Questions to ask at your Oncologist

celetas

Hi all.  I'm having a helluva time figuring out what my information needs are in terms of "ïnformed consent" for the standard bc treatments (chemo, rads, HT) that my BS is recommending.  I have my first appointment with a Med Onc in December and I do NOT want to waste my time not getting answers.

And to be honest my experience so far is that, while I have lots of written questions when I see my BS, I don't get enough time to drill down and get proper answers (and I clearly don't think fast enough on my feet) - so I leave my appointments with that "what just happened" feeling.

I have been trawling this site looking for a list of questions to ask and I haven't really found what I'm looking for.  Have I missed it somewhere?  I thought (hoped) by now there would be a list of great of questions that beginners on this "Big Ask" (or big-ass, take your pick) journey would find helpful in their quest for information that could help with their decision-making and understanding about what treatments they need, what treatments they choose and what the ramifications are of each (treatment and choice).  Of course each person would personalise their questions to suit their individual circumstance - but a basic (yet somehow comprehensive!) list would save every one of us from having to re-invent the wheel.

Maybe I'm being completely anal about this, but the whole treatment thing does not seem a simple thing to understand/decide to me.  I'm a great believer in the "two heads are better than one" proposition - and please no wise cracks about Tasmanians from any Aussies reading this!!

So, my question is, is there a list of good questions to ask already in existence (that are designed to avoid airy-fairy motherhood responses, eg. well it's hard to tell, no one knows the answer to that, that may or may not be the case, it's unlikely that will happen, in most cases blah blah blah), or should we start a list?  My list is a WIP...but I'm trying very hard to craft something that doesn't let the experts off the hook when it comes to getting answers that satisfy me. 

Any thoughts, anyone?

celetas

No takers then?  I'm going to post the list of questions I've prepared for my first consult with my Med Onc that I think will help me understand where I'm at (don't even know if he's the right person to ask about RT...guess he'll tell me).  These Qs are solely in relation to RT; of course I will change them quite a bit for questions concerning chemo or hormone therapy.  Maybe someone else will find it a useful basis to start with - and hopefully others will be able to add better ones -please!  Some questions I know, or think I know, the answers to already, but they're the experts (and anyway it's a handy way to gauge their attitude/willingness to walk this path with me).  Here goes:

(Intro) In November I had surgery to remove a cancerous tumour in my breast and 1 node that also showed a small amount of cancer. My BS recommends a course of treatment that includes chemotherapy, radiotherapy and hormone therapy. Focusing only on the radiotherapy for now:

Q1. What exactly in my pathology report says to you that RT is absolutely necessary? Why? What else can you tell me about each of the features you mentioned?Q2. What factors in the report mitigate the need for RT? Why? What else can you tell me about each of the features you mentioned?Q3. What is the significance of the other findings in the pathology report that haven't been canvassed in the first two questions? What information do those results convey?Q4. Cancerous cells were discovered in my sentinel node. My BS did not expect to find cancer in the SN and no further nodes were excised during surgery. How much of a difference does this node involvement make for (a) my prognosis and (b) the types of treatment I am now being offered:

 Would the recommended treatment regime be very different if the node was clear? What treatment would be recommended in that scenario? Why?

 Would the recommended treatment regime be very different if further nodes were taken and found to be clear? What treatment would be recommended in that scenario? Why?

 Would the recommended treatment regime be very different if further nodes were taken and cancer was detected? What would the recommended treatment be in that scenario? Why?

Q5. What are the likely/common side effects of RT?

 How long does it generally take women to recover from each of these?

 Are any of these SEs irreversible/un-recoverable from?

 What proportion of the RT treated population experience these SEs?

 What percentage of women experience these SEs during or very soon after treatment

 Within 5 yrs of treatment

 Between 5 & 10 yrs

 10+ yrs after treatment?

 How are these SEs treated/managed? Do any drugs/treatments used to counteract SEs have side effects themselves? What are they? How are they managed?

Q6. What are the possible but less common side effects of RT?

 How long does it generally take women to recover from each of these?

 Are any of these SEs irreversible/un-recoverable from?

 What proportion of the RT treated population experience these SEs?

 What percentage of women experience these SEs during or very soon after treatment

 Within 5 yrs of treatment

 Between 5 & 10 yrs

 10+ yrs after treatment?

