside of what insurance chooses to cover. Palliative radiation is usually an option in hospice. The variety of services offered, and the fact that care comes to you really eases a number of things. We really, really appreciated that we went to hospice early with our dd's care. Most hospices comes with a care team--nurse, overseeing doctor, social worker, chaplain/grief support, etc. 1 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.