Saturday, August 29, 2009

CT Scans

Yesterday I had CT scans of the chest, abdomen and pelvis. I had to drink 3 large cups of something I suspect is radioactive. Two were mixed with some type of coke syrup and the third was a chalky substance, maybe barium? They had lollipops to kill the taste so you can get it all down. They did part of the procedure with no IV contrast and part of it with the contrast. All in all not so bad but of course they don't give you the results. They just leave you to obsess about the possibility that the cancer has spread to all your vital organs. A woman on one of the breast cancer sites said she felt the waiting was like being eaten very slowly by sharks. I agree.

I spoke to Laura McGinty yesterday, She is a very close friend of my cousin Carol Gibson. She works for a company called Pinnacle Care . They are a medical consulting company and an advocacy for people seeking specialists in a particular area or coordination of their medical care. She able to give me some names of doctors at Sloan Kettering. One in particular in an oncologist by the name of Dr. Kimberly Van Zee. I called Sloan and they said I had to see the surgeon prior to making an appointment with an oncologist. At least now I have info when I am ready to roll on that. Thanks Laura and Carol Ann!

Thursday, August 27, 2009

Smudge the Wonder Dog

I took Smudge to the vet yesterday. I just wanted to get his checkup out of the way because I am pretty certain I will be busy later. The vet noticed that he had lost 14.8 pounds since October. He said it was something to be very concerned about. He took some blood to see if he is diabetic. Of course it is a big deal to me because I can't handle anything happening to him right now (or ever).

I called him today to get the results and everything is normal. He wants me to put him on puppy food due to the higher calorie count. He used to get cold cuts and tons of people food but I put him on (mostly)dog food because I thought it would be healthier. I really can't believe how much he eats but he does run about 12 hours a day.

The vet told me to get a urine sample and bring it in just to be sure but he thinks all is well. I asked him how you get a urine sample from a dog, a male dog at that. He said to follow him around with a container and try to catch it. It sounds like it could be something out of America's Funniest Home Videos.

So since Smudge is the world's best dog I am thrilled that he is ok. The thought of that too, uuugghh, too much.

Wednesday, August 26, 2009

Tumor Hormone Status

I found out the hormone status of the tumor today. It is estrogen receptor negative (ER-) (bad) progesterone receptor negative (PR-) (bad) and human epidermal growth factor receptor positive (HER2+) (waaaaaaaaayyyy bad). What does this mean? ER- and PR- means the tumor won't respond to hormonal therapy. HER2+ means that the tumor is especially aggressive. In about 25% of women with breast cancer there is an alteration to the HER2 gene that produces an increased amount of the growth factor receptor protein on the tumor cell surface. This causes the cells to divide, multiply and grow more radipdly than normal. It causes more aggressive disease, poorer prognosis, more liklihood of recurrence, and decreased survival compared to HER2 negative disease. The only positive thing is that the HER2+ disease can be treated with herceptin. It will be in addition to chemotherapy. I will need the herceptin for an entire year. It is usually infused every three weeks. It is a dangerous drug and can cause severe heart and lung issues.

On a brighter note, I went to the Jimmy Buffet concert at the beach, it was awesome. Thanks Bob! and Colleen for watching baby J.

Tuesday, August 25, 2009

MRI Results :(

The radiologist called me today to discuss my MRI results. She said there are four areas in the right breast they are concerned with. This is two more than the mammogram or sonogram discovered. She wanted to schedule biopsies for the areas. I said no. I think she didn't get it. I said no. It won't be necessary. I just want it off. In fact, I just want them both off. She advised me too call my surgeon to discuss it.

I called my surgeon's office. They told me I could come in at 4:30 to discuss it with the doctor.

At 4:30 I saw Dr. Maurer. I asked her if it was necessary to biopsy the areas if I decided to go with a mastectomy. She said it was not, and that it would all be tested by the pathologist after it was removed. I told her I wanted them both off. She said ok.

They went through a bunch of things with me and then gave me a payment sheet. I have to come up with $29,000 and that doesn't include the surgery for the nodes if it is necessary. I do not have anywhere near that kind of money. I don't think I can go with Dr. Maurer.

If I go to Sloan Kettering it is completely free, insurance covers every penny. The problem with that is that I have to wait until September 11th for the appointment with their surgeon, Dr. Lisa Sclafani. She is supposed to be awesome but she is on vacation right now. I know it is not that far away, but I feel like I want this cancer out NOW. It is freaking me out that it is in there.

Dr. Maurer said the cells that started this cancer were probably in me for 5 or 6 years before they were large enough to discover. She agrees that it is growing but doesn't think a few weeks are a big deal. That is pretty much what everyone says, but I still want it out asap.

I am going to call Sloan tomorrow and see if I can get an appointment with a different surgeon. I hope they can see me sooner than 9/11.

Saturday, August 22, 2009

Fertility drugs and breast cancer

The million dollar question: Did the fertility drugs cause this breast cancer? My opinion, probably. If I have the BRCA gene mutation my lifetime chance for getting breast cancer is 85%. There is a good chance it sped it up though. To get Julianna I did 6 iuis and 3 ivfs. After her birth to try for a second I did 2 iuis and 3 ivfs. The last ivf was in June. If I knew about this ahead of time I still would have done it to get Julianna. However, I would have stopped there.