 How are these SEs treated/managed? Do any drugs/treatments used to counteract SEs have side effects themselves? What are they? How are they managed?

Q7. What are the rare side effects of RT?

 How long does it generally take women to recover from each of these?

 Are any of these SEs irreversible/un-recoverable from?

 What proportion of the RT treated population experience these SEs?

 What percentage of women experience these SEs during or very soon after treatment

 Within 5 yrs of treatment

 Between 5 & 10 yrs

 10+ yrs after treatment?

 How are these SEs treated/managed? Do any drugs/treatments used to counteract SEs have side effects themselves? What are they? How are they managed?

Q8. What processes are going on in my body while I'm being irradiated?

 What is happening to me at both the cellular and the molecular level that's causing the SEs we talked about earlier? (eg. What is happening, for example, to cause breast tissue to become harder, feel more rubbery; what is going on when women report bone fractures or skin discolouration months or years after RT; what is the cause of the nausea, fatigue, malodorous armpits, etc)?

 Is there anything that can be done to prevent or ameliorate the damage? What damage can be repaired, how quickly, and what can be permanent? How open is the medical profession to helping women manage SEs (particularly unusual SEs and SEs not previously unattributed to RT)?

 How big a problem is radiation scatter damage? What can happen as a result? Can the parts of me that are not supposed to be irradiated (face, eyes, teeth, neck, arms, lungs, bones, etc) be completely shielded from the radiation? If not, why not?

 Why is it considered safe for all of me to be exposed to radiation but not safe enough - presumably - for others to remain in the room?

 I've read that one of the greatest predictors for getting cancer is age and that, contrary to conventional wisdom, the benefits of irradiating adults should now be questioned because what the medical profession has previously not taken into account is the accumulation in adults of pre-cancerous cells - that may only need a minor provocation, like an X-ray or other medical tests, to become malignant. Are oncologists generally aware of, and accepting of, this proposition? Has this information been factored into the recommendation that I have RT? How can you help me weigh up the benefits and the risks of RT?

 What are you, or other oncologists in this field, concerned about that is not yet fully understood about the effects of RT?

Q9. If I don't do RT, where am I now in terms of risk for:

 Recurrence in the same breast

 Recurrence in the other breast

 A new unrelated cancer forming elsewhere

 My BC metastasising

 Having to deal with a more aggressive cancer later?

 Dying from this or a later BC-related event

ie. What is my baseline, my relative risk? How do you arrive at that figure? How is my risk calculated?

Q10. What is my absolute risk if I accept RT of:

 Recurrence in the same breast

 Recurrence in the other breast

 A new unrelated cancer forming elsewhere

 Metastasis

 Having to deal with a more aggressive cancer later?

 Dying from this or a later BC-related event

ie. What is my real risk? How much does RT improve my chance of not having the above issues? What factors are applied in arriving at the final figure?

If I do get a recurrence is it likely to be the same type of cancer or is it possible/probable for it to be a more or less aggressive/invasive tumour?Q11. Are there any other tests available that could indicate - on the spectrum of very unlikely to highly likely - whether RT will be beneficial for me? Q12. Should I have my Vit D & calcium levels checked before starting any of the recommended therapies? Are there any other baseline checks I should have done? Why? What will they tell us?Q13. Are there any other credible therapies (anywhere, not necessarily only those that are locally available) that could provide a similar outcome/achieve similar results, but that don't carry the actual and potential risks/SEs of radiation?Q14. My cancer was removed with wide, clear margins. If there are cancerous cells remaining, how long would it take before they would grow to a size that could be detected? What monitoring/testing regime would I have to ensure any new or recurring cancer is detected early? What sort of tests, how often and where do I go to access them?Q15. If any cancerous cells are still extant in my remaining breast tissue, could the cells simply move to another region and not be detected by mammograms or ultrasounds? Or must these cells appear as breast cancer first? If they can form or re-form anywhere, how am I monitored for this?Q16. Whether I do the RT, or whether I don't, what monitoring is done to ensure any anomalies are detected early? And do these have side effects? New and improved machines and technologies and new tests are being developed all the time - is there anything available in Australia or elsewhere that I could access to increase my likelihood of rapid, early detection.Q17. How can I tell if I'm benefitting from RT? Q18. What is the process for receiving RT: Pre-planning

 What is the difference between external beam radiation and intensity modulated radiation therapy? What is available locally? What is available elsewhere in Australia?

 What are the pros & cons of partial v whole breast irradiation? Do I have a choice if I do RT locally/elsewhere in Australia?

 What are the pros & cons of having a higher dose over shorter period v regular 6-7 week course? Do I have a choice if I do RT locally/elsewhere in Australia?

 Do I have a choice about whether to have accelerated partial breast irradiation or accelerated whole breast irradiation? Do I have a choice if I do RT locally/elsewhere in Australia?

 Is it usual practice here to deliver a boost dose at the end of RT? What is the benefit of a boost? Is a boost necessary for me? Why?

 Where would the boost be delivered (breast or armpit or both)? Is it a once only boost, or a week of boosted rads?

 How does having a boost impact SEs (including immediate burns/blisters and later tissue/bone damage and/or new cancer onset)?

 What is the total timeline for my 3 recommended treatments (CT, RT, HT)? Do they operate independently, do they run sequentially or concurrently?Preparation & Planning:

 Are you the right person I to answer my questions about RT (the processes, local practices, SEs, my concerns etc) or should these be directed to my Radiation Oncologist?

 When do I meet my Radiation Oncologist?

 How will I be prepared for RT? What do I do when I arrive at the place I'm to undergo the RT planning session?

 What do I do when I get there? Will they be expecting me? Who do I ask for? Do I need to take anything with me?

 Who's involved in the planning session? How many specialties/disciplines are involved in my planning session?

 Do you/the Radiation Oncologist discuss my final RT treatment plan with me before treatment begins to explain what is going to be irradiated, how deep, what's going to be hit that amounts to collateral damage, etc?

 Who does the planning "mark-up" and who checks that the plan is satisfactory? How much discussion/consultation goes on with me/other professionals involved? Are aspects of the planning discussed with me or told to me?

 Is it usual practice to use markers or tattoos in the planning phase? Are tattoos given under a local anaesthetic? Can I refuse tattoos? Or have a say in their colour? RT Delivery:

 How will I prepared on the day I undergo RT? Where do I go? What do I do when I arrive? Will they be expecting me? Who do I ask for? Do I need to take anything with me?

 Before I begin treatment will I be given advice about any special care I need to take before, during and after treatment eg. skin care, diet, fluid intake, vitamins, etc?

 What patient care is provided before, during and immediately following the treatment?

 How is RT delivered? How long does it take to complete each session and for how many days does it continue?

 Who specifically delivers the RT? A Radiation Oncologist, a nurse, a technician, or a combination of people? Will I deal with the same person/people throughout the treatment?

 Are you there? Is the Radiation Oncologist there? Who is directing the RT sessions?

 Who in my team do I see if I'm having problems with the effects of the treatment (during and after, including after hours)? Is there an expectation that I can wait (days) to see/speak to whoever that is?

 What is the RT delivery room like? Is it warm, cold, etc? What am I wearing? Am I covered? Does RT penetrate sheets, blankets, etc? If I'm not covered, why not?

 Can I expect only those immediately involved in my treatment to be viewing the session?

 What could go wrong during the treatment? Who monitors the sessions? How do they know if something is going wrong?

 Can I alert anyone if I think there is a problem? How do I do this?

 How soon can the treatment be stopped if there is a problem? How is treatment continued?

 I've heard it's common for women to experience severe back pain at their first treatment session. How often does this occur and how can we ensure it will be prevented from happening to me?

 Can the treatments be stopped and re-scheduled if I think I am too sore, burned or blistered to undergo them at the set schedule? I have also heard, anecdotally, that burning, blistering etc should not occur and that if it does, this speaks to the skill level of the person delivering the RT. Is there any truth in this?

 Will I have dressings that need to be managed? Do I do that myself? Am I given written/verbal instructions on how to do this? Am I given details regarding who to contact if I need advice/assistance etc between treatments? Are you that person? How available are you/that person?

 Who do I contact if I experience SEs I think are a result of the radiation (during the course, after completion, and much, much later)? Who helps with the on-going management of SEs? For how long after the treatment will I be monitored for SEs?

 What happens after all the RT is completed? Who's involved in monitoring my recovery from RT? Is continuing care provided?

