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As a cancer survivor, you will be talking with your doctor on a regular basis. It is important that your needs are being met. At times, it can be difficult to stay focused during the visit with the doctor. However, good communication will help improve your care experience and lessen your worries and fears along the way.
Here are a few thoughts on how to improve communication with your doctor:
"Teamwork: The Cancer Patient's Guide to Talking with Your Doctor" is a great resource available from the National Coalition for Cancer Survivorship (www.canceradvocacy.org).
Taking an active role in your care will help you learn more and feel more in control of what is happening to you. What has been your experience?
Sheryl M. Ness, R.N.
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Erin, I am so sorry that your experience has been so difficult. It's true that sometimes when cancer returns, we do our best to understand the full picture, but it is not simple. Biopsies, scans as well as other tests help the experts understand the situation, but are not always perfect. Above all, communication is key. It sounds like you asked good questions to get clarification and have done well to understand the situatiion as best you can. Keep asking for what you need and be open and honest about your frustrations with the mixed messages you are being given.
i am currently a patientat Mayo and I know they stress the team aproach with the Dr.s and the treatment of a patient. This is what the Mayo brothers created right?
Then why when I was in for a surgical biopsie did I two different answers from my surgeon and my oncologist. Can you imagine the rollercoast of emotions my husband ad I went thru when the surgeon approached me as I was reurning from x-ray and flat out told me the cancer was back and I was dying. This is after an intern told me one of the biopsies came back clean. We waited to check ouonly to be called by the surgeon and the 2nd biopsie was clean but there was cancer all around it. He knows he saw cancer.
4 weeks later I go back, no biopsies only a CT and my oncologist says the cancer has indeed recurred. The surgeon asst shows us the lung slice and the cancer lining the only healthy part of my lungs I have left. When I have to call my oncologist with a concern I mention the cancer and he says they are not sure of any cancer in my lungs.
WHAT THE?????????/ forget they keep my primary care out of the loop, they can't agree or rember who said what!!!
the anger and frustration is palpable
I have had someone with me each time
My oncologist now says I have a "year or so".f this was any where but Mayo you wouldprobably tell me to get the heck out of there. So what is your advice?
I agree that sometimes it's difficult to communicate our concerns clearly with the doctors, especially when our treatments involve oncologist, surgeon and family doctor. I had mastectomy followed by chemo therapy in 2009 and then on tamoxifen since. The oncologist wants to put me on aromatase inhibitors drug. I heard so many bad side effects about this new drug. Is it really better for hormonal treatment? And in order to switch, I need to be off tamoxifen for over 1 month to take blood test to confirm menopause status. Is it safe to be off tamoxifen for so long?
This post is for Cecilia. Pain after surgery is common and can be persistent. At times, effects from radiation can include development of scar tissue which can cause pain as well. A few ideas you can try...ask for a referral to have your pain evaluated specifically, such as a pain clinic consultation. With direction from your primary care doctor or oncologist, also look into additional ways to address the pain, such as acupressure or acupuncture, stress and relaxation techniques, etc.
I had kidney cancer four years ago. My experience is this:. In that time frame I could see there was lack of communication with the Urology Doctor's, my primary Doctor. When I told my primary MD what the Urology Md stated he was unaware of the comments from Urology. I had to tell him what the comments were and he seem baffled by those comments. I told him to read the medical notes and he seemed to be not in agreement with Urology. In other words like a prior comment stated one has to be aware of what is going on with their medical issues. I felt at times I was the one doing all the work.
Sorry, for the sentence with "jargon" fingere got in wrong position. That sentende chould read because it is dispensed from the pharmacy.
Commmunication is a key word in this journey.
an example happened to me a few days ago. Saw my primary doctor and he prescribed a new medicine for a different condition.
when I took it to the pharmacy I was told that I should talk with my oncologist before getting it filled. He also told me that my two doctors needed to communcate with each other. However,the problem was as he explained is that my primary doctor was not aware of what I was receiving at the cancer unit and also what I was receiving from the oncologist was not on the pharmacy profile because I do not get it from the pharmacy.Yjos os becaise ot os dos[ersed frpm the cancer unit. Sounds confusing and, yes, I made many phone calls. Even checked out the info with a different pharmacist. Finally, I contacted the onc. nurse as suggested by the pharmacist and got the same. It turned out it was ok but made me aware how I need to stay on top of it all and maintain control of my tratment. I have now requested that all tests, medicines, etc. be sent copies of results to all my doctors including my cardiologist. Our hospital has a computer program to bring the info up , as well the as the doctors office, but it is new and they seem not to take the time to look it up. Another short example I saw my cardiologist and he ordered the same blod work my other dr. did. I told him to look it up, which he did and it saved money as well as time. This is a full time job. By the way I have mestasis of breast cance
I had lumpectomy 2 yrs ago on my right breast. Lymphnode negative. I had 34 radiation treatment and I am on Femara. Since my surgery I am having constant pain. I had bone scan, MRI, CT scan PET scan and everyhing came out negative, but my pain in my ribs and my breast is there. I would like to read more about radiation side effects. Thanks
Zula have you looked into Social Security Disability for your mother? She may qualify for medicare or medicaid through SSD now that she has cancer. She may qualify.
I appreciated today's message on communicating with the doctors. I am seeing the follow up oncologist tomorrow after doing extensive research on the "5 year follow up plan" for hormone type treatment. I am refusing to take part in that since my cancer was so small, no lymph nodes involved and radiation with a MammoSite procedure. I would be 84 y.o. by the end of 5 years and the quality of life in those important years would be seriously compromised. I have faith in my decision and have consulted with family, friends, other medical people and feel okay about this decision. Thanks for all the information you have provided for me during this time.
I agree and find it essential to note these things, along with my daily medicines. Since having epilepsy, migraines, cancer, chemo and hypoxia--it helps the doctor recognize any conflicting medicines, as well as understand the condition he or she is best treating. Especially when it gets to cancer, chemo, radiation, diet, fatigue, etc.
I know how you feel Martha. They can sometimes get an attitude.Then they wonder why people go to another town for treatment. They either look blank at you or frown like you are wasting their time...time they need to ram a zillion more patients through the same time-slot that have insurance.
I'm sitting here going through the website. I found very important information. My mom was diagnose with rectal cancer 7 days ago. My siblings and I are trying to do our best to try to find a place that could help us. My mother does not have insurance and we can only go to the public hospitals in Houston. We have one of the best hospital that deal with cancer. MD ANDERSON CANCER CENTER. WE can not attend there due to lack of insurance. What is the best advice that you guys can give me on this subject? I want to find the best resources to help my mom with her condition. Please feel free to email me with any comments, or words of advice. Thank you all. firstname.lastname@example.org
MAYO is the best ! They saved my life Ihad kidney cancer .They support me and my family thru hole ordeal icant thank them enough.Believe in them > Thank you again Dr Zinka enjoy your retirement !!!!
I found that the Doctor and the staff became anoyded when I try to review materials discussed during the previous visit. My husband is very hesitante to ask questions for fear to anoy the doctor or the nurses. I do undestand, that this is a private office and they do not have a profesional to deal with the anxiety caused by the cancer treatment. MxePct
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