BIG news!!!!!!!!!

June 8/11

Just got the GREATEST news gang!
"The Nutty Professor" (my nickname for the medical oncologist at
Princess Margaret), called me this afternoon. The results of my $5,000 Oncotype DX diagnostic test came in early from California! Now I don't have to wait until next Tuesday, and the word is - FANTASTIC!

SO happy I'm jumping for joy!!

My recurrence score (R.S.) number means I'm LOW risk, so NOOOOOO CHEMO!!!!!!

The Doc says my R.S. number is 19 and that he would never recommend chemo for anyone under a number of 22! - So - no nausea, no feeling horrible for days on end, no hair loss - no chemo! Yippie-yi-yo-ki-yay! Thought my heart was going to explode after I hung up the phone. Things are looking up! Don't even know who to thank!

Called Sam, Carrie and my parents-in-law right away to give them the good news. They're all SO happy and relieved. (no one moreso than me!)

So, I'm keeping my appointment with the Doc on Tuesday, to get further details and find out more about my treatment (radiation plus Tamoxifen).

Once again, - to everyone who's been sending me good vibes, positive thoughts and everything else - you did it for me!

Now I really want to go out and do something exciting!

The apprehension game

May 27/11

Waiting for results is really tough. Hate it. Meanwhile, the appointments are piling up. I'm sittin' here (NOT by the dock of the bay - only wish!), writing down the full list of upcoming visits to Princess Margaret Hospital (so far).

Got word today that I'll learn the results of the $5,000 Oncotype DX diagnostic test at an appointment with Dr. Amir (Medical Oncologist) on June 14th at 11:30 a.m. Gee, only 18 days to bite my nails. (if I had any).

Good God, do I ever need a haircut! Insanity reigns! (or is it, "Serenity NOW!?!")

From what I've read, the Doc will receive a report that includes my Recurrence Score. An R.S. lower than 18 suggests a low risk of recurrence and that the benefit of chemotherapy is likely to be small and will not outweigh the risks (and horrible side effects).

An R.S. between 18 and 31 indicates intermediate risk of recurrence.
Information seems unclear as to whether the benefits of chemotherapy outweigh the risks of side effects.

An R.S. greater than 31 indicates a high risk of recurrence, and the benefits of chemotherapy are likely to be greater than the risks of side effects.

Apparently, some women who have had the Oncotype DX, later learned it was a "failure" or "incomplete" because there wasn't enough sample left from their tumour to actually carry out the test! How disappointing and frustrating would THAT be?

At any rate, all I can do is wait it out. So, in the meantime, here's a pic of my daughter, Kate, and her boyfriend, Damian. Took it while I was outside writing notes.

Cute, eh?
On the same day I meet with Dr. Amir, I also have an appointment at the "Survivorship Clinic." As I've quickly learned, cancer is a life-altering experience in many ways. Princess Margaret Hospital staffers say it's important that patients have a sense of courage, (me, courage??), confidence and control to assist them in knowing, navigating and negotiating their journey, so survivorship consults are offered.

A few weeks ago, a longtime friend of mine told me if I feel I need help with my fears and emotions, not to be afraid to seek professional help.

I thought I was doing OK, (sort of), till learning of this long wait before finding out about chemo, - and then was handed brochures about the joys of radiation therapy. At that moment, I met Shahnaz Bassiri, an oncology nurse with a true gift for kindness and compassion. Next thing I knew, I was crying in her sympathetic aura and telling her I'd like to see a therapist to talk things through. (Never been to one in my life, but guess now's the time). She quickly arranged a referral. So, seems I'll be meeting with someone (I believe a psychosocial oncology representative) on June 22nd. I'd better remember to bring Kleenex.

Radiation news

May 25/11

Back from my first appointment with Dr. Anne Koch, oncologist in the Radiation Medicine Program at Princess Margaret. It was also the first appointment I've attended alone.

Today's pic was snapped by Jerry, a hospital security guard who told me, "This is where the media always takes their shots!"
Dr. Koch is a beautiful young woman who was very giving of her time and helped me to understand everything that lies ahead. She was happy to hear I'd decided to go ahead with the Oncotype DX test (the one that costs $5,000 - government funded - and the tissue has to be sent to a lab in Redwood City, California).

