You can keep the Tamoxifen, thank you very much, sir

04/12/2013 08:52

Two months since I last blogged. And I am still here! Yay! Anyway, I thought I had better write something. So here goes.....

I started the Tamoxifen. I knew it was probably a bad idea. But then this whole "cancer" malarky is a bad idea, so why change things now?

Seeing as my tumour(s) were super- oestrogen positive (go, girls!), Tamoxifen is the magic button. So anyway I started swallowing my little pill, once a day, 20mg of chemically induced menopause.  I expected the hot flushes and the night sweats. Already had them for several months due to the chemo, but they have proceeded to ramp up a gear. I hardly sleep for sweating. We invested in a chillow and acupuncture - which has had NO EFFECT whatsoever. These are trifling inconveniences, however, compared to the nausea and the shortness of breath, which has got progressively worse. 

I went to see the GP who prescribed me Metoclopramide - an anti-sickness drug which I had knowledge of whilst on chemo - and arranged blood tests and a chest x-ray. Chest x-ray all fine. Tumour markers all low. Bloods all good, apart from a slighter higher level of ALT - which is an enzyme released by the liver. All other liver function tests good (so not the wine then! Ha, in your face!) It is the Tamoxifen. It is very toxic. It causes liver cancer in rats. Just as well I am not a rat then.

So the GP was befuddled. I said, in my super-knowledgable way "I am sure it is just the Tamoxifen" She was inclined to agree with me, but could not advise me to stop taking the beastie. So I phoned the Breast Nurse and she said that they needed to check me over. Off I go to see the Registrar (my consultant was away. Boohoo!) The registrar was very nice. Very posh. He was confused about me. He had to consult with the Head Honcho, Mr K. He said sickness is a very rare side effect on Tamoxifen, as is shortness of breath. I said "Listen Mate, nothing has gone smoothly. You really think it's going to be the exception now! Of course, its the poxy Tamoxifen. What do we do about it?" (but I said this all much more politely, because he was posh). I then had a rant at him about how crap I was feeling, worse than I felt on Chemo. I didn't want to take the Tamoxifen anymore if this was how it would make me feel. I can't cope with it! And I asked if he could switch me to another drug.

He said I could stop taking it for a bit, but I would have to go back on it if I am not menopausal, so would need a blood test to check out my hormone levels ( I can advise that I am VERY CRANKY, VERY IRRITABLE and I DEFINITELY HAVE HORMONES!!!!!!!). And they would need to check me over, so I would be referred for a CT scan and a Bone scan. I groaned. I hate the scans. I hate everything about them. I hate the injections that make you feel funny. I hate the needle poking in me. I hate lying still, goddammit. But the worst thing and the thing I hate the most, is waiting for the results.  And although I wasn't expecting anything bad, I probably have good reason to worry.

Why, you say? The cancer is all gone. They hacked it out (several times) zapped it with cell-destroying drugs and stomped on it with Tamoxifen. There is no need to panic, woman, get a grip.  Well......

Doom and Gloom, sciency stuff......


(1) Even with a mastectomy, breast cancer can still return to the chest wall (mine was 2mm from the chest wall - pretty darn close).

(2) If cancer has spread to the lymph nodes prior to mastectomy, there is a higher risk of recurrence (local or distant). {Tick that box}

(3) Age at diagnosis - the younger (under 50) - the more aggressive the cancer. 

(4) The Grade of the cancer - Grade 3 (mine - yay in a very ironic, sarcastic tone of voice) being the most aggressive. 

(5) The Proliferation rate (KI index) - the higher the KI (anything over 20% is very high - mine was 57%) the faster / more aggressively it is growing.

(6) If the tumour overexpresses the HER growth factor it is growing more aggressively.

(7) The larger the tumour - anything over 2cm has a higher chance of recurrence (mine was 2.3cm).

(8) The position of the tumour - tumours in the lower inner quadrant of the breast (near the sternum) have a poorer prognosis and higher chance of recurrence (that'll be me then! Bugger)

I basically meet 6 out of 8 of the above risk factors. So that sucks.

Anyway, I have had the CT scan. Nothing untoward to report. I did not blow the machine up or anything.

Last week I had the bone scan. The radiographer asks if you have any bone problems/aches and pains and general info about your medical history. I mention all the breast cancer rubbish and the uncomfortable feeling that I have in my left rib area, and my bad back. I have had the injection, drunk my obligatory level of fluids (not wine, I should add!), emptied my bladder and returned three hours later for the Gamma machine. We are good to go. I have the 30 min scan. Its a long time to lay still with  a straitjacket contraption thingy wrapped around your arms - its that to stop you going failing off like a whirlygig or something??

The radiographer says she has to do a more detailed scan on the chest / abdo area. The left side. Where my ribs feel funny. Okay, so this is when I start to panic - internally of course. Being British, and brave, I just nod my head and say "Oh OK".  I go back in again and she looks at the scan in detail with her colleague. I am really starting to panic now. I say "Look, I know you are not allowed to say anything. But I have had breast cancer, and it has spread to my lymph nodes. I had chemo which didn't bloody work. And loads of ops to get rid of the buggering thing. If there is something there, just tell me. I can't wait weeks to hear back from the consultant! I can take it. Just tell me!"

She tried to reassure me. It was all ok. There was a "hotspot" which looked like something on my rib at first. But it now appears to be my kidney. This is an anamoly. Soft tissues / organs should not show any uptake on the scan due to the type of radionuclide they inject (it only glows with the bones, basically!). In very rare cases, it does not leave the kidney completely (I probably did not drink enough or something) and this is what she thinks she saw. However, it still needs to go to the conulstant to be reviewed, along with the CT scan (of which I know nothing). And he will confirm the findings along with the radiographer when I see him next week. So I am a bit worried. Probably unnecessarily so. 

I worry all the damn time that the bastard will come back. And anyone who says different is a GODDAMN Liar. Because Breast Cancer is insidious. It can come back anytime it chooses - 2 years, 5 years, 10 years whenever it pleases. And all of us with a BC diagnosis have to live with this hanging over our heads. So everytime I have a blood test, or a scan, or a checkup , or an ache, or a pain, or feel crap (which is basically like all the time) I panic.  

So roll on next week when I see Warrior Prince. Hopefully all will be good. All will be well. He will reassure me it is the Tamoxifen making me feel so lousy. But I will have to go back on it again. The half-life is only about 2 months so after Christmas I will have to start popping the pills again.

And my tattoo is being rescheduled. An emergency has arisen and I won't have it done before Christmas now. It's been put back to February 2014. I am not that bothered really. I wasn't really looking forward to them poking about there again. And it will never look the same - not like a real boob anyway. So I can wait. 

And we are looking forward to Christmas. Although we have to go through the long-drawn out horror that is chemo, this time with Alex's mum. We said the stalker wouldn't leave us alone. Damn, I hate being right!

Sorry for the doom and gloom bullshit. I would blame it on the Tamoxifen (did I mention it causes anxiety, mood swings and depression too?) but I am not sure I can in all honesty. I am not depressed, or down really. Just realistic. To hell with optomism. 

Thank god I have my family, my friends, my dog and my music to keep me going!