cervical cancer

Just another health scare?

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In June I found a small lump in my groin cos it hurt.

I didn’t want to deal with it, attributed it to walking into a tree or falling on my arse or bumping into something stupid and tried to forget about it.

Couldn’t forget about it in September when it started hurting and had grown – massively – and kept growing.

A fun side effect of cancer is that you’re more prone to getting cancer again, and the lovely Tamoxifen that I’m on has cervical cancer as a probably side effect. Fuck, not cancer again???

Couldn’t get hold of my GP so went to the ER and got an ultrasound (I know the drill by now) and tech/doctor says “You need to be referred to oncology”

Still couldn’t get hold of GP so called another doc and said “I need a referral, that’s all I need from you, send me to onco and I’ll be out of your life”

Had a lovely holiday in Lo Pagán, Spain, apart from the fact that I got some kind of weird sun rash – it wasn’t red, didn’t itch, wasn’t a sun burn, just weird blisters which disappeared after 24 hours but came back if I didn’t use sun block.

Got home to a nice visit at haemotology at Ahus. “We’re gonna do some bloodwork and a biopsy and a CT and see where we send you next”

Biopsy first. Fkn stupid surgeon. “I can only see pus, are you sure it isn’t an ingrown hair and sebacous gland?” YES we did an ultrasound so do your work and stop being a fkn twat “ok I’ll see if I can find something”

Date with a doctor at Infectious diseases was nice. “So, we’re pretty sure this isn’t lymphoma but the CT was kinda weird so we’re referring you to a gynecologist also sending off tests to Sweden for Bartonella cos I never get to do that cos it’s expensive but you’ve got the syptoms and we’re also testing you for tularemia because of your tick bites”

She called me last week. I have tularemia – rabbit fever – hare plague (harepest) in Norwegian – from a stupid fkn tick (who are all over me since chemo cos apparently I’m now irresistable). Mortality rate is pretty high in the US but not that bad here in Norway.

“We’re still awaiting some test results but at least we have a cure for that!” so she puts me on ciproflaxin which is a new antibiotic for me and the nice lady at the chemist told me that it could be pretty hard on the stomach so important I eat and take the pills twelve hours apart – as on the dot as possible – and I should really read the instructions.

Most of the instructions are “If you have this side effect, contact a doctor IMMEDIATELY, do not pass GO, do not wait an hour, get your ass to the ER ASAP”

"Ciprofloxacin is a fluoroquinolone (flor-o-KWIN-o-lone) antibiotic, it is used to treat different types of bacterial infections. It is also used to treat people who have been exposed to anthrax or certain types of plague. Ciprofloxacin extended-release is only approved for use in adults.

Fluoroquinolone antibiotics can cause serious or disabling side effects that may not be reversible.

Ciprofloxacin should be used only for infections that cannot be treated with a safer antibiotic.”










Turns out, this is top notch bad shit fucking horrible side effects. Anorexia is a new one for me but it’s actually kinda nice to not eat and not be hungry and not want to eat apart from the whole “you must eat before you take the pills”. I shouldn’t drink coffee (that’s not happening) and insomnia is kinda wild – again – ffs





The worst side effect though is probably the “your mood might turn a bit negative”. Fuck that. These pills are fucking screwing with my head in the worst ways possible. “A bit negative” doesn’t work when you’re as fkd up as I am. My mind is never in any kind of state where it can tolerate “a bit negative” cos I crash completely. If you think I’m ignoring you, I probably am. Not in a good head state right now. Actually in a pretty shitty one. Wrote this yesterday. It’s not pretty so don’t read if you don’t want to.





It’ll pass. It always does. My 80 hour Marshalls are on most of the day cos  I relly need to drown out my screaming brain but Nick Holmes is with me and keeping me kinda sane. Thank fuck for Paradise Lost. 





Gynecologist was a bit “It doesn’t look right but I’ll take some tests and let you know” so still waiting for results from a few tests. Fuckit.

			

	
		
	


				
					


	
	

		
Norske kreftstudier


				

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Som tidligere nevnt finnes det til enhver tid mange studier/forsøk man som pasient kan være med på. Her finner du oversikten over godkjente kliniske studier i Norge.


Om du er bekymret for kvaliteten på behandlingen da, er norsk lov veldig klar: som studiepasient skal du ha minst like god behandling som konvensjonell. Dersom du ikke responderer tilstrekkelig på forsøksregimet skal du tilbake på konvensjonell behandling. Om du på noe tidspunkt føler at du ikke har god nok behandling, kan du avslutte din rolle i studien.


Lurer du på hvordan utprøving av medisiner faktisk skjer? Det er fire hovedstadier, som beskrives enkelt og greit her. Generelle forskningsetiske retningslinjer er også ganske forståelige.


Forskrift om klinisk utprøving av legemidler til mennesker sier:




En klinisk utprøving kan bare igangsettes dersom “det kjente nytte- og risikoforholdet er veiet i forhold til den antatte gevinsten for den enkelte forsøksperson og for andre nåværende og fremtidige pasienter”




Lov om medisinsk og helsefaglig forskning (helseforskningsloven) sier:




Forskning på mennesker kan bare finne sted dersom det ikke finnes alternative metoder som er tilnærmet like effektive.


