Finally, after a wait of one month after the tumor was discovered, I got to see an oncologist at the Royal Prince Alfred Hospital. The delay was brought about, partly by it being the holiday season and partly by some mishandling of the referral by various parties.
It was a harrowing afternoon’s business.
We were introduced to a very pleasant team of specialists, each with a role to play in the management of my condition. They included the oncologist (the professor), his registrar, a general clinical nurse to consider various aspects of my care from the point of view of several disciplines; and a clinical trial nurse who will help manage my involvement in a clinical trial, should I choose to participate in one.
The professor laid out the brutal odds. Only 15% of people with my condition will survive 1 year after diagnosis if no treatment is provided. If treatment is provided then 50% will survive 1 year.
In the second year, only 5% of those untreated will have survived and 25% of those who are treated will survive.
After 5 years, effectively 0% of those untreated will survive and a little less than 10% of those treated will survive into the next year.
There are a small number of people who for some reason survive longer than indicated by these figures.
It was made clear to me that the treatment is optional but most people of my relatively young age would choose to undergo treatment. The main treatment under consideration at this point will be chemotherapy. The two main drug options are:
In addition, I could elect to volunteer to particpate in one of two currently available clinical trials.
The first available trial, conducted through Asian oncologists involves supplementing one of the two chemotherapies with a second drug tarceva. Tarceva has previously been used only cancers that have advanced without responding to traditional chemotherapies, but apparently because of its success in this context it is now considered worthwhile to trial it as an additional component of an initial chemotherapy program.
The second trial which is a more widely international trial, involves the supplementation of the carbolplatin chemotherapy with a second drug called taxol. Taxol is thought to stimulate the immune system’s response.
In either of the two clinical trial options, I would only have a 50% chance of receiving the supplementary therapy and would otherwise would receive a placebo in the first case or no treatment in the second case (placebo injections are not used).
I found out that the lung tumor is at the top part of my right lung and that the bone tumor is an entirely separate tumor in a different part of my torso. The kidney tumor is also on the right.
These photos of the cross-sectional scans that reaveal the tumors were taken on the lightbox in the consulation room today.
Pointer indicates kidney tumor.
Lung tumor shows on the inner wall of lung.
Update: This recollection typed up in a short time after the visit and may contain some inaccuracies. I will review a.s.a.p.
Update 2: It seems that my main misunderstanding from the consultation was that the two chemotherapy drugs listed above are normally used together (Carbo/Gem) and are not separate options. The information about the clinical trials will also yet need to be reviewed, corrected and expanded upon.
6 responses so far ↓
kimcaraher // 1, February 2007 at 10:50 pm
Good luck with your decisions. I added to the last dichloroacetate post with the address of an ABC online forum discussing it. There are two forums, one which focuses on the drug, the other ends up being about drug companies. When I work out how, I’ll try to link to the former from my blog.
I don’t suppose it’s much of a comfort, but your odds are better than mine. But then I’ve known about it for nearly 2 years, rather than 4 weeks. My odds of being here this year after developing lung mets in Oct 05 were already very low – but here I am, just the same, and writing on blogs! Even had the lungs completely clear for 5 months (after more than a dozen tumours in them of sizes between 1 and 3 cm), which they thought could’t happen – but it did. It’s come back now in bones and liver, but you never know what might happen next – like the dichloroacetate. Let’s just hope it happens fast.
faceache // 2, February 2007 at 7:41 am
Kim, I’m not familiar with the term lung mets as I haven’t come across it before.
The text in the link indicates that it is short for lung metastasis? I suppose meaning that you have had secondary breast cancer tumors in the lung?
Thanks for sharing your experiences. I am looking forward to my Lung Cancer Support group which is scheduled to start at the RPA cancer centre in a week or two. The nurse told me yesterday that there is some chance that it may not go ahead if not enough participants are available at this time.
In any case, I hope that I can continue to meet people like you on the Internet and I think that it will be helpful to have contact with people in comparable situations.
faceache // 3, February 2007 at 7:49 am
I was re-reading some of your comments and now realise your primary is salivary duct, rather than breast.
Sorry I didn’t get that first time.
Pain in decline? « faceache // 7, February 2007 at 8:54 pm
[...] I feel that earlier today, I was relatively comfortable with reduced soreness. The soreness seems to have increased slightly now in the evening. I have also been taking vitamin C (1000mg three times a day). Altogether I have been feeling fairly bright eyed and bushy tailed and quite absorbed by a number of activities. Talking to the oncologist on the phone did reduce my mood a bit as I am yet to make the difficult decision about which therapy to try. [...]
CT scan report April 24, 2007 « faceache // 26, April 2007 at 7:45 pm
[...] Sample slides from the original diagnostic scan are included in a previous post. [...]
Not so good CT scan « faceache // 6, May 2008 at 4:13 pm
[...] The original primary lung tumor has almost doubled in size when compared with the last scan. The mass in the right kidney has also significantly increased in size and it is now thought that this may be the source of the increasing discomfort I have been feeling in my lower back. The scan does not show any significant indications of cancerous activity at the 12th rib site of the original tumor that led to diagnosis in December 2006. [...]