She says that though my pathology report indicates I'm low risk in all areas for a recurrence, it would still be reassuring to know the results of this special test. Dr. Koch is hopeful (as am I), that it will indicate low risk. If that's the case, then I won't have to undergo chemo and can jump to radiation and Tamoxifen. The only drag is, the results from California won't come back for about three weeks, which means everything else gets put on hold until then.

If, by any chance, the Oncotype DX shows HIGH risk, then I'd need chemo, followed up by radiation a month later, plus Tamoxifen.

During my examination, Dr. Koch said she could certainly see I'd been through quite a bit of pain following surgery, judging by the bruising and swelling, but she's optomistic things will improve a lot over the next few weeks.

When it comes time for radiation (which may not begin until the end of June), I'll need 16 treatments, one each day (except on weekends). Dr. Koch says this kind of radiation is generally well tolerated, but also said (based on my surgical experience), I may, (er, let's say, definitely), will have some pain. (Should I haul out the Percocet again?)

Coming up next, I'll need a CT scan, then will get tiny dot "tattoos" to mark the exact area where the radiation beam needs to hit. (never thought I'd be getting tattoos at THIS age! - Rock on!)

I told Dr. Koch about my blog and she said she'll check it out.

Leaving the hospital today, I saw the easel with the daily message. It said, "In the depths of every wound we have survived is the strength we need to live." - Dr. Rachel Remen

Sounds good to me! For now, I'll be getting some "strength" by watching the final episode of Idol! Looks like Scotty is "in it to WIN it!"
(thanks Randy)

To everyone who reads this blog - I'm sending positive thoughts your way, as I feel I have some to spare today!
Love,
Elaine

More results

May 24/11.

Big day. Big news. Most of it good.

In the end, decided against that "As Seen On TV" shirt. (I was really only kidding anyway). I'm constantly finding scribbled notes for the blog all over the house. Discovered a scrap of paper last night on which I'd scrawled, "I REFUSE to go into oncology in black, grey or brown! It HAS to be my favourite colour - MAUVE."

So, out came the feminine new Mexx mauve shirt to lift my spirits, paired with the Hue jeans.

Ready go hear the news!
Half an hour before I had to leave for the appointment with the Medical Oncologist I lost the nerve to go alone and asked my daughter, Kate, if she'd come with me and take notes. Thankfully, she was available and said yes. (after all the years of accompanying MUM on appointments, I can't believe the tables have turned!)

Made it to the Princess Margaret Breast Clinic by 1:30, just in time to be escorted in for a prep meeting with a nurse and the oncologist's "fellow."

They asked a lot of questions and told me things looked pretty good as far as they could see. Then, they left us for a few nail-biting minutes to wait for Dr. Amir, the Medical Oncologist.

My heart was racing while waiting word on the treatment
Dr. Amir spent a long time with me, explaining the case and the risks. He wrote it out for me.

Age - 55 - average - no risk

Tumour size (removed) - 1.5 cm. - (small) - no risk

Grade - (How aggressive the behaviour) - I - (low grade) - no risk

Stage - I

Lymph nodes - Negative - no risk

Receptors - (Proteins on cancer that tell it to grow)
2 Hormones
Estrogen receptor (ER) - 99 percent - Good
Progesterone receptor (PR) - 10 percent - Good

HER 2 - Negative - Good

Can't say I understand every word of the above, but I was informed that it's the best news and it's unlikely I'll need chemo. (which is what I've been SO hoping to hear). However, there is one more test called Oncotype DX. It is very expensive, (but government funded), and involves sending some of the tissue removed during my surgery to a lab in Redwood City, California, (one of the only places this test is being done). It would then take about three weeks to receive results. The test can help define whether chemotherapy should or should not be added to the anti-hormone treatment. I originally turned the test down, but after discussing it with family members, changed my mind and have now asked the doctor to go ahead with it. Better to be safe than sorry.

I've also been given a prescription for Tamoxifen, but won't fill it till after I meet with the radiation oncologist tomorrow afternoon and find out about the schedule, (which probably won't start until June). Also found out about the side effects of Tamoxifen. The biggest one is hot flashes! (Now, I ask you, do I really need any help with that? - I'm hot enough!)