Deciding about Chemotherapy
I thought I would share with you my recent experiences in deciding whether to have chemotherapy or not. My tumour was IDC NOS, Grade 2, Stage IIA, 25mm, ER+ PR+ (both 100% staining, strong staining), HER-. It was associated with 26mm DCIS (labelled 'extensive' in the pathology report). Ki-67 was 15%.
I had a wide local excision with a return to surgery to get a clear margin on the DCIS. No sentinel node involvement. Based on everything I had read I expected to have radiation and endocrine therapy. I did not expect to have chemotherapy. When I visited the Medical Oncologist he said I should have chemotherapy.
I was surprised and not sure this was necessary so I sought a second opinion. I got a referral but was unable to access a Medical Oncologist to get a second opinion due to their heavy workloads. I know Grade 2 is the hardest cancer to work out if chemotherapy is needed or not.
So I decided to research my own second opinion. I went only to peer reviewed journals by doing a Google Search and through Biomed Central (Open Access as I cannot afford to subscribe) and searched for recent evidence regarding chemotherapy for my type of cancer. There are many reliable evidence-based articles out there on this, as the issue of whether to treat these cancers with chemotherapy or not is a live one.
From my reading I worked out that my cancer was probably Luminal A (which can be pretty closely worked out from the information on my pathology report). Single articles, however are not to be relied on as a sole source of information as they may have their own bias or study limitations (especially if there was a small number of subjects).
I used them to get a sense of the situation and to understand some of the finer detail about my type of cancer. Many of them referred to a couple of highly reputable international bodies - in particular ASCO and the St Gallen's Consensus (International panel of oncologists).
I looked up these sites and found specific discussion on the value of chemotherapy for Luminal A tumours (and the current thinking on what makes a tumour Luminal A) in the 2009 and 2011 St Gallen's Consensus proceedings. I also registered with Adjuvant Online and put in my characteristics to get a sense of the absolute risk reduction with the addition of chemotherapy to my treatment regime. The additional risk reduction with chemotherapy was minimal if I was also having radiation and endocrine therapy. So - the outcome is I have decided not to have chemotherapy.
if I could have got to a second Medical Oncolcogist to have this conversation I would have. This was an incredibly stressful time and clearly it is better to talk these things through with someone who is a specialist. Everyone's prognosis is different and what is right for me is not necessarily right for anyone else. But I thought my story might be helpful to those who live in areas where it is not possible to get a second opinion.
I was not sure what to do. I want to recover and I do not want this cancer to come back. I am not a scientist or a researcher. I do not have a medical background. I needed help to decide and found that the information to help me decide is available on reputable sites if I looked in the right places.
I hope this is helpful. Best wishes to all of you in your journeys.
Karen