So, it has been a while since I posted. Everything was going along pretty well. I was looking forward to my 5 year mark of
being cancer free on December 22.
I went the oncologist in September and was given a clean
bill of health. I was looking forward to
stopping my Tamoxifen in April 2015, which would be the 5 year mark for the
drug. I was told that the new time frame
is 10 years. I was not happy about
staying on it, but my oncologist said that it is the new recommendation for
premenopausal women. It does also
increase your risk of uterine cancer, but the oncologist stated that it is
easier to treat uterine cancer than breast.
She can just take my uterus out.Real simple, right? Not liking the odds, but she said we can
discuss it further at my next appointment.
Now the big issue right now is my eyes. I recently went to get new glasses, since my
old ones broke. I have been having
issues seeing at night and street signs are distorted. The optometrist checked my eyes and saw an
issue with the macular area in the back of my eyes. He wanted me to see a retina specialist.
I went to see the retina specialist on Friday, October 3rd. He said I had Type II Macular telangiectasia
which about 4% of the population has. He
said I should not worry about it and that it should not cause any issues. I made an appointment for 6 months to follow
up.
On Monday, October 6th at 8am in the morning, the
retina specialist calls me. He stated
that he confirmed with some colleagues in Europe. They thought I actually have a cyst and he
wanted me to immediately stop my Tamoxifen as he thought that medication was
causing the eye issues. I informed him
that he will need to speak to my oncologist for me to make any changes.
I received a phone call from the oncologist on Tuesday. She had been playing phone tag with the
retina specialist and wanted to know, from me, what had transpired. I gave her the run down. She wanted me to get a second opinion.
I went for a second opinion on Tuesday, October 21st,
with a retina specialist at NYU. She confirmed the cyst, but also said that I
have some cloudiness to my lenses with indicates the starting of
cataracts. She recommended stopping the
Tamoxifen for 4-6 weeks and come back for another scan to see if my eye sight
will improve. The retina specialist
stated that I didn’t have to stop immediately, but she wanted to confer with my
oncologist before I did.
I called my oncologist on Friday, October 24th. I spoke with her assistant and advised her
that I wanted to know when I could stop the Tamoxifen. I received a call back later that day and was
informed that the oncologist still wants to see the final report from the NYU
retina specialist before making her decision.
That afternoon, I received a call from my oncologist’s
assistant. The oncologist wanted to see
me to discuss my options. I was confused
as I didn’t think there were other options.
I told her that I did not have time to come in for her to tell him to
just stop Tamoxifen. She stated that the
oncologist will either want to put me on Lupron which will put me into
menopause and then take a postmenopausal medication or take out my ovaries. I said you forgot the third option…Do
Nothing! The assistant didn’t like that
answer and said they do not recommend that.
It would be on me if the cancer came back. She then said she will speak to the
oncologist.
On Monday, October 27th, the assistant called
back and stated that I could stop the Tamoxifen. I can wait several weeks and we can discuss
coming in then.
Between the 10 years staying on the meds originally and
wanting to put me into menopause, I am not very happy with this oncologist
right now. There has to be other
options. I have put one of my friends on
the case. She is a Breast Cancer Patient
Advocate. She is looking for a new
oncologist for me and into other options.
On Tuesday, October, 28th, I stopped the
Tamoxifen. I am hoping my eyesight
improves. It is hard to drive at night
and street signs and text are distorted. Withdrawal has not been bad so
far. I am just having headaches and
stomach pain.
So much for an uneventful 5 year mark, I will keep everyone
updated.
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