After our wonderful year in Samoa, our exciting trip for me to speak at Exec Sec LIVE Conference in Dubai, time with Charles’ family in London and a longed-for visit to our daughter and family in Washington DC, all such wonderful journeys, we were however pleased to be home for Christmas 2014. We needed to stop and take time to re-settle, catch up with friends and do the things we love to do. But, unknown to us, a new pathway was stretching out before us.
As I had a sister who died of breast cancer I am meticulous in having mammograms and before I went to Samoa my results were clear. I was therefore caught unawares when I felt a lump in my lower right breast during the Christmas period. I took a couple of days to think about it – I have had breast reduction surgery – perhaps it was scar tissue? I had cellulitis in that area from an infected mosquito bite while in Samoa – perhaps there was cell damage which had left a thickness?
In New Zealand everything closes down over Christmas and New Year so it was January 5 before I could see my Doctor. We have a public health system in New Zealand, and Charles and I do not have medical insurance – a bit scary at that point. My Doctor suggested and we agreed to pay for the radiologist so that we could be seen immediately and, if required, she would then refer me on to the hospital. She referred me for an appointment the next day with the radiologist for a diagnostic mammogram and ultrasound.
After the mammogram and the ultrasound, the radiologist’s words were “Do you wish me to be frank?” I had seen the nasty black shape on the ultrasound screen so my response was “Yes, but please go and get my husband first, I want a second pair of ears to hear this.” The radiologist was very clear, “This is not a cyst” he said, at no point was the word “benign” used and anyway I knew I had a cancerous lump, so that was that.
Note 1: If possible always have a “second pair of ears” at an appointment. There is so much information you will not always be able to think straight. You can get stuck on some specific piece of information and miss others. Try and write down, perhaps in an email, what you have heard shortly after the appointment and get your “second pair of ears” to read it – that really helps clarify what you have understood.
After a further visit to my doctor that Friday afternoon, a referral to the public hospital was made and then it was sit and wait up to 1-2 weeks for an appointment as cancer is considered urgent. On the Monday the hospital rang, they had an appointment for me the next morning and would do a needle biopsy at the same time – wow, that was prompt!
At this stage I started to advise everyone within my circle of family and friends. I wanted them to know what was happening to Charles and me. I knew I would offer support if it was one of them and I needed their support through this process – and, if everything was OK, that would be awesome news.
Note 2: Do share. Explaining to others really helps you to process and clarify what is happening. Use your networks, at times you might ask one person to let others in that circle know – you do need to talk about it, but sometimes it is too much to repeat the same thing over and over. Do it the way that best suits you, face-to-face, phone, email, social media, whatever works; it is better shared than held inside. Getting all the information doesn’t happen for ages and ages – see Note 3.
The appointment with the hospital was excellent. At no time did I feel rushed and there was some muted excitement as I had a “palpable lump” and “Could one of the other doctors who is just about to do a higher level exam feel it as they hadn’t had many of those recently?” – Wellington Hospital is a teaching hospital and I was OK to share. Through the whole process I felt respected and empathized with by both doctors and nursing staff, unrushed and my willingness to participate in the learning opportunity really appreciated.
The needle biopsy was straightforward and I liked the approach – “we have to open this bottle of local anesthetic so we might as well use it all” and a big smile – it was painless. I could watch the needle going into the lump on the ultrasound screen and I was left with only a tiny cut (made by a scalpel) and minor bruising. Again I was clear that this was cancer but there were positives; this second ultrasound still did not show any impact on the lymph nodes and the lump was small.
Two weeks later I met with the specialist surgeon. More examination, more ultrasound as the scar tissue from the earlier surgery did complicate things just a little. The results of the needle biopsy confirming cancer were available and then, a real surprise – I had to choose what treatment path I wanted to follow! Well the choices were:
1 Lumpectomy and radiation and/or chemo depending on test results on lymph nodes – day surgery and 1 week recovery.
2 Single mastectomy (radiation and/or chemo might still be required depending on the test results on lymph nodes but high possibility they won’t be) – 1-2 days in hospital and 1-2 weeks recovery.
3 Single mastectomy and immediate reconstruction and again, depending on test results on lymph nodes, radiation and/or chemo but likely not needed – 6-10 days in hospital and 10-12 weeks recovery.
The results of all the above treatment are the same – positive and likely cancer-free. Hmmm well, I am not so sure about this choice lark, life is much easier when someone tells you what to do, however I can’t deny the feelings of empowerment that go with having to make that decision.
Note 3: Understand that it is impossible for anyone to give you all the information at once. Each step of the process provides more information which may mean a change in treatment direction. For example until some lymph nodes are removed during surgery and tested, there isn’t clarity about spread and therefore whether radiotherapy and/or chemotherapy are required.
I have a personal reluctance to undergo radiotherapy unless it is essential and so mastectomy and reconstruction to me felt right. However, as I won’t be sure I do not need radiotherapy until after the surgery not having all the information slightly blurs the decision-making process. Losing a breast is a big deal to every woman; some are able to be more pragmatic than others and some can’t envision it at all. For me it is hard to envision. Our relationship with the different parts of our body is very personal, complicated and longstanding. I am finding this decision to remove a breast very challenging so this has also contributed to my wish for a reconstruction.
So I am clear, a mastectomy and reconstruction it is but then the next surprise – I might not be a suitable candidate! Breast reduction surgery nearly 20 years ago has of course left scar tissue which might have an impact on this surgery. Then there is whether the reconstruction material comes from your back (which could make things difficult for me who swims for exercise) or from your tummy – now for me that is appealing. The thought of a tummy tuck to make up for losing my breast has considerable appeal! However two abdominal operations, one a caesarean for a breach birth of my first baby, mean further scar tissue and adhesions so that, too might not be suitable.
Another “Hmmmm, well then what?” moment! The NZ Cancer Society offers up to three sessions of counselling for those with cancer and so I took advantage of one of those sessions and talked this through. Not an easy conversation when it became clear that I just did not want to think about a Plan B as the thought of totally losing a breast was just too hard. We delved around with that for a while and it was really helpful. I have still not yet made up my mind on Plan B. There is always another option of a double mastectomy and using prostheses for symmetry. In addition there is the visual aspect of only one breast and I am hearing from older family members that one breast can lead to a lack of physical balance when older and frailer. If I am not suitable, these decisions may have to be made but I still have some time – I will keep thinking.
This is a pathway which at times will be rocky, at times smooth, at times struggling steeply uphill and at others flying down the slope with the wind in my hair and the sun shining. Charles is having his fourth hip joint replacement on February 12 and we are looking forward to him being pain free and more able to do the physical activities he likes best – cycling and walking. We have a goal of being at Exec Sec LIVE Conference in Johannesburg February 2016, well, fit and able to participate in everything.