12 small tumors after radiation

Sorry You Have to Deal with This
Hi Bonnie-

I am so sorry you have to deal with this. My wife was diagnosed with Limited SCLC in November of 2009. She went through 4 rounds of chemo (carbo/etoposide) plus 30 plus radiation treatments. There was only the one tumor around her upper bronchial tube in her left lung at the time. After the radiation and chemo, they scanned her and found no tumors. She was given the option of WBR as a preventative measure (PCI) and chose to do this since it affected the statistics sigificantly. After 12 WBR treatments (with only about half the dose she could ever get with this treatment), she was in remission for the rest of 2010 (May until December). In January she had a new round of scans that showed no cancer in her lungs or torso area, but 3 tumors in her brain. Obviously, we were devastated with this news. She had the Cyber Knife procedure on the 3 tumors in her brain and a month later found that they were no longer there which was good news. A couple of weeks later she had the 3 month CT scan which showed the cancer back in her left lung and one of her lymph nodes. She immediately went on 6 cycles of Topetecan.

A CT Scan and MRI on her brain in early July showed that the cancer had spread to her other lung as well as numerous lymph nodes. The MRI showed a tiny lesion was back on her brain. The oncologist suggested a 3rd round of chemo (Taxotere). She had 2 cycles of this then began to have significant balance issues as well as massive headaches. They did an MRI that now showed 5 tumors on her brain with one of them being fairly significant in size. The MRI also showed signficant swelling (the cause of the headaches and balance issues). They put her on Decadron for the swelling and sent her back to the Radiologist that did the initial Cyber Knife procedure. He noted that there was not much he could with this procedure on these tumors. He also noted that the prognosis was not good for this (again based upon statistics). He suggested that she do WBR again since she only had half the dose with the PCI. She completed the WBR today and will have another MRI the first of October.

Last week we saw her oncologist who has temporarily stopped the Taxotere while the radiation has been going on. She mentioned that an additional chemo treatment had been approved about 2 weeks ago for mets to the brain from SCLC. This is called temodar and has been used in the past for glioblastomas (brain cancers) and mets from melanoma. Her insurance approved her quickly for this new chemo and she started it last Thursday. She has finished one cycle of it and will do another cycle in 28 days (again around the first of October).

You didn't mention what type of lung cancer your mother had, but the point I am trying to make is that lung cancer is generally extremely aggressive (especially SCLC). It would not be unusual to see additional tumors after the WBR as my wife had none before the PCI and then had a total of 8 additional ones later in a fairly short period of time. The current episode began around the first of July and has progressed rapidly. Her oncologist and radiologists have treated her very aggressively from the start (I made calls to both MD Anderson and Sloan Kettering to assess the treatment she was getting and was told by both that she was getting the latest treatment procedures). The outlook is not good at all, but we remain hopeful that the current WBR treatmen as well as the temodar will buy some time. Cancer treatment is changing daily, even with this particularly evil type of lung cancer. Her doctors seem to be using the best treatment available today. If she can maintain the quality of life she currently has (actually pretty good as she can still get around okay, eat and enjoy being with her family), then she wants to keep fighting.

I hate this scourge called cancer with all that I have in me. I hate that anyone else has to experience it as well. I am getting through it as her caregiver by leaning on God every step of the way. When she was first diagnosed, I prayed and was only promised one thing - that he would never leave us. He hasn't left us one time during the whole ordeal. That is my way of dealing with this and I will leave it at that as everyone has to make their own choices in this regard. I respect others that want to try a different approach and will not judge them because they see it differently than I do. I trust you will do all in your power to help with your mother! Gathering information from the internet can be a disheartening experience, but you have to remember the only metric that the doctors have to measure is statistical in nature. In almost all instances, they use the "median" as the basis. This means that 50% are worse off and 50% respond better. Someone in the caregiving contingent needs to be completely informed about treatment options, statistics, possible outcomes, etc. I have appointed myself as that person in our family since I have some scientific training. I am a civil engineer by profession and understand statistics very well. I try to balance what I read with my training and have been able to remain objective so far. I would caution you again though that what you may read will cause you concern. I know this has been a bit long winded but I just wanted to let you know about the experience we have had to date. This also will let you know that it is not that unusual to see the additional tumors after the treatments to date.

I have raised up a prayer for your Mom as well as you Bonnie! I pray that you all find peace during this process as it will most definitely be one of the most difficult you have encountered.

Dave