Oncologist Visit

I finally stopped my boycott of all doctors on Wednesday. My tamoxifen prescription ran out and I had to make an appointment to get a new one. I had a good run though from the beginning of March until this week. I made it almost through the whole appointment before he gave me a hard time about the length of time between visits. I put my head down like I felt badly about it and promised it wouldn’t happen again. But between you and me, it was worth it! It has been a great doctor free spring and summer.


But I am now back in the medical fold. He suggested that I change from tamoxifen to an aromatase inhibitor (AI). He said that there is a better chance for survival on an AI for someone with my cancer history and since I had the hysterectomy and ovary removal. In an oversimplified nutshell – tamoxifen stops your body’s ability to use estrogen while AIs stop the body from making any estrogen. Of course ovaries are the main source of estrogen in a female body so women with their ovaries who have not gone through menopause cannot take them. But in the case of those of us without ovaries, the body also makes estrogen in other ways. Taking an AI will stop those other ways. My cancer was estrogen positive – meaning it fed and grew off of estrogen. So, if there is no estrogen, any cancer cells left in my body will not grow. OK – simple enough, I buy it. I tried to read the different studies concerning tamoxifen vs. aromatase inhibitors. One I read said that in women who have been on tamoxifen for two to three years and then switch to an AI, there is a 50% better long term survival rate. I don’t know who did the study, maybe it was the manufacturer of the AI I am going to be taking but I like the sound of that. Other studies show the opposite. So, it all boils down to my decision. Through it all I have always taken my doctor’s advice and I start taking letrozole on Monday.


The list of potential side effects is as long as the tamoxifen list and then some. I hope I do not have the hair thinning, the debilitating joint pain, the brain fog, or the sky high cholesterol that others complain of. I was worried about how much it was going to cost but it seems that there has been a generic version since last year. My pharmacist called today and said that it will only cost me $15 a month. Awesome! AIs do cause the body to lose bone density each year so I will have to go twice a year to have some sort of infusion to counteract the osteoporosis. I have my first one next week and I’ll find out more about it, I didn’t ask. My oncologist did say that I may feel achy like I have the flu for a few days afterwards. I can handle that. It is no chemo. I also go back in three months (I promised!) and we will discuss any side effects I am having and I can decide then whether I want to change back to tamoxifen again.


We also discussed how long I was going to continue to take medication. He had told me when I started on tamoxifen that it would only be for five years. I asked about the letrozole hoping it would be the same. He said that there have been some promising studies out of Europe showing that ten years is the most beneficial for both tamoxifen and AIs. He said we could discuss it again in three years.


So, I went to the doctor’s office this week thinking I had two years left of taking a medication which is causing me no bad side effects to seven years of taking a medication that could cause me all sorts of problems. See why I avoid doctors as much as I can?


But of course, if there is any chance that this new medication can give me a large chance of survival, I am obviously going to give it a try. And after spending too much time reading about the negative side effects, I’ve decided to not worry about them. Life is too short for worrying about something that may not happen. I’ll let you know………

Today's Appointment with the Oncologist

It was nice to see Angel Nancy again. She stopped by while I was waiting in exam room one. I was all set for this appointment - I had my questions in a list, I visualized on the way over being calm and reasonable with the doctor, I took deep breaths, and had psyched myself up to keep my cool and stay focused. There must be something about that building though - I got out of my car and I started sweating and trembling. My hands were shaking so hard I could barely sign in. (I'll have to work on that because I'll be spending some quality time there.) So like I said , it was very nice to have Nancy stop by, calm me down, and laugh at my lame attempts at jokes. By the time the Doctor walked in I had most of my chemo procedural questions answered and I could ask him some reasonably intelligent medical questions.

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We got my oncotype test results back and they came out exactly as he predicted - I scored a 19. This is just barely into the average range - a few points lower and I would be in the low risk for recurrence range with a slow growing cancer. But average risk is better then high risk I'm thinking so it is not necessarily all bad news. The decision had already been pretty much made but these results sealed the deal - I will be going through chemotherapy. Since I have decided to not participate in the clinical trial he recommended that I do four treatments with Taxotere/Cytoxan. I'm with you - did we hear that right?? He said it again when I asked him to repeat it - only FOUR treatments - one every three weeks. That's six weeks shorter than I was expecting. If any of you had listened closely in a quiet moment this afternoon you might have heard me singing at the top of my lungs and dancing the whole way home. Probably not many people celebrate finding out they are doing chemo but I really really needed some good news and I took those six weeks and partied with them. Scheduling it all out - all of the treatments of chemo and radiation will be finished by Christmas - CHRISTMAS!! Huge New Year's Eve Party at my house and all of you are invited!

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And the winner of the "who gets to go with Linda to her first chemo" award is - drum roll please - opening the envelope - it's my little sister!! Yep - first chemo is on August 26th - two days after she gets here and one day after our Mother's birthday. Happy Early Birthday Mom!

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The Doctor held one hand up high and said "this is a very aggressive chemo treatment plan", he held the other low putting a couple of feet between the top and bottom hand "this is a nonaggressive chemo treatment", he moved the top hand down a couple of inches "this is the treatment we are using on you". He said one of the good points other than we are being aggressive is that with this TC treatment the side effects aren't usually as harsh as some other treatments can be. I will still lose the hair (blahblahblah - you have heard all about this ad nauseam) plus there can be some swelling. Oh great I have a few months of looking like Uncle Fester ahead of me. But hey that's six weeks less than I thought................ (sorry I took a break and did a little soft shoe)!!! He gave me a few prescriptions to be filled before the big day and sent me out to make all of the appointments. The first chemo trip will take most of the day with the different blood work that needs to be done and a bit of an orientation class. Once we start though he said it would only be a few hours in the chair.

