Tuesday, March 23, 2010

perspective in grey

On June 30th it will be three years since my first clean scan, after the cancer had spread to my liver.

For almost three years, I have had no evidence of disease (been NED, in cancer lingo).

And yet I remain in treatment.

I am asked frequently why I continue to receive chemotherapy and Herceptin, if there is no sign of cancer in my body. And the truth is that I often ask myself the same question. Certainly, I don't feel like I have cancer. And I do feel that the cumulative effects - both physical and emotional of ongoing treatment are wearing me down.

I am stuck in cancer's grey area.

My oncologist said to me last summer, "For all we know, you could be cured."

We just don't know enough.

Another oncologist I spoke to, hinted that some would take me out of treatment at this point. A third suggested that some doctors might take me off the chemotherapy and leave me on the Herceptin.

But they all agree that we just don't know enough to make any decision based on certainty. There are just too few women in my situation, younger women who have been diagnosed with metastatic breast and responded so well to treatment, to know what to do with us in the long term.

There are more of us every year, though.

In ten years' time, there will almost certainly be more answers.

And when I get too frustrated, I remind myself that if I had been diagnosed ten years earlier, I would almost certainly be dead.

So, for now, I'll take the grey.


Anonymous said...


I feel like learning to live in the grey areas, although at times frustrating, has also been one of the hidden gifts of this incredible journey.

It will be 9 years for me this September - and to be sure there have been more than a few times that I have wondered how much longer do I need to take this medicine. Ultimately - like you I recognize that we are pioneers in the management of a virulent disease.

Maybe in 10 years they will decide that long term Herceptin + is not what is needed, but then again, maybe in 10 years time they will be able to say with certainty that Herceptin + is a good way to remain healthy.

And so it goes, we continue with our treatment and enjoy living - the good, the bad and the frustrating.

Maybe one day we will share a nice pot of tea together and say"remember when,..." until that day je te souhaite bon courage ma belle Laurie. xo C

The Maven said...

That is a tough place to be, I'm sure. Who knows what the right answer is at this point? But can I just say that, although we haven't spent a great deal of time together, I am so glad to know you, know your journey, see your smile, and see you LIVE. That, to me, makes gray a much brighter colour :)

Dee said...

Hi Laurie,
As someone who had great tumor markers for almost a year (from August 2008 to June/July 2009), I decreased the amount of oral drugs that I was taking because I didn't believe that the cancer was active anymore. I wasn't NED (calcium deposits in my bone marrow that were not growing), but my disease was stable. So, I all but stopped the oral chemo (Xeloda) and decreased my dose of Tykerb (a targeted therapy that attacks Her-2 positive cancer cells) from January to June/July. Then, my markers started rising - they still are - and I have swollen lymph nodes. So, my cancer may have been under control and by stopping the drugs, it got out of control again.

I don't know if that will help or not - but it will give you a perspective on why your doctor may still want to keep you on your treatment. I *might* argue for just taking Herceptin and seeing what happens - but that is because I am sooo anti-chemo. Anyway, that's my experience with this disease.

Happy Spring!

Wendy said...

The grey area is a double-edge sword, isn't it? So frustrating. I feel your pain.

I've been out of treatment for almost a year now. Just got word today that my first bone scan was clear with no signs of mets. But, I'm still left wondering if there is one rouge cancer cell floating around just waiting to make a new home.

I hate that you are still going through treatment. I'm thinking of you!

Delaney said...

Congratulations! I am coming up to my 3 year post-diagnosis mark. It's a strange mark to hit, when the Dr at first told me I would likely only have 2-3 years to live! I understand about the living in the grey, the uncertainty of ongoing treatment. I was told by my oncologist here in Kitchener that I am only one of two patients of hers that are on long-term Herceptin (I had mets to my liver, which are now gone). That's too small of a stat, and I'm hoping those Dr's are right about finding a cure within 10 years!

