Gynocologist

Had the gynocologist yesterday.  She confirmed the cyst on the ovary is the same small one I have had for a while.  The large one is gone.

All else good.

Tests

I went to get my mammogram, U/S on my right breast and my bone density on Saturday.  Mammogram and U/S are clear.  I am waiting for the results on the bone density from my oncologist, but there shouldn't be any issues.

I had a pelvic U/S last week.  My pelvic U/S only showed a small cyst, which was OK, per my gynecologist.

My right eye seems blurry today.  Feh on that.  Hopefully, my eyes will get better.

Weight Loss

Since stopping the Tamoxifen, I have lost 3 lbs in 2 weeks without trying.  I hope this continues.

Tamoxifen

My second opinion ophthalmologist called me yesterday.  She said that she had reviewed the tests from the other ophthalmologist and wants me to stop the Tamoxifen immediately.  I informed her that I had already stopped it 1 1/2 weeks ago.  She wants me to come back for an eye recheck in 2-4 months and not 4-6 weeks.  So, we are now looking for a recheck date of January.

The Tamoxifen side affects are manageable.  I have a bad headache, stomach ache and seem to be thirsty all the time.  Hopefully, these will reduce as I am off the medication  longer.

The Eyes Have It

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 3^rd.  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 6^th 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 21^st, 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 24^th.  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 27^th, 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, 28^th, 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.