MY IVF Breast Cancer Diary

Hello all,

 I am in the middle of my March appointments. I saw Dr. Oratz, the NYU Breast Cancer Oncologist, I had my mammogram, I saw Dr. Martorella, the endocrinologist and I saw Dr. Hollister yesterday. I will see Dr. Estabrook in early April. I also just took my estrogen metabolism 24 hour test and am waiting for the results to review with Dr. Veltmann.

 All is fine on the cancer front except that the lab forgot to run my cancer tumor markers. I must decide if I am willing to risk my veins again for the tumor marker test otherwise I have to wait until June. I think I will wait and then go back in for it. As you may know, I am unable to get blood from my right arm and reluctant to risk my left arm because of the lymphedema risk so the blood draw is a big consideration.

 My thyroid is not doing well again with the consequence that I am less able to tolerate the Tamoxifen that I must stay on for 2 ½ more years….Dr. Martorella is upping my thyroid dose and we will begin experimenting with that again. I have gained a lot of weight, am super fatigued again, the migraines are back and the night leg cramps too. Hopefully, we can fix my thyroid and be back on track again. Dr. Martorella says that the type of synthetic drugs that I am taken often wear off after a quarter or so and the doses must be upped until the body finds the correct level. We have agreed that I will move to dessicated animal thyroid if this latest increase doesn’t work.

 I also have to go back on Actonel for the osteoporosis as the last medications appears to have finally worn off based on the test results. I will start that in 2 weeks and see how long I can tolerate….

 Dr. Hollister has said I must keep my eye on the ball….that all of these side effects from chemo, radiation and Tamoxifen are little price to pay for being alive. He said it a little more diplomatically than that. He said, in fact, that he is optimistic about my prognosis, that I look good and that he thinks I am doing fine.  His practice is now officially part of Greenwich Hospital.

Ron and I have decided that I should stop trying to work for the foreseeable future and focus on myself, the kids, house and the foundation. I think that that is enough for the time being but while it doesn’t represent a change to anyone else it is a super big change in mindset for myself….

 All is well. I am really looking forward to partying in Boston next week.

Love, Babs

 P.S. I have gained over 10 pounds in the last several weeks.

P.S.S. I had the best mammogram ever because I put the internet radio comedy channel on speaker phone during the ultrasound and paid attention to that instead of listening to the clicking of the ultrasound technician while she measured all the cysts…potential tumors…..

March is the big month. March marks 3 years of survivorship. I really prefer to celebrate the last day of September which marks the last day of my radiation treatment but March turns out always to be a symbolic month as well. The veins in my right arm have completely given out and I am still trying not to use my left arm. I already have breast lymphedema and I really really don’t want arm lymphedema so I save up all my blood work for once a quarter now when Dr. Hollister takes my cancer/tumor markers. My veins giving out has turned out to be a bit of a mixed blessing. I am no longer able to monitor various ailments more closely because the blood draw is so difficult so it means I neglect some things.

 Like my thyroid for example. I was doing really well until Christmas for a time of about 3 months and then it started again. First, the weight gain, then the excessively excessive sleeping and worst of all for the past 2 months, the migraines and intense Charlie horses from the Tamoxifen. I now I should have contacted my endocrinologist months ago but he needs data; he needs blood. So I pushed off my visit with him until today. He was well out of date on my health and I can’t believe I had not informed him about all my various ailments. 

The blood work showed the story that I already knew; I must up my thyroid dose AND go back on small doses of Actonel and keep upping the dose until I can tolerate higher doses. My bone density exam in June is sure to bring surprises.

 Dr. Martorella explained that when you take compounded hormones, it is not unusual for them to work well for a few months and then ebb off in effectiveness. He said that upping my dose was totally normal and I was still in mid-range. We talked about thyroid problems post chemo and radiation and he added information that I didn’t know. He said that infertility medications can really wreck havoc with your thyroid. He said that he treats woman who come in with thyroid issues post fertility treatmets.

 I am sure it is all linked in. We talked about insulin resistance and Metformin and wondered if all cancer patients would take Metformin in the future. He said let’s look at your glucose markers next quarter and see if you are a candidate. He is such a gentle man and a gentleman.

 After my appointment, I drive to Queens to buy a lot of specialty foods that my oldest has been asking for. Today will be our first appointment with a family therapist. I always knew this day would come but I had hoped he would be older. It is so painful to watch him suffer with anxiety and depression. I hope this therapist can help.

This is tough.

I finally saw Dr Oratz today. I had heard about her since the beginning but never gone to her. She was very thorough, put everything in the computer even though it took longer than making scribbles. She was half an hour late and apologized for it. Her office feels more like a chichi gyny office than an oncology place. No sick patients on view, no sign of an infusion room. She disputed Boyd’s stopping Vitamin D, she wants to send the tumor for oncotype testing in order to make a more informed decision about my hormonal treatment. She said that people talking about Aromatase Ihibitors after 2 years instead of 5 years was the result of pharmaceutical company propaganda. She had zero interest in the estrogen metabolism work. She said that it was laboratory work and until it had been in a clinical trial was of no relevance to her whatsoever. She discussed the disciline of losing weight extensively and she was very thin and tiny, I felt like a gross pig standing next to her. She meseasured me and said I was almost 58 inches which means I am shrinking.

She is the first oncologist to insist on the genomic testing of the tumor since my pathology report shows a mixed bag. She told me to go vegan and that all the protein in the world wasn’t going to help my immune system. She said I received much more chemo than normal. And that we have absolutely no way of knowing why I did not metabolize chemo normally. She told me to do yoga becuz she has a very bad back. She said it would change my metabolism. She agrees with a low glycemic vegetarian diet. We discussed bisphosphonates at length and it is time for me to figure it out. She said that the bisphosphnates were as important as the tamoxifen. No way to know if insurance will pay for the oncotype testing as she is using it in a way that has only been recommended for less than a year; in order to fine-tune hormonal therapy treatment.

 We discussed bisphosphonates again. She said it was just as important as the hormonal therapy and reduced risk by as much as 20%. I don’t know what study she is looking at and must ask her for it. 

It is all a bit discouraging as I seek a doctor to oversee my estrogen metabolism work. Dr Boyd was interested but didn’t respond to any of my emails at all and I imagine requires follow up. I haven’t even started and I am exhausted. It is disconcerting to be the one teaching the oncologists but I guess that is how it is with medicine. First the lab work and the studies, then the clinical trials and then the doctors…so they are the last ones to know in the chain of medical information?

Vic’s intense kidney stone pain for 6 weeks has brought him back to the person he was before almost 10 years on Wall Street changed him. He is appreciative and thankful for our life, our family and even our home. For the first time in many many years he is not complaining about anything. On the contrary he is seeing our children and perhaps me as I see us; as a gift from God.

And this is another Gift from God. To have my husband back no matter how briefly is a great gift.

The test results for the Estrogen Test and the other tests that Dr. Warshowsky ordered are back. Dr. Veltmann and I review at length. He disagrees with Dr. Boyd’s request for me to cut back on the B-vitamins and says I should just be more closely monitored by blood for all the supplement levels. We agree that I will be checked to see why my methylation levels are improving. He suspects that my stomach is not absorbing the nutrients properly.

But I have been told that for years about my ‘leaky gut’ syndrome about how my stomach does not absorb nutrients in a proper manner. I could have told him that a long time ago but since I have been taking the huge quantities of Calcium and the Calcitonin, my stomach has totally changed so no one asks me about it anymore.

We decide to cut back all the supplements I am taking to the original list. This is still extensive in my opinion but it is a return to something reasonable. After all, if the primary researcher of the theories that Dr. Veltmann is pursuing in treatment disagrees with all the supplements, and I have had absolutely no improvement from the original improvement, I see no harm in coming back to basics.

I see Dr. Boyd again but it is a relatively short visit as I tell him I have adjusted all the supplements. We agree that I should maintain a low glycemic index diet and try my utmost to lose weight.

I see Dr. Boyd again but it is a relatively short visit as I tell him I have adjusted all the supplements. We agree that I should maintain a low glycemic index diet and try my utmost to lose weight.

I am typically much more worried about diabetes than cancer. When you watch your own family members die of a particular disease the fear gets genetically transferred. Dr. Boyd’s tests for insulin resistance come back completely negative. I am greatly relieved. One less thing to worry about on the cancer emotional roller coaster.

9 months after filing to the IRS, the Hormonal Cancer Foundation has received 501c3 status and money raised will be tax deductible. I am ready to begin again the crusade to inform women and their doctors about testing estrogen metabolism before IVF or HRT and after too.