My good friend Maddy works in an alternative medicine practice and they treat a lot of breast cancer patients. She said in recent weeks they have seen seven young women who have recently completed treatment for infertility. She suggests that all women who are about start infertility treatment should be tested for BRCA gene mutation. I agree that it would be a great idea. They should also test women who are using these drugs to be egg donors. Everyone should know the risk before proceeding.

My fertility doctors said they did not believe there was increased risk. My breast surgeon thinks there is. She said no one goes back to a fertility doctor to tell them they have breast cancer, but plenty of people with breast cancer come to her and tell her they used fertility drugs.

Infertility treatment is a huge business. I am sure they don't want women to know about the risks. I am sorry I was not more informed, but I still believe getting Julianna was worth it. Even if I knew I would get breast cancer I would still have done it in order to get her.

Friday, August 21, 2009

Journey so far, continued

August 16, 2009 - I spoke to my cousin Lisa. She was diagnosed with breast cancer four years ago. She is two years younger than me. She told me that she has the BRCA2 gene mutation.

August 18, 2009 - I went back to Dr. Maurer. She said this is a very small cancer and can probably be treated with a lumpectomy and radiation. I told her my cousin had the gene mutation. She said I needed to be tested immediately but it takes a few weeks to come back. If I have the gene mutation. I need a double mastectomy and my ovaries removed. She also suspects my Mom had breast cancer that went to the bone and not a type of bone cancer. We have all suspected this. I leave her office with a pile of prescriptions for tests. I pray that it hasn't gone anywhere else.

August 20, 2009 - I went for my genetic counseling appointment. The counselor was excellent. Her name is Bhuma Krishnamachari. He recently moved to NY from Chicago. She really knew her stuff. She told me the lifetime breast cancer risk if you have the gene mutation is 85%. If you have your ovaries removed premenopausally you can reduced that risk by 90%. That puts the risk around 4%. The risk for ovarian cancer and pancreatic cancer is also higher if you have the gene mutation. They drew the blood and will let me know the results in a few weeks.

August 21, 2009 - My Dad and Betty took Julianna and I had to go for an MRI of both breasts and a full body bone scan. I had to have an IV for contrast. After the MRI I had to go to the bone scan place. They injected a radioactive substance. I had to come back in three hours after drinking a lot of fluid. They need you to wait three hours so the radioactive substance has time to get into the bone. The tech was really nice and compassionate. She was in nuclear medicine for 44 years. After the scan I saw my skeleton on the screen in various views. I thought it was pretty neat to see. They told me before I left that it was fine but that is not the official report yet. They did see an inflammation in my lower jaw right where I have a crown that is bothering me. Interesting that they can pick that up.

I have to say all the medical people I have seen so far have been really great. I am lucky that I have encountered them even though it is for a bad reason. The waiting is really hard. The hardest part so far. All my friends and family have been so great. Thank you all for that. I really do appreciate it.

My journey so far...

I have started this blog because so many of my friends said it would be a good idea to document everything and because it is easier than repeating what is happening everyday over and over again.

In July I felt something strange in my right breast. It didn't feel exactly like a lump, more like a thickening and certainly not "right". I was going away and having tons of people to my lake house so I figured I would get it checked out when I got back if it was still there. I got back and it was till there. I called a breast surgeon, Dr. Virginia Maurer. They gave me an appointment for the next morning.

Dr. Maurer is awesome. She checked it. She said she didn't like it and did a fine needle aspiration in the office. It was an 18 gauge needle, not so fine in my opinion, and really hurt a lot. That was on Thursday August 6. She also got me an appointment for a mammogram and sonogram for Tuesday August 11th.

On Tuesday August 11th I went for the mammogram and sonogram. The spot was visible on the mammogram but it was extremely evident on the sonogram. It measured 11 x 11 x13mm and there was a second spot almost on top of it that measured 4 x 4 x 5 mm. The radiologist said it was very suspicious and wanted to biopsy it the next morning.

The next morning I went for the biopsy. The number the area and made a small incision with a scalpel. They then inserted a probe type of device. It made a loud clicking noise and sounded almost like an ear piercing gun. They took 2 or 3 samples. I watched the whole thing on the sonogram screen. They also inserted a titanium seed to mark the spot of the biopsy. After the procedure they did a quick mammogram so they could see if the seed was visible. It was and I was sent home with an icepack.

The next day I called Dr. Maurer's office to find out about the fine needle aspiration biopsy. They said it showed no evidence of malignancy. Yippie!!! I was in the clear. What was the likelihood that this would be negative and the other could be positive. Slim to none I figured. WRONG. I found out on Friday August 14 that it was positive and that I have breast cancer.

Hearing this made me feel like I just couldn't catch my breath. My life is awesome. How could this be happening? It took me so much time in fertility treatments to have Julianna. She is here and the light of my life. I was trying to get pregnant with a second baby. I know now that I can't try for another and that is the biggest blow of all. I don't want Julianna to be alone, but most of all I want to be with her as she grows up.