After giving it some time and thought I decided that waiting 2 weeks just wasn't going to work. I call the Cancer Center back and asked to be put on the list for first available appt. I just so happens that someone had just called to cancel an appointment on September 3rd. I got that one. I can live with that.
I am still on the list for an earlier appointment is one becomes available.
Friday, August 28, 2009
Waiting is hard!
Today I got the awaited call from Dr. Quackenbush. (Medical Oncologist). I had been anticipating this call, wondering when I would hear the results of the molecular study on the tumor cells.
He said, " I have the results and they are quite interesting. We need to meet as soon as possible to go over these together." When can you come to the Cancer Center."
I said, " I can come any time."
He said, "I will have our appointment nurse call you right back"
Now, wouldn't you think that this was going to be today? Or maybe as late as Monday or Tuesday next week?
Nooooooo, The gal called to set up the appointment. The earliest I can see Dr. Q. is Friday, September 11th. Two more weeks. Explain that to me!
I have a call in to the Patient Communication Nurse, Marty Hagerman.... but she is out till Monday. I hope she can explain this to me.
I initially waited 2 weeks to see Dr. Q the first time, then he determined we needed more studies, another 2 week wait for the results, now 2 week wait to discuss the results. Why didn't his nurse make sure I had an appointment to discuss the results when I saw him last? That seems reasonable to me... what do you think?
He said, " I have the results and they are quite interesting. We need to meet as soon as possible to go over these together." When can you come to the Cancer Center."
I said, " I can come any time."
He said, "I will have our appointment nurse call you right back"
Now, wouldn't you think that this was going to be today? Or maybe as late as Monday or Tuesday next week?
Nooooooo, The gal called to set up the appointment. The earliest I can see Dr. Q. is Friday, September 11th. Two more weeks. Explain that to me!
I have a call in to the Patient Communication Nurse, Marty Hagerman.... but she is out till Monday. I hope she can explain this to me.
I initially waited 2 weeks to see Dr. Q the first time, then he determined we needed more studies, another 2 week wait for the results, now 2 week wait to discuss the results. Why didn't his nurse make sure I had an appointment to discuss the results when I saw him last? That seems reasonable to me... what do you think?
Thursday, August 13, 2009
Oncology Drs.
Today I met with two oncology doctors. One in charge of Radiation Therapy (Nigrin), the other Chemotherapy(Quakenbush).
The Short Version: Radiation is the best insurance against the return of breast cancer, it will be 7.5 weeks/5 days a week of radiation treatments
Chemo: doing another test to determine the best treatment. Will have to wait two weeks for those results.
The Long Version: Our first appointment was at 12:30 with Nigrin's nurse. She asked an hour's worth of questions and did all the usual vital signs and such. We then saw the Dr. She said that with lobular insitu it is either mastectomy or radiation..... your choice. The side effects of radiation are all skin related. A sunburn type damage, which they watch carefully. She recommends using a good aloe vera lotion... anybody know of a really good one?
They will only be treating the right side. I think I remember them saying it is 5 weeks for the whole breast area, and then 2.5 weeks focused on the offending site. I will go in for treatments every day Monday-Friday, with holidays off. (I am certain that is for the employees benefit, not the patient :) Apparently it is quick (15-20 minutes) the nurse said it takes longer to get dressed and undressed than to do the treatment. We shall see. The only reason for a break would be significant skin problems. These treatments will start after my blood level comes up after ChemoTherapy ends, usually about 1 week.
At 3:30 we saw Dr. Quakenbush. He reiterated that I have Lobular insitu cancer... that is Her2 negative and is not invasive. It could become invasive, but is not at this time. My chances of getting breast cancer have potentially doubled because I have had a breast cancer.
He then told me that I would be doing 5 years of tomoxafin. I knew enough to know that this was the treatment for a hormone receptive cancer. My understanding was that mine was NOT hormone receptive. Because of that we questioned him on it. He essentially said he didn't believe the lab results, that is was hormone receptive and tomoxafin was the way to go. We asked about side effects. The biggys are blood clots (mostly in smokers) uterine cancer, cataracts, and hot flashes. He asked me if I still had my uterus...yes, and told him my eye doctor has told me I have the beginnings of cataracts, and I am having hot flashes now that, yes, are keeping me awake at night. This gave him reason to pause and rethink. The hot flashes will get more disruptive (as I am typing this I am having wave after wave of excessive warmth)... and 5 YEARS of it... Argh! It would speed up the cataract development. So he decided that it would be best to do additional testing on the biopsy tissue.
Chemo would be for 3 months if that is what I need.