Før forskning på mennesker gjennomføres skal det gjøres en grundig vurdering av risiko og belastning for deltakerne. Disse må stå i forhold til påregnelige fordeler for forskningsdeltakeren selv eller for andre mennesker.


Forskningen skal stanses dersom det viser seg at risikoen er større enn mulige fordeler, eller dersom det foreligger tilstrekkelige holdepunkter for positive og fordelaktige resultater.




Her er en liste over brystkreftstudier som foregår for tiden og er åpne for rekruttering:







Vi har alle hørt en eller annen skrekkhistorie om pasienter som får langvarige skader og smerter etter å ha deltatt i en studie. Selv med all verdens beste etiske retningslinjer så kan man ikke sikre seg 100% mot at noe går galt. Sånn er det dessverre når man tar tradisjonell/konvensjonell medisin også. Vi som har kreft vet at uansett hvor god behandling vi får, er det en mulighet for at vi får faenskapet på nytt – enten fordi kroppen vår er genetisk feilkoda eller som bivirkning av behandlingen (fjernspredning, underlivskreft av tamoxifen eller hudkreft av stråling er velkjente bivirkninger).








Det som (for meg) er viktig å huske, er at det er kvinner som har gått foran meg og vært med på utprøving av all behandlingen jeg får. Det er kvinner som har sagt “jeg vil være med og bringe brystkreftbehandling videre for at flest mulig skal bli friske”. Kvinner som jeg har den største respekt og er evig takknemlig for.



Deltagelse i en klinisk studie er, for meg, litt som å donere blod. Vi er fryktelig mange som ikke kan donere (for egen del – fordi jeg “tilbragte mer enn 12 måneder i Storbritannia totalt mellom 1980 og 1995”) og det er mange som er livredde nåler og blod og som ikke donerer av den grunn. Det er ingen som har noe med hvorfor man ikke donerer – og om du velger å delta i en studie eller ei er også helt og holdent din avgjørelse.

			

	
		
	


				
					


	
	

		
Hormonal bitch, anyone?


				

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I’ve always had hormonal issues, which is why my GP put me on Diane/Dianette som 20-odd years ago. It’s an estrogen emitter which has somewhat alleviated my androgen hormonal issues.


But even taking estradiol on a daily basis, my estradiol levels have always been extremely low. Looking at my blood work for the past decade I’ve always had 0.1-0.2 when my levels should have been >1.0.


According to Dr. A-hole (more of him in a blog to come) my tumour was probably mostly progesterone sensitive rather than feeding on estrogen, which makes sense – why would I get a humongous tumour that feeds off a hormone I hardly produce?


I’m taking tamoxifen now, and will be taking it for the next ten years. Tamoxifen (if you read those older posts) inhibits the production of estrogen thereby reducing the risk of a new estrogen-sensitive tumour, which is great! If your tumour fed off of estrogen to start off with.


In men, tamoxifen can be used against infertility and increases testosterone production.


Women treated with tamoxifen have been found to develop primary tumours elsewhere in their body (though a link has not been found – though I doubt if anyone has done much to look for it).


After starting on tamoxifen in December, I’ve been growing a beard. That hair is growing much faster and better than anywhere else on my body. Stressing as I was after talking to Dr. A-hole, I asked my nurse about this. She checked with an oncologist and could tell me that this was a perfectly normal side effect of tamoxifen.


So basically, my hormonally crazy body which has always produced too many androgenous hormones (progesterone and testosterone) is now producing even more of them.


Guess what. “However, PR action in breast cancer is grossly understudied and remains controversial.” (PR: progesterone receptors). “women with high testosterone serum levels appear to be at a significantly increased risk to have or to develop breast cancer within a few years”


“Premenopausal concentrations of testosterone and free testosterone are associated with breast cancer risk.”


Am I scaring you yet? I’m certainly scaring myself here.


Basically, I had a hormone-sensitive tumour which most likely wasn’t estrogen-sensitive but rather androgen-sensitive because my stupid body has always produced loads more androgen hormones. I am currently on a medication (that I am to take for the next ten years) that decreases estrogen production (a virtually non-existent production to start off with) and increases androgen production (if hirsutism is a common side effect, then increased production of androgens is the cause and therefore another side effect).


I am on a medication that is increasing the hormone imbalance in my body, the very same imbalance that gave me the darned cancer to start off with.


I’m no doctor, but that sounds more like they’re increasing the probability of me getting breast cancer again – or cervical cancer (which is a well-known side effect of tamoxifen).


I have my first set of check-ups in June. Unless I freak out completely before that and demand a full blood screen and appointment long before. At least I have sufficient grounds to demand a mastectomy of my so-called healthy breast. I don’t believe for one second that it is, or that I won’t find a tumour there in a year or two…


Stress levels and heart rate rising – AGAIN – here’s some stress-relieving, comfort music: