Simply speaking, for those of you not familiar with my condition, I had clear CT scan 6 months after surgery and chemo with Cisplatin+Alimta 2 years ago. I was stage T2N1.
Subsequently I had 2 more CT scans, (one every 6 months) which showed clean. There were no PET taken. Two months after the last CT (12/13), the new CT and PET confirmed the tumors has spread to bone, brain, adrenal gland and 2 more in the chest area, some of them larger than 2cm. I had them treated by radiation, cyberknife and start chemo tomorrow. Carboplatin+Alimta
I was bitter at first, according to Dr. West, it is the protocol for this type of treatment. I hold no resentment against anyone involved in my case including myself.
Whether I will survive this serious condition this time ( spread wide and large in size) is not the point of this post. The following questions are for people in the similar situation and hopefully can be of some help.
How did this happen? (over confident, not vigilant enough)
Was there time we could catch it earlier? What should have been done?
How did it grow so fast and go to major parts of body just in two months time? (must be there before)
I have to come "home" here to share.
Thank you for your inputs.
gigy
What went wrong??? - 1263249
gigy
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Reply # - April 14, 2014, 06:06 PM
Reply To: What went wrong???
gigy, I'm so sorry you're in this position. From what you've said about your care there wasn't anything you could have done differently prior to recurrence. The cancer is sometimes already spread out of the lung to an extent that surgery and chemo can't kill all of it. Instead it stays in the blood stream or lymph system until it finds a place or mutates so to take hold and grow to tumor size.
Now is the time to hold the cancer to a point that it causes as little pain as possible. There are several options for cancer control and more for pain control and comfort care.
We have lots of info here as you know.
All best,
Janine
Reply # - April 14, 2014, 08:36 PM
Reply To: What went wrong???
Gigy,
I think the issue is that your expectations may not have been realistic. The point is that you didn't do anything wrong, nor did your doctors. Some cancers are destined to recur and metastasize, no matter what you do or don't do. Others are going to be cured from surgery, whether you do additional treatment or not. A small minority may possibly be on the bubble, and will recur with no post-operative chemo but not recur with the best treatment. That's only about 1 in 10 or 20, and the rest of the patients are either going to recur or not recur based on the biology of the cancer, no matter whether you do post-operative treatment or not. Why do we recommend chemo for everyone (or at least most patients) who are good candidates after surgery? Because we can't tell beforehand which patients are going to be that 1 in 10 or 20 for whom the post-operative treatment makes the difference.
The biggest variable in the outcome of a cancer is its biology. That's why, for metastatic disease, you can give the same chemo to 10 people and have 3 respond well, 5 demonstrate a minor response or stable disease, and two progress right through it. It's not the patient or the doctor, or the wrong chemo...it's that the biology of the cancer is pre-destined to make some people do better than others, and others do worse.
It's fair to assume that there was microscopic, completely undetectable cancer that was resistant, or at least not sufficiently responsive to the chemo to kill off the last cancer cell. When that happens, the cancer is likely to recur, becoming visible and growing over time.
The humbling reality is that you, your doctors, and all of us can all just do the best we can against a cancer, but the cancer's biology is the overwhelming factor that is more important than all else. It can make us look brilliant or foolish, but it's simply not your fault, nor that of the docs. More scans would have just found mets earlier, but not prevented it.
-Dr. West