12+ questions for Oncologist: Did I cover everything?

Anonymous
Anonymous Member Posts: 1,376
edited August 2018 in Surgery - Before, During, and After

I meet with an oncologist next month and I'm preparing a list of questions to ask him or her. Did I omit anything important, or did I cover everything? Are some questions unnecessary?

I'd appreciate anyone who can offer input. I want to be prepared. Thanking you in advance.

I wrote the questions by reading reputable medical websites, and by gathering information from this site:

-------------

Please explain your answers to my questions in a way a non-medical person can understand..

  1. What is my recurrence risk without radiation? What is the "absolute risk" reduction benefit from radiation? What is my "relative risk" reduction?
  2. What is the expected outcome of the treatment? What are the benefits? What are the side effects, not only from the medicine but to my skin? Are they permanent? Are there any other options that are less harmful?
  3. What tests did you use to determine that this is the best treatment for me? Why did you chose the specific treatment/drug for me?
  4. How will you support my immune system during and after this treatment?
  5. How can I best recover from this treatment? Do you recommend any natural health protocols, lifestyle changes or ways to detoxify?
  6. What is your opinion on supplementation and nutrition while I am on this treatment and afterwards?
  7. Will this treatment target cancer circulating tumor cells and stem cells?
  8. Do you feel that there is an emotional aspect for reversing cancer?
  9. What is my prognosis? If I take no treatment? If I take radiation but not cancer medicines?
  10. Since radiation only reduces the risk of a recurrence in the breast area, what about a metastatic recurrence?
  11. Impact of refusing treatment at this time on future use of my insurance for cancer treatment?
  12. Would you recommend this treatment plan to your wife, child or yourself?
· Share on FacebookShare on Twitter

Comments

  • moth
    moth Member Posts: 4,800
    edited July 2018

    I'm not sure where you are but some of these questions are for a Medical Oncologist (MO) and some are for a Radiation Oncologist (RO). I've read that in some jurisdictions you end up speaking to just one person but in North America, these are usually separate.

    If you're going to be speaking specifically to an RO about radiation treatment, then I think you're missing some questions. I think you won't need to ask them because that's the part they will be explaining but I'd write them down just so you have something to glance over to make sure you understand the answers to each of them before leaving.

    - Do you recommend axillary or intramammary lymph nodes receive radiation?

    - Since the tumor is in on the left side, what procedures does your facility do to protect the lungs & heart? Will I be able to do respiratory gating?

    - what radiation protocol are you recommending? How much radiation spread over how many doses? Am I a candidate for the shorter "Canadian" protocol?

    - what about "boosts" to the tumor bed?

    Also, if you had a lumpectomy than radiation is standard of care. It's not really 'chosen', it's part of the treatment package, kwim? BUT, I just read some of your other posts & yes, because of your age, it possibly could be skipped, so I see why you want to get lots of details from your RO about whether to proceed or not.

    The questions about "cancer medicines" - I'm assuming you're talking about aromatase inhibitors. That would be a question for the MO, not the RO.

    I don't think physicians can answer 11 at all.

    btw, if you want to look at recurrence risks you can look at them yourself but you need to know your tumor's hormone receptor status & I know you said in another thread you didn't have that info at the time. Lifemath http://www.lifemath.net/cancer/breastcancer/therap... & Predict http://www.predict.nhs.uk/predict_v2.1/tool I believe these tools both assume either mastectomy OR lumpectomy + rads as the surgical baseline options so they will not tell you anything about radiation but they can tell you about your general risk of recurrence & how that might be affected by aromatase inhibitors if you end up taking one.

    hth!




    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2018

    Thank you moth!

    Oh my goodness, I didn't even know there were different types of oncologists. I suspect my first visit will be with a Radiation Oncologist, because my surgeon already told me that I would need radiation (five to seven weeks, five times a week). Will see what the oncologist has to say.

    Thank you for giving me more questions to ask. They are excellent. I will go back to the drawing board.

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2018

    I tried the Breast Cancer Treatment Outcome Calculator for a person my age. I put in all the information I currently know. For things I'm unaware, I played devil's advocate and put positive.

    Do you know if the calculator assumes radiation therapy? Here are my results concerning mortality are:

    Cancer Mortality: 5.5% expected 15-year Cancer Death Rate.

    7% 15-year Kaplan-Meier cancer death rate

    Life Expectancy: Without therapy, this cancer shortens the life expectancy of a 74-year-old woman by 0.5 years. (from 13.3 years to 12.8 years)

    Therapy benefit:

    The therapy selected would improve average life expectancy by 0 years, or 0 days over expectancy without therapy.

    If this calculator is accurate, I really don't give a hoot about .5 years.

    Clearly I haven't been given all the information to date. I'll ask for it when I meet with the surgeon in two weeks.

    I don't even know the following.

    Ki-67 status
    ER Status
    PR Status
    HER2 Status
    Histological Type
    Grade

    · Share on FacebookShare on Twitter
  • moth
    moth Member Posts: 4,800
    edited July 2018

    you know your histological type - your signature says IDC. That's invasive ductal carcinoma

    for ER & PR, positive is not devil's advocate; it has better survival rates than "triple negative" which is negative for ER/PR & HER2

    I believe all the calculators are making the assumption that you either had mastectomy or lumpectomy+radiation. Those are the baseline surgical treatments & they give essentially the same overall survival statistics.

