I felt as though I was going to my second home. Walking down the halls on Level 5 brought back a flood of memories, including the chemo shots in my lower back at 10:30pm at night followed by folenic acid to ‘treat’ this life threatening condition and our second angel baby Seanain. The orderlies and the tea lady Rosemarie greeted me like a long lost friend. We caused an almighty ruckus at the reception desk – hugs and kisses and memory bantering whilst my very thick and weighty file was being prepared for this morning’s oncology clinic. Goodness knows I had spent enough time there whether it be through the birth of my two beautiful kids, my two angel baby ectopics one resulting in a week of chemo treatment or total abdominal hysterectomy, take your pick, Over the past 4 years (and 6 months prior to the birth of our son) I have been there on almost a yearly to 6 monthly basis. I have friends in strange and wonderful places 🙂 Level 5 Oncology is no exception :)
The kids were downstairs in what they called “Hospital Kindy” and were having a ball. So it was hubby and I waiting in Onc. Nothing drives me round the bend more than be greeted by the Head of Oncology and asked “What can I do for you today.” Lets take a moment shall where, where do you want me to start!!!!!! A guarantee would be nice, could you throw me one of those please? Or, what about “lets start from the beginning shall we?” he he
I had the wonderful opportunity to review my file and was given a copy of the 4 page pathology report which is sitting here right in front of me and of course no guarantees.
The first question I asked was – do we know for certain as to whether it Epithelioid Trophoblastic Tumor – ETT for short) was definately benign or definately malignant?
The short answer is no. As I am the 4th documented case IN THE WORLD *sigh* (the other ladies preceeding me as documented in the medical journal articles are as follows one had a TAH (Total Abdo Hyster) and was ok. Another documented case had it initially treated using other methods but relapse and treated with Chemo and TAH and was ok and the other one was treated, the ETT was a choriocarcenoma – and it was aggressive and henceforth, she died) the upshot of it is, we dont know how it is going to pan out. They suspect that it may be benign but they are not prepared to wager any bets because it can change. That is, it can start behaving like it is benign and then present as malignant which makes the ETT extraordinarily difficult to treat. We don’t know if there are any cells left over, even though the PET scan at Peter Mac indicated no spread - hence the frequent blood tests.
The second question I asked was – how long will it be before we can finally rest assured that I am rid of any traces or any possibility of it returning – hence ,no more frequent blood tests.
The answer – 10 years. (This, ladies and gents was where I tapped my husband’s thigh which was his cue to ensure that my ears weren’t full of wax and that I wasnt hallucinating he he.) Whilst she went out of the room to photocopy my pathology report – my husband and I had a serious and heartfelt discussion – what are my intentions, would I be able to cope with the testing over such a long period of time. What was my personal aim or motivation? – my aim if you can call it that, is to be around for the children and my husband as long as possible. It is as simple as that.
Hence, the plan that the Head of Oncology implemented:
1. Year 1 – blood tests every 4 weeks
2. Years 2 & 3 – blood tests every 8 weeks
3. Review pathology – if all is ok and no changes have presented…
4. Years 4-6 is every 12 weeks
5. Review – dependent on changes in pathology etc.
6. Years 8-10 every 3-6 months
The medical articles I read with these other cases indicated that those who had relapsed did so after and between 5 months and 36 months. post treatment.
Next question- how did this all start?
Reading through the pathology report together. It is indicative that – they dont know. Although there are some suggestions that indicate that it was pre both ectopics. Pathology done on both ectopic samples indicates that the pregnanies (cell make up etc) were dipliod which means they were ‘normal’ – just in the wrong place.
So live goes on - giving the slightest chance and I am grateful for what I have - I have my answers now and the ghosts dont haunt me as much anymore.
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.