There are several women on the www.her2support.org boards that have been on Herceptin for 8-9 years (since it's been available longer in the US), after being diagnosed Stage 4 but now NED, and are now deciding to go off Herceptin. It's still early days yet, but they are doing well. Of course this is not a scientific study, but definitely gives hope for a Herceptin and chemo-free

Of course I am grateful for the Herceptin, as, like you, I would not be here without it! Have your oncs considered dropping the chemo and just leaving you on Herceptin? I know my oncologist didn't even consider ongoing chemo after they couldn't see any more liver lesions. Just a thought...

Hugs to you on this important anniversary!

laurie said...

I really appreciate each one of your comments. Thanks for the words of advice and support and for sharing your stories with me. Lots to think about.
And Dee - I am sorry that you are struggling. Damn cancer sucks.

Unknown said...

Hey Laurie, Adding my voice to the living with grey. I'm hitting four years post liver mets, stable NED, persisting on hormonals, zometa, a cox2 inhibitor and scans every 4 months. I joke to my husband that if cancer doesn't shorten my life all the radiation exposure and heart damaging drugs will. I don't think they've figured out the long terms effects of zero body estrogen either.
No answers, "delicious uncertainty" - don't know about that...but profoundly glad I am here writing this.
Last visit my onc and I talked about this. His kind words were not to underestimate the importance of life quality and that the best predictor of the future was the past.
I'm still pondering if this conversation will change my choices any.
Probably not - better the demon I know.....
Cheers, and belated congrats on the book nomination!!!!

Rebecca said...

I'm jealous of your gray!!

As someone commenting live from my photodynamic therapy trial, and never having any success with herceptin, I just want to point out that in between treatments you can enjoy life to the fullest with less clouds following you.

I've also done the chemo you are on. As long as your side effects aren't bad (less then grade 2), I'd say stick with it. I have an oncologist that always tells me "It's good to have herceptin on board". And then I stick out my tongue and give her a loud raspberry.

Dee said...

Hi Laurie,
I mostly wanted to say that I thought things were under control, got a bit cocky and stopped taking the medications . . . and things went a little out of control. That's what they're afraid of.

But, I should also rephrase my comment and say that one of my tumor markers is going up and one is going down. I have swollen lymph nodes under my left arm pit, with the assumption being that they are swollen from cancer coming off the three lung tumors I have. I didn't mean to sound so dire, though; while my cancer isn't totally under control anymore, it's not totally out of control either. Slow growth (which sucks, but better than fast growth).

I am, however, eligible for an immunotherapy clnical trial. I start in two weeks, at the Univ of Washington. I will be given a vaccine, which will make the cancer cells look like a foreign cell, and then they will harvest my t-cells (white blood cells) and grow millions of them and then give them back to me. I have seven visits to Seattle in the next three months. One of the research papers I read from this group regarding vaccinations and immunotherapy states that the average "progression-free survival" was 12-24 months and overall survival was 12-48 months. Or something like that. It seems promising and side effects seem relatively benign. So, if it works, I won't have to do a traditional chemotherapy.

Also, one of my friends sent me this news nugget about nanobots:

Anyway, Laurie, thank you! I'm doing okay, even with things not-under-control, but not-out-of-control. It is grey; in cases like many of us with metastatic disease, treating us is more like an art and less like a science - they just don't know for sure what will happen! The strategy is to live in the moment - an attitude that I am trying to cultivate. Take care!

Lene Andersen said...

I'd be too freakin' nervous to stop...

But yeah, how do you know if it's remission or drug-induced remission? With RA, I could risk going off the meds to see (theoretically - ain't no way I will), but there's a fairly decent chance that once I'd been proven wrong - I'm only in remission as long as I take the drug - starting the meds again would suppress things again. But would cancer act the same way?

And besides. I like having you around, grey area and all.

Michael said...

"Living In Grey" is the perfect title for a book of stories from
lots of people living this life. All it needs is an editor to collect the stories and put them forward.

You've got the basis for it right here, right now. It's enough to package as a proposal.

Daria said...

Grey is ok!

Wishing you all the best.

EMR said...

I have seen many patients braving this illness and making life get scared of it.There is no reason why you must fear death...it may be nearing you or me...with or without cancer.Live every minute and with all the enthusiasm that a person not knowing any danger coming to him or her.