    Did you select the various therapies such as Aromatase inhibitors or chemo in the bottom left before running the calculator? You get zero benefit if you don't add any treatments. You have to add treatments.

    & I think you need to get a copy of your pathology report :)

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2018

    I meant I put negative, not positive, in the calculator.

    Think I really need the doctor to go over my pathology report rather than guess. When the nurse called last week, she said the important things in the pathology report were that the margins were clear and the nodes negative. She indicated that it wasn't important to go over the rest of the report at that time.

    · Share on FacebookShare on Twitter
  • adgnola
    adgnola Member Posts: 18
    edited July 2018

    Viewfinder, do you have a copy of your pathology report? There are a lot of resources to help you decipher what everything means.I read in another post that you had a lumpectomy so clear margins and negative nodes is all good, but you should have known the hormone receptors and her2 status before the lumpectomy. I got this information from my initial biopsy report and this information helped me decide on a treatment plan. I assumed this was standard protocol so a patient can make informed decision before treatment begins (including surgical treatment).


    · Share on FacebookShare on Twitter
  • adgnola
    adgnola Member Posts: 18
    edited July 2018

    This will help you if you have a copy of your report:

    https://www.breastcancer.org/symptoms/diagnosis/pa...

    I was just diagnosed in June and navigating all of the information has been a challenge at best. I hope you get the answers you are looking for!


    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2018

    No, adgnola, I don't have a copy of my pathology report. I'm going to call the surgeon's office tomorrow and ask them to mail me a copy.

    I'll aslo ask about these so I can get a jump-start on researching before I get the report:

    Ki-67 status

    ER Status

    PR Status

    HER2 Status

    Histological Type

    Grade

    In all fairness, I recall that the doctor said something about hormone receptors but, at the time and in my ignorance, they meant nothing to me. I was understandably overwhelmed and everything seemed blurred except that I needed a lumpectomy.

    I've download the Guide. Thank so much for the link.

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2018

    Well, I finally have an appointment with an oncologist this Thursday. I've ended up having about two dozen questions, though I'm going to try to whittle them down before we meet.

    Is that too many to ask an oncologist during our first meeting?

    · Share on FacebookShare on Twitter
  • edwards750
    edwards750 Member Posts: 3,761
    edited August 2018

    That would depend on your oncologist’s willingness and/or ability to answer them at your first meeting not to mention the timeto devote to your appointment. Hopefully you won’t have a doctor that has you on a timer. Mine was very receptive to questions. I didn’t have that many but whose counting?

    It’s a good idea to be prepared and it sounds like you are. If you have additional ones you can always call your doctor later.

    I took my husband with me for a few appointments. He was very helpful.

    You can do this. Trust your medical team. Your relationship with them is important.

    Good luck!

    Diane

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2018

    Well, after many hours researching and writing down a long list of questions, I narrowed it down to basically one statement and one question when I meet with the oncologist the first time tomorrow afternoon.

    "I don't want to take any further treatment; no hormones, no radiation (which is what the surgeon said will be my recommended treatment).

    "What is the relative risk reduction and 'absolute risk reduction' without treatment?"

    I'll let her go from there. As some of you know, this has been my wish since I was diagnosed with breast cancer in April. I will, of course, ask questions related to her responses.

    Again, thanks to everyone on this board who has helped me through this. When I make a decision I'll let you know. If you're so inclined, I ask for your prayers.

    · Share on FacebookShare on Twitter
  • Icietla
    Icietla Member Posts: 1,265
    edited August 2018

    >>"What is the relative risk reduction and 'absolute risk reduction' without treatment?"<<

    I think you mean to ask about risk reduction with further treatment.

    Prayers for you. Prayers for all.

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2018

    I was at the oncologist's office for three hours today. I like my doctor very much. She gave me a lot of time and explained things as simply as possible. She's sending me to a radiation oncologist and also for a bone density scan, then I return to my current oncologist in about three weeks.

    They are going to do an Oncotype DX on the tissue they removed from me before she makes a recommendation. Based on what is known to date, she spoke about a short course of radiation. I'm at low to intermediate risk for recurrence: 70-80% chance that I'll be cancer free, BUT these preliminary thoughts are subject to the findings of the Oncotype testing. She only briefly spoke about meds. No decisions have been made.


    · Share on FacebookShare on Twitter
  • Georgia1
    Georgia1 Member Posts: 1,321
    edited August 2018

    Thanks for the update, Viewfinder. What a long day, but that all makes complete sense. The results of the Oncotype DX test will be very enlightening.

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2018

    Yes, it was a long day! But it included a general check-up, blood tests and, to my surprise, a talk with a social worker who is part of the staff. They jump right in to check how you're feeling, eg. depressed, anxious, and to explain financial resources from grants if needed.

    Edit: Oh, and paperwork. Did I fail to mention paperwork?!

    Everyone made me feel very comfortable and for that I'm so grateful!

    · Share on FacebookShare on Twitter

Categories