This would be a molecular study that would look for 16 different genes. This would then determine the best course for treatment. There is no reason to do tomoxafin if it is not hormone receptive and also no reason to do Chemotherapy if that won't do the trick as well.
This means that we are going to be waiting 2 weeks for those results.
Another bit of information is the order of treatment.
If it involves Chemo and Tomoxofin: Chemo-Radiation-Tomoxafin (5 yrs)
If it doesn't involve Chemo: Radiation-Tomoxafin (5 yrs)
So we are still in a wait and see place with lots of unknowns.
I am making most of the time working in my yards, working on projects and finding fun where ever I can. Last week we went to Southern Oregon to see my parents. On the way we stopped at Crater Lake, Rogue River Gorge and Natural Bridge. After our visit with the folks we went to the Redwoods in Northern California. These were all wonderful reminders of our creative and amazing God! We also had great visits with my parents and many, many more family members. I won't bore you with the list. It is a blessing to have wonderful, fun and supportive family members! God is Good!!
Tomorrow morning we are headed to North Idaho to go camping. Kendra and Tim, Ben and Daniel will be joining us, as well as several of Tim's family. We are ready to have a good time!
The Short Version: Radiation is the best insurance against the return of breast cancer, it will be 7.5 weeks/5 days a week of radiation treatments
Chemo: doing another test to determine the best treatment. Will have to wait two weeks for those results.
The Long Version: Our first appointment was at 12:30 with Nigrin's nurse. She asked an hour's worth of questions and did all the usual vital signs and such. We then saw the Dr. She said that with lobular insitu it is either mastectomy or radiation..... your choice. The side effects of radiation are all skin related. A sunburn type damage, which they watch carefully. She recommends using a good aloe vera lotion... anybody know of a really good one?
They will only be treating the right side. I think I remember them saying it is 5 weeks for the whole breast area, and then 2.5 weeks focused on the offending site. I will go in for treatments every day Monday-Friday, with holidays off. (I am certain that is for the employees benefit, not the patient :) Apparently it is quick (15-20 minutes) the nurse said it takes longer to get dressed and undressed than to do the treatment. We shall see. The only reason for a break would be significant skin problems. These treatments will start after my blood level comes up after ChemoTherapy ends, usually about 1 week.
At 3:30 we saw Dr. Quakenbush. He reiterated that I have Lobular insitu cancer... that is Her2 negative and is not invasive. It could become invasive, but is not at this time. My chances of getting breast cancer have potentially doubled because I have had a breast cancer.
He then told me that I would be doing 5 years of tomoxafin. I knew enough to know that this was the treatment for a hormone receptive cancer. My understanding was that mine was NOT hormone receptive. Because of that we questioned him on it. He essentially said he didn't believe the lab results, that is was hormone receptive and tomoxafin was the way to go. We asked about side effects. The biggys are blood clots (mostly in smokers) uterine cancer, cataracts, and hot flashes. He asked me if I still had my uterus...yes, and told him my eye doctor has told me I have the beginnings of cataracts, and I am having hot flashes now that, yes, are keeping me awake at night. This gave him reason to pause and rethink. The hot flashes will get more disruptive (as I am typing this I am having wave after wave of excessive warmth)... and 5 YEARS of it... Argh! It would speed up the cataract development. So he decided that it would be best to do additional testing on the biopsy tissue.
Chemo would be for 3 months if that is what I need.
This would be a molecular study that would look for 16 different genes. This would then determine the best course for treatment. There is no reason to do tomoxafin if it is not hormone receptive and also no reason to do Chemotherapy if that won't do the trick as well.
This means that we are going to be waiting 2 weeks for those results.
Another bit of information is the order of treatment.
If it involves Chemo and Tomoxofin: Chemo-Radiation-Tomoxafin (5 yrs)
If it doesn't involve Chemo: Radiation-Tomoxafin (5 yrs)
So we are still in a wait and see place with lots of unknowns.
I am making most of the time working in my yards, working on projects and finding fun where ever I can. Last week we went to Southern Oregon to see my parents. On the way we stopped at Crater Lake, Rogue River Gorge and Natural Bridge. After our visit with the folks we went to the Redwoods in Northern California. These were all wonderful reminders of our creative and amazing God! We also had great visits with my parents and many, many more family members. I won't bore you with the list. It is a blessing to have wonderful, fun and supportive family members! God is Good!!
Tomorrow morning we are headed to North Idaho to go camping. Kendra and Tim, Ben and Daniel will be joining us, as well as several of Tim's family. We are ready to have a good time!
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