Wednesday, August 15, 2012

Mayo Clinic Visit Part 3

I decided to get a consultation at the Scottsdale Mayo Clinic after I wasn't really getting answers from my oncologist about some of the side effects I was having and when he didn't know about a couple of recent studies I read about online.  Plus, I have not gotten a second opinion on anything up to this point.  I wanted to know that what we have already done for treatment and what we are doing now were/are the best treatments/tests that can be done.

Getting the appointment went pretty easily.  I had to fill out a couple of questionnaires online and talk to someone in their front office before getting a date and time.  Once I got the appointment I had to get all of my medical records sent since my first mammogram.  It took a lot of phone calls but everything eventually got sent to Scottsdale.  I have also learned my lesson with the insurance company so I worked with them to make sure the visit was covered.

Scottsdale is around a four hour drive from here so I took a day off of work and traveled down the night before my morning appointment.  There is a nice hotel right next door to the clinic and I got in right before 9pm and was able to get a last minute dinner.  I was surprised how nervous I was but yet excited.  My appointment was at 9:30 but I went over early to scout out where I needed to go and to get some breakfast if I had time.  The facilities there are beautiful and everyone was very friendly.  Heck, they even had underground parking so I was out of the hot Arizona sun and someone playing a grand piano in the lobby. 

The oncologist I met with talked to me more in one hour than my current oncologist has in four years.  It was great to have someone explain things to me and answer my questions directly and happily.  I took pages and pages of notes.

One thing she told me that gave me some peace of mind, is that she would have positively had me complete chemo.  She would not have even ordered the oncotype dx testing.  With my age and the size of the tumor, she said that I had to have chemo.  I still have nightmares about my time while on chemo and it was nice to have someone else agree that it had to be done.

I asked about the problems I have had with my legs and feet.  She was able to map out places where I have little or no feeling.  She said that it was neuropathy from chemo and that most people get gradually each year and that I was unusual for both the severity and the length of time I've had my problems.  If it was going to get better, I should be better by now.  She suggested that I try taking Vitamin B6 at 100mg per day to see if it helps.  It won't get better right away but it might in a few months.  She did say I could take Neurotin (sp?) but that it should be as a last result, like if I end up in a wheelchair, because of the negative side effects of it.

She said that she used to have everyone in my situation and on Letrozole get the Zometa infusions I am having every six months.  New studies are showing mixed results though and that if I wanted to stop one thing that we are currently doing, that would be the one.  She suggested getting bone density testing instead and then continue to test each year to keep an eye on it. 

She said that I was at an odd age at my diagnosis and most women are either younger or older when they get breast cancer.  It put me in a strange spot where I could either be treated as a younger or older patient.  Most women in their 30s or younger get genetic testing.  Since my tumor was so big she said that it probably started growing in my mid to early 30s and I could have genetic testing.  She told me to maybe see if my insurance company would cover it and then decide.  I guess it costs around $3,000.  The pros she said is that I would either know if I was genetically inclined to get it or not and if so, I would have my mammograms or MRI tests every six months so we could catch it quickly when it comes back.  Plus, my sisters and niece would know to keep up with their testing.  On a side note, her assistant told me that there is a group of Jewish descent from Eastern Europe/Russia that carry a breast cancer gene.  We believe that our ancestors on my mother's father's side of the family were Russian Jews.

We discussed my big weight gain during chemo.  She said that she sees it a lot with the different drugs patients are given these days.  She said since I am now taking Letrozole and after my hysterectomy it will be extremely hard, but I need to lose weight to lower my chances of recurrence.  She noted that right now I could eat five pretzels a day and still gain weight.  She wasn't too positive on my ability to do it but said that I must. Anything I can do to even lose a little will go a long way.

She said I should drink less than four alcoholic drinks a week and was happy to hear that I am taking an aspirin a day for my heart.  She said that while there is not a lot of study on it since there isn't money to be made, there are signs that taking aspirin could really lower breast cancer recurrence risks.  She also suggested taking an omega 3 fatty acid supplement or flax seed daily for my heart not to lower my chances or recurrence.

She said also that there is a big study going on right now studying if Vitamin D also helps lower breast cancer risk and was pleased that I am taking large weekly doses right now.  She agreed that it will also help with the problems I am having with my hands as I raise my Vitamin D levels in my blood.

I asked about the six more years my oncologist wants me to take Letrozole.  She said that the jury is out on how long to take it.  She said with my young age and size of the tumor that the ten years total of tamoxifin / letrozole may be the way to go.  She said that I should come back to see her in the fall of 2013, which will be the five year mark, to see what the studies are saying.

As far as what testing I should have, she said I should visit my oncologist every six months, unless I have unexplained pain and then I should go in if it lasts more than a couple of weeks.  And then a mammogram every year. 

So, other than the Zometa infusions, she thought we are doing exactly what we should be at this stage.  I am so happy that I made the trip down to the Mayo Clinic and have started to take my health care into my own hands.  I take my Letrozole, aspirin, and Vitamin B6 pills every day and my Vitamin D pill once a week.  I'm starting to walk every night and am trying to lose weight. I had a echocardiogram and stress test this past Monday.  I get the results in a couple of weeks.  Hopefully they come back good and I can relax for a little bit. 

1 comment:

Cameron VSJ said...


I have a quick question about your blog, would you mind emailing me when you get a chance?