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So quick recap, port put in next Tuesday August 19th, then the first chemo session on the 26th, hair all out by September 12th, second chemo the 16th of September, the third on October 7th, and the LAST treatment on October 28th. I should start radiation a couple of weeks after that (a little mini vacation for them from seeing me!) and even radiation should be finished by my birthday. I'm telling you - figuring out the whole logistics of this breast cancer thing is like having an annoying second job. I just wish it paid better. If I lose my day planner I'll never remember everything.

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So, those are the dates - anyone who wants to join Linda for a chemo session had better sign up soon because it's going to be over before any of us know it. Just having a game plan and moving forward to a cure is very encouraging for me.

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I'll be in Flagstaff tomorrow night getting ready for the Climb to Conquer Cancer hike on Saturday bright and early. I picked up our T-shirts today and they said 4,000 people will be there. I was thinking 500 - 4,000 seems like a huge number. I guess it just shows how many people have their lives touched somehow by cancer - or maybe they just have good food at the top of the mountain. I'll post pics later in the weekend.

Thanks Everyone!

A Day Spent on the Interwebs

Wow - lots of info on breast cancer but there sure aren't any answers are there? I've been asked to participate in a trial study (IRB# 06-090; TAC vs. TC for Adjuvant Breast Cancer Treatment). TAC and TC are types of chemo. Adjuvant Treatment is a form of treatment added to the primary treatment to keep the cancer from returning. The primary treatment for breast cancer is the surgery to remove the tumor. Cancer is sneaky though and can return even though the tumor has been removed. There are two types of adjuvant treatments - local and systemic. Local treatments are geared towards the area where the tumor was initially found - in my case since I chose a lumpectomy rather than a mastectomy I will have six weeks of radiation. Unfortunately (it's interesting how often that word is used when reading about cancer treatments) surgery and radiation do not guarantee that the cancer cells were completely removed. Some cells could have been left behind in the surgery area (which hopefully - another word I've seen a bunch - radiation will take care of ) or some may have broken off and traveled to other parts of the body though the blood stream or lymphatic system. These cells can lay dormant for awhile and then start growing again. Systemic treatments will hopefully (there I go again) take care of these. The oncologists looked at all of the results of the tests done on my tumor. I think it was mostly because of the size of the tumor (2.9 cms) that systemic adjuvant therapy was recommended to destroy any cancer cells that may be lurking throughout my body - in this case chemotherapy and hormone medications. Cancer cells are fast growing cells and the chemo drugs find these cells and kill them. Unfortunately (see there it is again) there are also other fast growing cells that are "good" cells in the body. Chemo does not distinguish between the "good" and "bad" cells and will also destroy both of them - such as hair cells and the cells that are found in your mouth. Fortunately (hey we like that word!) the "good" cells don't die off forever and will grow back while hopefully (!) the cancer cells will all be killed for good.

My oncologist asked me on Tuesday if I would be willing to participate in a clinical study of two different types of chemo drugs. TC has been used for awhile now and has been shown to be effective in case such as mine - low grade (II), early stage (II), estrogen/progesterone receptor positive, Her2 negative, etc. etc. etc. TAC is a newer drug that they are testing that has shown much promise. My medical oncologist pointed out that the treatments that are available today for me were tested by the ladies who have come before me. I initially thought that maybe one of the good things that might come out of this is that I could help those that come after me. (Never ending cycle it seems). But, he pointed out that the patients in the study are very regimented. For instance during chemo a shot is given afterwards to help keep the number of white blood cells up to healthy levels. This shot has to be given to a clinical study participant the day after chemo - while if I'm not in the study he would be able to give me the shot the same day of chemo. This would save me another half day missed from work and a three hour round trip drive. It was later pointed out to me that patients on TAC also have an increased risk of heart problems. It's been a tough decision (almost harder than the decision to have chemo) but I've decided not to participate in the trial study. My thanks go out to the ladies who have gone before me and I would love to help those coming after but I really need/enjoy my job and worry I will miss too much work as it is. Also, with the heart disease that runs in my family I worry about that side affect also. sigh.... nothing is easy about this.

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I'm getting to learn all sorts of new words. None of them are much fun - febrile neutropenia (fever and drop in white blood cells), alopecia (hair loss), stomatitis (inflammation of the mucous lining of any of the structures of the mouth), leukocytopenia (low white blood cell counts), skin toxicities (just like it sounds), invasive ductal carcinomas (what I had), dosimetrist (runs the radiation equipment and helps calculate dosages with the oncologists), and I won't even start listing all of the drugs out there. Not really enjoying the new words - none of them sound like fun.

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On another note - watched "Resident Evil: Apocalypse" today. Nothing like a good zombie movie to put things into perspective!

Tuesday's Appointments

If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell. ~Lance Armstrong


I liked both of my oncologists. Still processing everything but it looks like I will be starting chemo in a few weeks. It will be six treatments total with three weeks between each one. Once I start I will be finished in fifteen weeks. Then I will have a few weeks off before I start the six weeks of daily radiation treatments. Finally I will then take anti-estrogen meds for five years. Even with all of that the medical oncologist says I have just over a 10% of the cancer coming back within five years. Which means there is a well over 80% chance that I'll be just fine! My next appointment is August 14th.