Cancer research is (in my view) one of the most important research areas in medicine and there are always numerous ongoing medical studies. Since I couldn’t be a researcher, I decided (even before my GP sent the referral) that I wanted to contribute to such a study if possible. All successful cancer treatments have at one time been a medical study and I wished to contribute to those who will get the diagnosis in the future.
On January 1st, 2015, a new packet stream for breast cancer patients was implemented in Norway. If a tumourish suspect mass is found, the patient is to be diagnosed within two weeks of referral and a treatment schedule is to be determined within the next week and treatment is to begin within 4 weeks of referral.
Human medical testing is strictly regulated in Norway. A patient is to undergo much testing and is not to be in danger of inferior treatment, which means that as a wannabe guinea pig, I knew that if there were any studies I would part of I would still be getting high quality treatment – as well as a more rigorous testing regime.
January 16th
Appointment with GP. I have to say, my GP is the best in the world and totally perfect for me. Without him I would have given up my “hunt for medical answers” a long time ago. He told me about the packet stream, sent a referral, told me to call the hospital in the morning and then we had a good laugh. Actually, we had several. He’s been my GP for so long, through so many weird symptoms, that he knows that this is just another bump in the road for me.
January 20th
Mammogram, ultrasound and needle biopsy at Ahus. I’ve had a lot of tests done at Ahus earlier, including two muscle biopsies in my shoulder. I’m also quite certain that most patients start off with a “You can tell me anything, I can handle bad news” when in reality they’re not ready for it.
But being me means chitchatting with the medical staff and how else to build trust than to talk about all the testing I’ve been through at Ahus. The doctor warned me that the biopsy would hurt, I pointed to my shoulder and replied that I’d had two and I did not expect one tiny needle to hurt in the least. I also told them about how I, at my second biopsy, was the model patient and had also explained to the surgeon and the doctor students why I was so relaxed about the procedure (they were worried I’d passed out because I was so relaxed).
So he told me that the tumour was 4 cm and that I would probably need radiation and surgery. My rebuttal was “OMG what about chemo? I want chemo!!!”. He was a bit surprised by that outburst, but as I had explained why I’d had so much testing done, he was quite understanding of my situation and said that treatment plans were up to the doctors and I would just have to wait and see.
The best news was that he couldn’t find anything in the lymph nodes, meaning no metastases (yet). I wasn’t surprised seeing as this tumour is so fresh and it normally takes some time for it to extend to the lymphal system.
January 30th
Breast MRI, new ultrasound and needle biopsy. The breast MRI was weird. I’ve had quite a few MRIs and they’ve all been pretty much the same: lie in a tunnel, be happy you’re not claustrophobic, close your eyes and sleep. Or at least marvel at the noises. This one – there were some weird vibrations, a bit like electrical pulses, not uncomfortable just – weird.
By this time the mass seemed to have doubled in size. As there had been some problems with the first lymph biopsy they wanted a new one, and as it was the same (excellent) doctor as the first time, I told him that it was much, much larger, so he did an extra ultrasound. A long ultrasound.
This time his lips were sealed in regards to the size. I didn’t push.
January 31st
Appointment with doctor at the breast clinic. My first meeting with a doctor! I think that the patients of the Breast Clinic at Ahus are allocated the most resources. I have as yet to meet someone I didn’t like at Ahus (which says a lot about their staff) but everyone there was super sweet in their bright pink jackets. I was introduced to my co-ordinator and “my” nurse and given lots of phone numbers in case I needed or wanted to talk to someone.
The doctor was also very nice and sweet and explained a lot (and omitted some information, she wouldn’t talk about the size either). We talked about cancer history in my family (none). She did an exam and pointed to my numerous spider veins on my bosom, counted 24, and said that they (unilateral naevoid telangiectasia) were typical of massive estrogen excess. As I’d already deducted that this tumour had to be hormonal, she told me that this was most probably an estrophile tumour and there was a research project (whereupon I immediately told her I was interested) where the treatment was based on shutting down hormone production and thereby starving the tumour.
I told her that I was planning to ask if there were any medical studies I could be a part of, and explained that I was interested for two reasons: curiosity – being a science project is almost as fun as being a scientist – and that I feel indebted to all who have been guinea pigs before me and that this is my way of ‘giving back’. I also told her that I’ve already donated my body to science (when I die).
She did say the magic words “chemo, surgery and radiation” at which I cheered, she said the tumour was > 5 cm and therefore they automatically do a mastectomy so I asked if they could make it a double at which she told me I’d have to ask the surgeon!
February 2nd
CT organs. Every cancer patient is checked for metastatis (ie spread from main organ to other organs). Metastasis in breast cancer patients usually starts in the lymph nodes (mine were clean) but to rule out the breast tumour originating from someplace else, other examinations are performed. One of them is a CT abdomen to check the organs. This was done at my local hospital. Not saying that they are inferior, but they do far less needle work and therefore are not as gentle as at Ahus. When the nurse warns “You will feel a slight pinch” brace yourself cos it’s not slight and they usually go on a fishing expedition in my veins with the cannula.
The nurse was also quite grouchy because there had been a breakdown in communications so I met at 8 am with a full bladder, only to be told that I was supposed to have come there at 9 and then start drinking a litre of water. Miscommunication is not my problem, nurse, and being bitchy about it won’t resolve anything. Maybe that’s why she jabbed me.
