recurrent cancer

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:

Breast cancer is a gift for life. And death.

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It’s October, which means it’s Pink Ribbon Month, Breast Cancer Awareness Month (for your national wesite, check out NO, UK, US). In Norway the focus this year has been on long-term effects of cancer treatment. Guess what – a large percentage of women who have undergone breast cancer treatment never return to the work force.

And guess what else? The number of cases are under-reported and most of these women feel shame because they are unable to return to the activity levels of their previous job & personal life.

The Norwegian Directorate of Health/Helsedirektoratet have made a nice report of potential long-term side effects which can be found here (downloadable pdf); it’s in Norwegian.

Not because they don’t want to, but because somewhere along the line, they got some unpleasant side effects that turned out to be irreversible. I’ve already mentioned CIPN. CIPN can actually appear up to two years after end of treatment, can appear in women who weren’t bothered by neuropathic pain during treatment, and can be completely debilitating.

F(l)atigue can also turn chronic. Fatigue sufferers often find themselves ridiculed as lazy. They often receive little or no understanding for lying on the couch or in bed all day.

If you’re one of those people who call fatigue sufferers lazy, please read my blogs about it again. And again. And again. Until you realise that no, we’re not lazy. We would feel like we’re dying inside except that requires thinking which again requires energy which WE DON’T HAVE.

I’m not even going to venture into the psychological hell that a (single/double) mastectomy can send any woman into. Or chronic alopecia. Me, I don’t care. It’s not the first time I’m a skinhead and I’m loving having an arsenal of wigs to play around with – but that’s me. Permanent baldness is still a taboo.

I almost forgot about chemo brain. It is an actual diagnosis, can start long before you actually have chemo, can last for years, and is a mental fog that just won’t let go.

“Doctors and researchers call chemo brain many things, such as cancer treatment-related cognitive impairment, cancer-therapy associated cognitive change, or post-chemotherapy cognitive impairment. Most define it as a decrease in mental “sharpness” – being unable to remember certain things and having trouble finishing tasks or learning new skills” (American Cancer Society)

If the tumour is hormone-sensitive and you get anti-hormonal treatment, menopause may set in prematurely. It’ll probably be worse than natural menopause (due to it happening much faster on drugs) and you probably won’t be allowed to get hormone treatment to lessen the symptoms. Even if the tumour isn’t hormone sensitive, you may experience early menopause.

Osteoporosis is also a common long-term effect but as it is a well-known effect, bone density is usually monitored.

These symptoms are diagnosible and are, at least medically, accepted as such. Docs may not know of any treatment that can help, but at least they can give you a black-on-white diagnosis to help with insurance and/or benefits.

But not all women get easy diagnoses. Some of them get a mixture. Light fatigue, enough to make looking after your grand kids a nightmare, not enough to make you connect the dots. Aches and pains all over the system. Complaining to friends and family doesn’t really help cos they think you’re lazy. You need to work out more, exercise more, get out more, it’s your own fault.

So you go for power walks four days a week and go to the gym four days a week and you just feel weaker, but everybody’s saying that you’re just lazy and need to up the ante, power walks seven days a week and the gym five days and you just feel more and more tired. Only thing is – aching muscles and joints is another long-term side effect, and no amount of exercise or bad-mouthing is going to fix it.

Oh, and make sure you have a good dentist and get a full check-up before treatment, during and after. Many women end up having to draw several teeth and that’s expensive if you can’t prove that it was due to chemo.

A common side effect of taxanes is having your nails loosen and fall off. Yes, that is a thing. They shrivel and fall off. They can keep falling off for at least a couple of years and it is as painful and uncomfortable as it sounds. The exact mechanisms are unknown, but using nail hardener and dark nail polish, just not on the part furthest down where the nail “breathes” may help. Or not. The problem with not knowing the mechanisms is that one can only assume that it helps – statistically, who knows. At least iut’s a good excuse to wear lots of fun nail polish!

After a mastectomy there’s also a really big chance that you will experience a lymphedema and/or reduced mobility in the shoulder/arm of the op. Physical therapy can help with the mobility issues – but some patients will never regain full mobility.

There’s also the probability that you’ll find a lump in your remaining, so-called healthy breast. It’s probably just a cyst or benign tumour, but you’ll most likely have to wait days or weeks to get it checked out – thousands of minutes in hell waiting to find out if it’s malignant or not.

If you’re unlucky enough that the tumour is in your left breast and you need radiation over your heart, you may be at risk of cardiovascular problems.

And there is a large risk of getting cancer again. Just cos you’re cancer-free doesn’t mean it’ll stay that way always. The meds may cause cervical cancer and/or endometriosis so annual pap smears and ultrasounds are a good idea. Radiation will make you more prone to skin cancer, so you’ll have to take extra care whilst sun-bathing and never ever use a tanning salon/solarium again.

Oncologists no longer say that you’re healthy even if they’ve removed every cancerous cell from your body. If you’ve had breast cancer, it’s a bit like being an alcoholic – you might not have touched a drop in 50 years, you’re still an alcoholic. You’re temporarily cancer free, and you will never feel safe from cancer ever again.

“Breast cancer can come back or metastasize (spread) in three general areas:

  • the breast area where the cancer was originally diagnosed; this is called local recurrence
  • the lymph nodes in the armpit or collarbone area near where the cancer was originally diagnosed; this is called regional recurrence
  • another part of the body such as the lungs, bones, or brain; rarely, the opposite breast; this is called metastatic or distant recurrence” (breastcancer.org)

25% of all women who have breast cancer will experience recurring cancer (cervical cancer or skin cancer as a nasty, long-term side effect aren’t “recurring” so those cases are in addition to the 25%). The good news is that we now have a lot of drugs and treatment regimes so even with metastatic spread, chances are quite good that you can live for many years with chronic cancer.

The bad news is that recurring cancer can appear many years after you were treated and labeled cancer-free.

The really bad news is that metastatic cancer can be difficult to catch, even with yearly check-ups, and the longer the cancer can spread, the greater the risk for it being terminal and not chronic.

Five year survival rate for primary breast cancer is 89% (Norway, 2006-10). The same rate for metastatic cancer is 20%.

So … early detection is important. Use the lemon chart and visit knowyourlemons.com as there is a lot of great info there. See your doc if you’re in doubt. Don’t think “It won’t happen to me” cos it can. Cancer doesn’t discriminate and it doesn’t matter how rich, smart, beautiful, funny, young or amazing you are – you still might get it.