Asking questions: Knowledge is power
Before EVERY appointment I have with my Oncologist I ALWAYS prepare a list of questions. I also had a list that I asked when I collected my results which was before I met my Oncologist. These were answered by my surgeon and breast care nurse right at my very first visit. I recorded the earlier conversations I had (with permission) in case I wanted to listen to the conversation over again. This put me in a really good frame of mind at the time of collecting my results:
Asking questions enabled me to understand my diagnosis fully, what treatment was being proposed and why, and understand what the ‘medical’ statistics were.
I could then do my own research to decide if I wanted all of the medical intervention and fill in the gaps that aren’t offered by the medical profession (namely healing the whole body whilst the medicine aims to target cancer cells & also damages healthy cells).
I believe healing the whole alongside medical intervention can significantly reduce the risk of the cancer coming back as well as reducing side-affects to treatment, increasing toleration to the toxicity of medication, increasing feelings of well-being during treatment and potentially help the treatment to be as effective as possible.
Most Oncologists and medical practitioners aren’t aware of the benefits of nutrition and mind practices, simply because they haven’t had the training and their scientific studies don’t research it. There are plenty of examples of qualified doctors and surgeons who had the same limited perspective, and then after a cancer diagnosis, did their own research and discovered the enormous benefits of an integrative mind-body-being approach. Dr David Servan-Schreiber, author of ‘anti caner a new way of life’ is a classic example of this, following a brain tumour diagnosis.
I would ask questions about any changes I had noticed within my body, such as my bloated belly, watery eyes, scabby nose, boils etc – for reassurance and peace of mind, either at the GP or when I spoke to my Oncologist.
I was NEVER made to feel like I was wasting anyone’s time when I asked questions. I always had a smile on my face, was light hearted and asked politely and respectfully. And I always expressed gratitude that my questions were answered.
To give you an example of the kinds of questions I asked, here is a list of questions I’ve just found on my phone from a video call I had with my Oncologist after my operation, dated 12th March 2021. (I had spoken with a new and different Oncologist prior to that who had given me my post op results)
Can I clarify that as far as you’re concerned, the cancer is now completely irradicated and everything now is to try and reduce the risk of re-occurance?
What is my risk of re-occurance?
Can I also confirm that nothing you do now is going to prevent a new cancer from forming? It’s only going to prevent re-occurance of the existing cancer?
What % risk does radiotherapy bring my risk of reoccurance down to?
The other Oncologist I spoke to said that radiotherapy was a ‘just in case’ treatment – is that the case? He presented it to me more as an option. He seemed to think Tamoxifen was very important, and that radiotherapy was a ‘take it or leave it’
Does radiotherapy help to reduce a stage 4, or is it helping to reduce risk of re-occurance in the right breast only?
5 days or 15 days of radiotherapy: are there stats on whether having it over 5 days increases side-affects, risk of lung damage / asophogus as a high daily dosage is given?
Out of radiotherapy, tamoxifen and immunotherapy – what would you say is the highest priority, then the 2nd and the third?
Does tamoxifen reduce libido?
If my libido has increased since stopping high dose Chemo, does that mean I have higher levels of Oestrogen?
Does Tamoxifen lower estrogen levels, or does it do something ot the estrogen the body naturally produces to prevent it from attaching to cancer cells? Ie. Is it selective?
As I was Oestrogen and progesterone sensitive (positive), does that mean I have higher levels of hormones, or just that my body used the hormones to grow cancer?
Is the immunotherapy treating me systemically – ie. Mopping up cancer cells that may be circulating around the body / helping my body to fight them?
The 2mm residue remaining from the tissue removed during the operation: is that because my body became resistant to the Chemo? Is it a sign that the cancer is more aggressive / stubborn that it didn’t go? How does that residue impact my long-term outlook?
If there is a complete response in lymph nodes and the tumour shrank from 39mm to 2mm in the breast, and the 2mm residue was removed with a very clear margin, then what are the odds of there being any ‘loose’ cells? Ie, does that indicate that the Chemo has zapped any loose cells?
Is the immunotherapy I’m on systemic (ie, is it targeting any loose cells in the whole body, including the right breast)?
I’m leaning towards starting the Tamoxifen & continuing with immunotherapies, and politely declining radiotherapy. How would you feel about that? Would you have radiotherapy if you were in my position?
Does radiotherapy affect white blood cell count? My body is still recovering from Chemo – I can tell that impacted my digestive system and immunity. I want my immune system to be functioning as well as possible to be able to deal with any potential future cancer cells. I’m concerned that radiotherapy will give my body more toxicity for it to deal with and leave my system more vulnerable.
My calcium levels are 2.6 – the chemo nurse said this is slightly high, but that it’s normal for me …. What is that indicative of? And why do you test for calcium?
Interestingly, my regular Oncologist had different viewpoints to the other Oncologist I had spoken to, which highlights why second opinions can be so important and why it’s really important to ask questions if you’re not sure, or if 2 Oncologists contradict one another. I really trusted my main Oncologist, so I would always check with her.
At this time, I was still deciding on whether to have radiotherapy or not. Had I had a complete pathological response, I was going to opt out of radiotherapy. Of all the post op treatments, my Oncologist agreed this was the least crucial one (because I was on Kadcyla and Tamoxifen which are both systemic), however, due to my age she recommended I had it.
At this point, I had also decided NOT to have Kadcyla, based on the advice of the new Oncologist I spoke to, however, my regular Oncologist felt strongly that I should have it, and as my trust in her AND my body had grown over the months, I switched from the immunotherapies to the Kadcyla (after asking lots of questions, reading the study, speaking with my brother who has a PHD in bio chemistry and discussing it with Phil who has a MSc in molecular nutrition and is a naturopath), and am delighted to say I didn’t notice ANY notable side-affects and I now feel that it was the right decision. I also feel grateful to have been offered this drug as it is new and only available in England.
I made my decisions not only based on asking questions, my understanding, speaking with a nutritionist & naturopath, how I felt and how my body was tolerating the medication, but also my age. As I am only 46, have children and a lot of life to live, and my body is tolerating the medication so well ….. I have continued with it. I believe weighing up risks versus benefits and quantity vs quality of life is important, as well as, of course, self-enquiry and listening to your truth.
The morning after that video call with my Oncologist I did a yoga practice and a meditation and at the end I asked …. ‘show me my next move’ and the reply that came was ‘cover yourself’ ….. that was my final decision made! I went ahead with the shorter course of radiotherapy and started the Tamoxifen the next day. I haven’t had any notable side affects to either and I believe that because of all of the ADDITIONAL things I am doing to support my body, mind and being, and that’s what I feel is missing from the literature we receive from the medical arena.