The only reason I mention her is that she’s the only nasty person I have met to this day. All others have been nothing but nice, kind, gentle and sympathetic. Regardless of reason for the examination, and how crap your morning was, as a patient, I expect that one should always be treated with courtesy and respect by medical staff.
February 3rd
Friday was a stressful day. I also have marginal periodontitis (in prior years, I was an avid collector of stupid, horrible diagnoses that have no cure, need loads of treatment every single day and still give me horrible outbreaks; including herpes simplex/cold sores, prurigo nodularis, chronic latent shin splints/medial tibial stress syndrome (MTSS) and jumper’s knee/patellar tendinopathy in both legs).
My coordinator called and told me I would probably be starting chemo on Monday. I spoke with my periodontitis clinic as my perio surgeon was quite clear that I needed to see my hygienist at least twice before commencing chemo and they could fit me in Monday 2 pm, after an already long day at the hospital and before chemo – I was dreading Monday…
February 6th
Skeletal scintigraphy (bone scan), appointment with oncologist, dental hygienist, and possible start of chemotherapy. Having played around with scientific gadgets for some time I was thrilled to hear I had a date with a sparkly new toy! Sparkly and new for me. Actually, I was almost sparkly, as it uses Technetium-99 to check for skeletal metastases.
As the first set of blood work was at 7:30 and with the possibility that I was starting chemo in the afternoon, I had spent the night at a friend’s place and she was my support person (SP). Which was good, sometimes one needs someone to make you guffaw with laughter over nothings.
The radiology waiting area had some weird wall poetry (random words in short sentences that make no sense, scribbled on walls, but I think it’s a hip thing) and gossip magazines (SP and I had discovered that we have no knowledge of current Norwegian celebrities and looked forward to doing som reading/research).
It was a bit disappointing, really. Getting the Tc-99 didn’t make me feel more sparkly, I didn’t glow in the dark, and we realised that we didn’t recognise a single non-Royal celebrity in the mags.
But we did have an awesome time with the oncologist. She is absolutely amazing and I am so lucky to have her as my specialist! We had some small talk (how was I feeling, did I have any questions, had my breasts always been so lop-sided, all my tests were perfect) and then she said “We have this study that you might be eligible for…” “I know! I want in! Where do I sign?”. She looked slightly surprised, found a stack of papers, explained that I could take them home and read them and then decide whereupon I grabbed a pen, leafed to the last page without even reading the title on the first, and signed.
You can’t do two things at once, so it was good I had my SP who could watch the doc’s expression which apparently was priceless. Too bad I missed out on that one. I’d already made up my mind so why wait? I’ve always wanted to do something like that! Signing that document also meant no chemo yet, instead an extended biopsy of the tumour cells was necessary to decide which treatment arm I was to be administered.
February 9th
Deep biopsy is similar to a muscle biopsy in that large chunks of flesh are cut out of your body and used for various tests. “Large” being a relative term, but cubes of approximately 5 mm are cut out and examined closely. The surgeon was very nice, telling me how I was the “talk of the town” (town being the interdisciplinary board in charge of the PETREMAC study at Ahus. They like my feisty, positive attitude, they certainly aren’t used to anyone being truly positive to a cancer diagnosis (one of the nurses even expressed her surprise and said that she’d never heard anyone be happy about it before) and have high hopes for me. Which is good, because that is what I was aiming for.
Warning! If you don’t want to read details about the surgery, please skip the next paragraph.
The biopsy itself reminded me slightly of the muscle biopsy, but instead of feeling as if someone was trying to stir something solid inside my shoulder, I could feel snips where the surgeon cut out pieces of the tumour. I was glad the nurse had recommended I take 1 gram paracetamol before the surgery… as I lay on the table, trying not to talk while she was cutting, I thought of all the leaves, stems, roots and other materials I have dissected fungal and bacterial tissue from to cultivate in labs. My mind wandered on to one of Tor Åge Bringsværd‘s earlier short stories, En hjertesak, and then ended at Animal Farm. As always, I am impressed by the way the mind finds context in the oddest places.
The surgeon said she would try to make the scar as small as possible. I replied that my modelling days were long gone and managed to keep a straight face long enough for her to wonder if I seriously meant it. Then I laughed, and told her that it was very sweet but since I was having a mastectomy it didn’t really matter that much and besides, I already have visible scars so I wasn’t too worried. She laughed with me at that. She also told me that the tumour was 8 cm, not exactly a surprise to me.
The samples were sent to Haukeland sykehus in Bergen, where the head of the study is seated, and the results could take up to three weeks to process. I’m a patient person when I have to be. Knowing that the doctors weren’t stressed about me getting meds asap makes me confident that I can safely wait three weeks.
Feb 22nd
As part of the study, I get to take a gazillion extra tests to make sure they have plenty of medical information to compare before and after. One of these is a myocardial perfusion scan so I got to be radioactive again! Two doses this time. As I didn’t have my SP with me, I was hoping to find some kind of gossip magazine to try to get up to date but they’d all disappeared. Instead, I found a really sweet, completely non-PC book from 1984 where it was obvious that the authors had a cat that got pregnant and decided to take loads of photos and make a book. You’d never get such a book published today, it was all about letting the cat run free and have it with numerous back alley cats, they praised the kitten who caught a mouse and looked forward to the next litter…
The scan itself was rather boring (no fancy noises) but when I turned on my phone when I was done, I realised that one of the study nurses had phoned me. And what great news! They had received the biopsy results and I was all set for treatment arm A. Could I come in the following day for EKG, blood work, meds, shots, talks with medical staff and such?
Wow. Game on. Show time.
