Do you think that oncologists prepare their patients for survivorship, and did your oncologist do a careplan for survival for you?

I was diagnosed 23 years ago the first time and couldn't have told you what drugs I had except for the acroynyms. Unfortunately, despite the survivor community repeatedly providing research and talking about the importance of the survivorship care plan, few oncologists do so today. If your oncologist provided you a care plan we would love to honor him or her so tell us who it was.

For those of you on the CURE mailing list look for the first CURE Survivorship guide at the end of this month. We are proud of this product and hope you will like it. It lays out what the survivorship care plan looks like and how to get yours.

Kathy LaTour

My oncologist at the onset looked me directly in the eyes and said very firmly,
'I WANT YOU TO GET WELL'. At that moment I believed him, and I did everything he
asked. He is in touch with the whole body and every visit, the nurse administered the drugs, but he also spoke with me. He has helped me in so many ways. Very responsive to my needs.

I think some type of survivor plan is long overdue, as a matter of fact I couldnt believe that no one knew what to tell me after my radical laproscopic nephrectomy with hand assist. I thought the fear I had when I was told I had cancer, normal. I thought the way I was told was not normal...as the E room doctor just ran in and said you have a large cancerous tumor on your kidney and it will have to be removed. Then as quick as he came in he ran out. I ran after him and he said check with your primary.

Well, I have checked with my primary, my secondary, my gastrointerolgist, my uroligist, my oncologist, my nephrologist, and my dietician/nutritionist, and no one has a clear plan on what I should be doing, taking, thinking, and anything else, to keep me from either losing my only kidney left, and to keep from acquiring some new dread cancer type.

So, I read all I can, search all the many cancer sites ( some great information to be found for sure) and I have the CURE magazine, which has very clear and informative information. All of these things help to ease my anxiety, but...I would be more content had I a precise plan to follow. A do this and do that type thing that you know you are doing all you can do. Whereas now I am not so sure all that can be done IS being done.

I look forward to viewing the plan that has been mentioned, I hope it comes out soon, and I believe it will be a great relief to many survivors, and add another layer of hope to our existence.

Regards,
Robert "Apple" Piombino
cancer Survivor

This topic still leaves me full of rage.

Being very educated and skilled at research [frequently being paid to do so], I made my own care plan. I spent many, many hours researching each chemo drug and their late and long term effects. I prepared this plan before sample plans or outlines were available and used my experience with social service official reports to prepare an official looking document. I made certain it was clear and easily readable. NO DOCTOR HAS TAKEN THE TIME TO READ IT. They glance at it and hand it back to me.

During my ongoing survivor struggle to develop as much health and functioning power as possible, I have battled numerous long term effects that needed follow-up. I re-read the care plan, explained the information to the doc and still found that information ignored. Occasionally, it wasn't ignored. Instead, it was dissected and dismissed as not accurate or valid.

On this topic, I'd like to mention the emphasis upon supplying emotional and psychological assistance to the cancer survivor. I do admit the need for this, however...

I think the cancer survivor would be better served by addressing the inadequacies in the medical profession. As long as there is any leeway for a physician to dismiss a troublesome patient as 'emotional', that physician has an excuse to justify their lack of attention to the issues at hand.

Laura Coleman, Ph.D.
Cancer Survivor

I completely agree with the survivor care plan situation. As with you, my doctor seems to dismiss any type of additional care that I present to him. Like you I also research and try very hard to develop my on care plan which includes the positive attitude, nutrition, acupuncture, journaling and learning all I can about the drugs being given me. I feel I saved my life by being aware of the KRAS gene and its importance in what drugs are given for colon cancer. My doctor was all prepared to start me on Erbitux which is completely in-effective if you have a mutated KRAS gene. I insisted on the test before starting the treatment and guess what? I had a mutated KRAS gene. This should be mandatory for all diagnosed with colon cancer but apparently it is not. We do need care plans and doctors to be aware of them as the are an integral part of the plan. I am battling colon cancer mets to the lung and liver and am determined to win this war.
Elizabeth Foster
Apple Valley, CA

I would like to reply to Laura Coleman's post... I believe my mother is correct when she said to me that no one cares at work about your cancer. People ask how are ya doing, but barely maintain eye contact for a sentence or two, then rush away to other conversations or duties. I even had a supervisor say to me "forget about that cancer stuff," when I mentioned that I didnt feel strong enough to do some job.

I would like to have some care and concern shown my way by "all" the medical professionals that I am expossed too. Unfortunately I believe besides ones immediate family members, this will not be the norm. To further "illuminate" this conjecture on my part, I relate the following incident during a CT scan at my local hospital...I was told by a medical technician outside the CT room, in the hospital hallway...do not use the word cancer in this hospital, as it scares the patients. I didnt know if I should laugh at the ridiculous statement or offer some type of an argument against the stupidity of her statement.

So I have come to sadly accept the apathy, and hope for the best, and expect the coldness and isolation, that is so easily proffered, as just plain bussiness as usual. I however, will continue to stop whenever I see another soul in pain, and ask them how they are and offer some limited support as possible. I just find it incredulous that so much pain and needless suffering exists in our world, and there are humans that couldnt care any less.

Sorry for the negativity, and the mispellings, but God bless and enjoy each day you are able.
Robert "Apple" Piombino
cancer Survivor

In reply to ebeth48,
How inspiring and truly how lucky you are to have the foresight, the sensibility, and the capability to seek out, find, and apply that knowledge to help you in this battle. I will keep you in my prayers, and I know you are strong and filled with the right spirits to edure and find your joys where ever you look.

God bless us everyone
Robert "Apple" Piombino
cancer Survivor

I recently went to see my Oncologist and he wanted me to have a bone density test. I went to my Internal Med Doctor and asked her for a referal to get this done thru my HMO. I am 50 and she told me that I was not entitled to have one until I am 60. My Oncologist put my diagnosis as Cervical Cancer. My Internal Med Dr told me that since I am no longer with cancer that I could not have that as my diagnosis. I went back to my Oncologist and he told me that will always be my diagnosis for the rest of my life. He was angry that my Internal Med Dr. dismissed it as if what I have been thru did not matter any more. My cancer was Cervical but not picked up on a pap test as the tumor was on the inside top of the cervix and went out to lymphnodes on both sides. I was given a 30% chance of survival and have been cancer free for 9 years. I still to this day hurt and have many residuals from my treatments.

My doctors definitely did not give adequate preparation with a survivors plan. Last year, after my third regimen of chemo for metastatic colon cancer, I said to my doc, "OK, now that we are going to watchful waiting for awhile, what can I do to boost my immune system (supplements, complementary treatments, etc.)." His response was that they don't really do anything along the lines of boosting the immune system. My primary care doc has on several occasions tried to engage my oncologist in a team approach to my care but did not receive much response. I am again on chemo and still trying to encourage my oncologist to use ALL the tools in our toolbox rather than just the chemo. The hospital where I receive treatments is building a nice new cancer center and then a cancer hospital. My oncologist told me that they hope to incorporate more complementary treatments when the new center opens - not they WILL but they hope. On my last visit, I took the doc a copy of "Life Over Cancer", which was recommended by a colon cancer blog, and told the doc that this is what his patients are reading; that if he does not fill in the blanks for us for a plan and complementary treatments, then we fill in our own blanks; and that we (his patients) cannot wait for two years for the new center to open in the hope that they MIGHT incorporate more than just chemo into our survivor plan - we need help now. At least he committed to reading the book, which is a step forward. It is so frustrating that ideas of a survivor plan and integrative care should be so foreign to medical community in this day and age.