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.

Finally time

I had my oncologist check up last month.  All blood work looked great.  I had my mammogram a few weeks ago and it also check out great.  I had a check up with the breast surgeon and she gave me the all clear for my surgery next week.  I see her again in April.

I go in for surgery on Tuesday, December 6^th for my “finishing” surgery.  They are fixing my scars and doing a fat transfer to make the reconstructed breast look more like the real one.  I will be out of work for 4 days.  It’s been 2 years since the mastectomy.  I can’t wait!

I had my 6 month check up for my ovaries 2 weeks ago and I have another hemorrhagic cyst again.  I know it is from the Tamoxifen, but at least the cysts are not causing much pain.  Gyn was surprised when I told her I didn’t have any.  I see her tonight for my check up.

Tests, Tests and More Tests

Sorry I haven't updated lately.  A lot has been going on.  I saw my breast surgeon for my check up and everything was good with that.  I had my repeat blood work for the liver function and my levels are back down to normal.  Hooray.

I did finally get a uterine U/S per the request of my Oncologist and of course, they found something.  I have a small fibroid at the top of my uterus that is about 1 cm.  That isn't too much to worry about my gynecologist said, but they also found a 4 1/2 cm hemorrhagic ovarian cyst on my right side.  Right now the cyst is bleeding into itself and not out.  I have to go back in 6 weeks for another U/S to see if it shrinks.  My guess if it doesn't, it mean surgery.  Hopefully, it will shrink. 

The Oncologist also wants me to get a colonoscopy, so I have that scheduled for May 13.

My MIL is also not doing well right now.  She can no longer swallow from her Parkinsons.  It is really hard to see her this way.  She is only on pain meds and she hasn't eaten since Tuesday.

Fatty Liver?

Well the good thing is that I don't have liver cancer, but I have a Fatty Liver.  They are not sure what they are going to do about it now.  I have to repeat my blood test in a few weeks to see if it resolves or gets higher.

In the meantime, I called my Gastroenterologist to see what he has to say and I am going to do some more research into it.  I did see one thing that Tamoxifen can cause this, but I don't think the oncologist will take me off it yet.

Oncologist Update

I had my 4 month check up at the oncologist on Wednesday and a check up with my endocrinologist as well.  My endocrinologist was happy with my progress and my weight loss.  She was going to take blood for some tests, but I told her that the oncologist will be taking some later.  She told me to have the other order piggy backed on to the oncologist’s testing.  Hooray…only have to have blood drawn once.  I don’t have to go back to see her for 6 months.

I saw the oncologist.  She was also happy with my progress.  My symptoms from the Tamoxifen have decreased.  It is nice not having a hot flash every day.  She wants me to see my GYN to have a ultrasound done on my uterus, etc, since I am on the Tamoxifen.  There is an increase risk of ovarian and uterine cancer on the drug.  I don’t have to go back for 6 months.

I went down to get my blood drawn.  I have bad problems with my veins to begin with.  I looked for my favorite phlebotomist, but she was not there.  It was already late in the day.  I didn’t think that there would be a problem since they are usually good there.  I was very wrong.  The lady stuck me once and that vein collapsed.  She started digging and blood started dripping out.  I asked her to stick me in another vein.  Same thing happens again…she says I am a bleeder.  No…bad phlebotomist.  She finally sticks me a third time to finish off the rest of the viles.  I am white as a ghost and ready to pass out.  They had to bring Rob in to get me.  At least the supervisor saw what happened and asked if I usually have problems with my veins.  I told her yes, but usually I don’t have a problem here.  She told to ask for her if the other good tech was not available.

I got a phone call on Thursday from the nurse at the oncologist.  They wanted me to get an ultrasound on my liver because I have elevated liver enzymes.  Great…another test.  She asked me about some meds I was on. . Hopefully, it is just because of some medication and not something more serious.  I went this morning to have the ultrasound done at NYU.  The tech told me that my doctor will get the results in a few days.  She didn’t tell me if the test went well or not.  Hopefully, the results will come back quickly.

Appointments Next Week

I have 2 appointments next week with the endocrinologist and the oncologist.  I am also still deciding if I am getting the Zometa IV for Calcium.  It has both good and bad side effects.  I still have to do a little more research.