Edited to update my re-organised set of questions.  Can't explain why some is bold type & some not.

celetas

I've also decided to post my introductory preamble - a sort of 'setting the tone' thing'to help me work out if I'm working with someone who is on the same page as me as far as my involvement in the process:

I want to understand what our relationship throughout my treatment for this disease and beyond will be like. I want to know how available you will be for me (particularly over the looming holiday period), how often I should expect to see you over the next few months, what role you will play in my treatments, whether you are too time-poor to take on/devote the time necessary to a new patient, etc. Everything that is likely to happen to me from here on in is a well known path for you, but for me, this is absolutely unchartered territory.

It's important to me that you understand that the quality of the rest of my life is as important to me as the quantity of it, so I need an Oncologist:

a) who will take the time to make sure I fully understand the benefits & pitfalls of the choices I will need to make

b) who will not expect me to be a breast cancer expert who has all the right questions, and who will understand that sometimes I won't know the questions I should be asking (so someone who will elaborate and clarify as a matter of practice)

c) I don't want to be fearful or embarrassed about asking questions; I want to be able to place everything I have questions about squarely on the table. I want it understood that every question I ask is informing my decision-making

d) I don't want my concerns to be overlooked or made light of, or to feel rushed when we are discussing my treatment options. If necessary I'm happy to book double blocks of your time to avoid being rushed

e) who's aim during consultations is not to convince about the merits or otherwise of any treatments, or counsel me to have or to fore-go treatments, but who will educate me to the level I need to reach a position of informed consent

I'd prefer to communicate my questions to you via email and receive written replies I can review and consider. I'd like my appointments to be based around discussing the answers you've provided to my questions. (Happy for you to bill for a separate consultation for the time you spend answering my questions). Is this an okay way to proceed for you?

Cocococo103036

Hello Celestas,

I seem to have found a soul sister - you are approaching this in EXACTLY the same way I did. I am a detail oriented, information hungry pedant who also believes to be informed consent, it must be genuine consent. I took the same approach as you. I have some tips as our approach seems to terrify medical practitioners - all they can see is a looming litigation if they put a step wrong - and that is tread carefully and try to proactively identify specialists who are active researchers and/or a research bias, as they are more likely to be open to an intellectual dissection of your issues and less likely to flee. Also be prepared to feel like getting solid information out of some Radiation Oncologists is worse then pulling teeth. One I dealt with reminded me of a hostile witness in the witness box rather than a medico who was supposed to inform me sufficiently to obtain my informed consent. Also - be prepared to be dumped by your specialist. My surgeon did so after surgery - one the day I got results of ultrasound and MRI showing the lingering breast pain in the surgical site I had concerns about for six months was caused by a seroma. Maybe he was worried I would blame his surgical techniques? If you have a team who you value highly you need to weigh up your need for information with their right to not treat you if you annoy or scare them. They seem to get especially annoyed/scared with patients who put things in writing and who take an active interest in treatment issues and want solid information. 

suz3

Hi celestas,

I'm glad you started this thread.  I'm having some of the same problems and have some of the same questions.  I'll use your questions if you don't mind.  I ' m also struggling with what operation to choose (lumpectomy which means radatio or mastectomy).  To many questions and decisions.

Cocococo, I also had a ps who was alittle lery with me because I asked so many questions and some unusal ones (about weight and chemical allergies).  My husband said I asked to many questions and now he is not sure if I would keep his perfect record in tack. 

Well its tough out there, hang in there ladies. 

celetas

LOL - DH says I don't ask enough questions!  What I think he means is that I don't get enough answers.  I'm feeling very relieved I'm not the only one who is troubled by this steep new learning curve (getting the answers you need from specialists I mean).

Coco - I like to think of my dealings with surgeons, nurses and medical professionals in general as 'my hired help' whose job is to serve me the best way they can.  But I run the show.  It doesn't always work out that way - but I'm trying to keep control over what's happening to me.  Hope this idea helps!

Suz3 - I really struggled with the lumpectomy/mastectomy aspect too.  After looking at what was possible in terms of reconstruction for me after a mastectomy, I decided to go the conservative route.  Removing my tumour did not mean I had to have a mastectomy, thankfully, so I had a choice.  I found something called ''Çell enriched breast reconstruction'' you might find helpful (google will probably find it; if that doesn't work try Cytori as your search parameter) - just finding that this possibility exists was enough to sway me - in fact it was instrumental in me eventually choosing a lumpectomy (gave me hope that I had more options if I decided I really needed cosmesis of some sort).  Good luck with your decision, hope all goes well for you.