C is for..............
It's certainly been a busy week.
Monday was the colonoscopy and endoscopy. It was done at the same place as I have been having all my other treatment. The reception staff now know me by name, which in my opinion is never a good place to be! They joked that I was trying to visit every department in the hospital. Not willingly I would like to add. The whole thing wasn't as bad as I thought, probably because the drugs were bloody amazing! I was also able to watch on a TV screen in front of me and see my innards, which was absolutely fascinating in my drug induced haze. To give you an indication of how OK I found it, they started with the endoscopy, then the colonoscopy. At the end of the colonoscopy I asked when they were doing the endoscopy. They'd already done it.
Back to the room to recover for a couple of hours and more importantly to eat. I hadn't eaten since 8am the previous day and by this time it was around 4pm so I pretty much ordered everything on the menu and scoffed my face.
The consultant came to see me before he left for the day and said that they hadn't seen anything untoward with the naked eye, but had taken a number of biopsies and would need them to come back before we drew any conclusions. Again, a wait of about a week for these. I felt silly asking, but I did ask him if they were looking for any evidence of the cancer spreading. They weren't as they hadn't seen anything at all to suggest that this was an issue. My little cancer demon sat on my shoulder who is always there disappeared in a sulk for a while. Needless to say he is now back.
Tuesday was my appointment with my consultant oncologist in the evening. More general acknowledgement by the reception staff (these appointments are in a different place to the one the day before). We discussed a number of things, starting with the surprise of the repeated lumpectomies and then mastectomy, plus the fact that there were more tumours than originally suspected. He also expressed surprise and concern. We talked about the fact that the original tumour was somewhere between 5 and 8cm (depending on which report you believed) and that depending on how the tumour had responded it wasn't unusual to find residual cells hanging around. We asked about why these didn't show on the MRI, which only showed 1 residual 1mm tumour. I'm not really sure we got to the bottom of this. We also talked about 5 lymph nodes being diseased rather than the 3 originally suspected. And that was 5 lymph nodes after treatment, so obviously more than 3 were originally diseased. Again, the MRI before cycle 5 showed that there was no disease in my lymph nodes. All of this obviously means that the prognosis is not as good as we thought it was as it is a fairly simple correlation between amount of disease and reoccurence/progression. In light of this "more extensive disease than originally expected" and "less effective response to chemo than originally thought" new suspicion has been cast on the nodules in my lungs. In short, we are now back to suspecting once more that they are metastatic cancer.
After that blow, came my confession/explanation that I had been and sought a referral for my GI issues. He already knew as it was in my notes. We talked about stopping the drug that he thought was causing it, again. He said that if nothing came up on the biopsies he would be stopping it. We both objected. Especially in light of what we had just been discussing.
We moved on to talking about radiotherapy. In light of the new information from the biopsies, this has been upped to warp level. I will have the chest wall/breast, neck lymph nodes and internal mammary lymph nodes radiated. The last of these sites is only added when the benefits outweigh the potential risks, which they do in my case. Because my cancer is left sided my lungs and heart are likely to sustain some collateral damage, particularly from the internal mammary lymph node radiation. Quite frankly the way the conversation was going a little bit of lung and heart disease in "later life" didn't really seem too much of an issue! I need to have a planning CT scan in the next few days. Whilst we are doing this we will also look at the lungs again as they have to give me radioactive contrast media for the planning scan so might as well look whilst we are there rather than exposing me to further radioactive contrast media.
Next topic was about the medications I will now need for long term maintenance. I was offered a choice to go the gentle route or the all out aggressive route (more side effects, better long term outcomes). Typically I chose the more aggressive route and will therefore need to see the GP to get them to start a monthly injection and a daily tablet to stop me producing oestrogen which is fuelling the growth of my cancer. The collateral damage here is that I will immediately be thrown into full-on menopause. Still, as a couple of friends have commented, better hot than dead (#BHTD).
I shared one of my thoughts with the consultant that has been going round in my head recently. I haven't made the final decision yet, but have been thinking about a second mastectomy. Obviously this only makes sense if/when we have confirmation that my lung nodules are nothing more than a pain in the arse. Apparently there is limited benefit of a second mastectomy and therefore it isn't recommended. The only time it would be considered would be if there were a psychological risk to the patient by leaving it. I said that I felt that was the case for me, partly because there was some suspicion of non-normal cells in the other side, which paled into insignificance with the tumour on the left side. Plus, I can't get the fact out of my head that there were 3 tumours on the left side that turned up at biopsy but didn't show up on the MRI. That and a large area of pre-cancerous cells that up to that point had not been seen on any test/original biopsy. He made a note on my file and we will return to it when I see him again in July.
We went home a little dejected and despondent. It would appear that this is the rollercoaster ride that just keeps on giving. I couldn't sleep at all that night and so spent some time reviewing the clinical data behind the drug he wanted to stop. Sobering stuff. If it is in my lungs then this drug gives me an extra 16 months survival (41 months vs 57 months). Obviously we dearly hope that isn't the case, but this is the reality of the situation. I ended up writing my consultant an email pulling every trick in the book and asking him not to stop it.
Wednesday was a tough day as the news sunk in. I was twitchy every time the phone went and checking my emails to see if there was any response to my email. I got a call from the gastroenterologist at around 7 in the evening. The biopsies had been pushed through and were back. They had found something - late onset Coeliac disease. I could have kissed the man! He did respond by saying that it wasn't very often that patients were delighted when told of their diagnosis. He knew what was at stake for me and offered to call my oncologist. Apparently the pathology was quite severe, so I am now on a strict gluten free diet.
Ironically, Coeliac disease is an autoimmune disease where the immune system mounts an inappropriate response to (in this case) gluten. My immune system in the presence of gluten attacks the lining of my small bowel, stopping me absorbing pretty much everything and giving me horrible diarrhoea. The irony here is that whilst my immune system is busy over-reacting in my gut, it has been very happy turning a blind eye to the cancer cells having a complete and utter party in my breast. Ho hum.
It does mean that I can continue on the other drug though, so actually I'm really pleased. I live to fight another day x
Shiiiit! And I thought my week had been quite challenging, at least I can eat pies. The good news is that there's no gluten at all in prossecco... or cheese. Cheese and wine party, that's what you need to keep your spirits up. Sending you massive hugs all of you.
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