Asking Questions and Challenging the Status Quo

Thursday, June 5, 2014

Dawning on Me

I'm beginning to realize something pretty important, I think. It's that I got a lot of heavy duty treatment for my cancer, mostly because I was young and the cancer was therefore aggressive. There's no doubt I was hit with much more toxicity than the average, older cancer patient.

Which leads me to ask, do doctors even know what all those drugs in stronger concentrations can do to someone?

Add to that the fact that my time horizon after cancer will likely be much longer because I got the disease in my 30s rather than in my 60s as is typical, and I would have to decide that no, they do not know what all could come up for me because of my treatment.

And that's a scary, scary thought. Mainly because anything could happen, and there's a strong chance I would be ignored or simply not believed.

Currently, I feel like crap pretty much all the time. I told my oncologist this at my six month appointment and he ran a couple blood tests, which actually didn't come back perfect but don't concern him.

I suppose I could have something causing me a bunch of really crappy, intense symptoms that just popped up out of the blue and is in no way related to the cancer I had or the treatment for that cancer.

But my gut tells me those are really good places to start looking and ruling things out. For example, many of my symptoms could be signs of heart trouble. The leading and likely only reason I'd have heart trouble is because I took aridymiacin and Herceptin, both very strong drugs that could kick up heart trouble anytime for the rest of my life.

I figure since an oncologist gave me those drugs, an oncologist should be the one to check this out. The fact that I have to press the issue is frustrating. It's also eye-opening and makes me realize I might be on my own for a lot of this going forward.

And I don't like it.


  1. Your doctor should have been doing regular Echos or MUGAs when you were on Herceptin. I've been on Herceptin for 4 years and have had a MUGA every 3 months.

    Studies show that even when heart problems are caused by Adriamycin and Herceptin, they rarely last. Nearly all problems happen during therapy or within the first 2 years post-therapy. " The risk of developing heart problems is higher in trastuzumab-takers, those problems that do occur usually happen during treatment or within the two years after and resolve once treatment ends."

    As you noted, you are your own best advocate. Nobody will care more about your health than you will. You need to ask your doctor these questions after doing your research, and press for whatever the standard or care for your situation might be. If you have been on herceptin and adriamycin and your LVEF has not been measured, it should be.

    I'm not sure you got anything "more aggressive" because of your age but it is absolutely true that you will deal with fall-out much longer than a woman who had been diagnosed in her 60s will. Hopefully, you will be restored to full and normal health but if there are lasting problems, you will be living with them for decades.

    I think that's why it's important that we try to take our health into our own hands and eat properly and exercise. I am metastatic and have been in treatment for so many years and as of now, done 7 different chemos, but I have reached the holy grail for metastatic women - remission. I am going to prepare myself for the next phase by getting into the best possible shape I can now.

    Good luck to you. I think the scariest part is post-treatment, when you start imagining your cancer has returned. All I can say to that is try to relax. If it has, it will make itself known. *hugs*

    1. Edit: I'm sorry, I didn't realize you were 8 years past treatment. It is very unlikely you've been left with heart disease at this point. But of course, anything that concerns you should be brought up with a doctor.

      Again, good luck!