Wednesday, September 24, 2008

Pre-battle plan

It's been two weeks since I found out about my suspicious lump from a routine mammogram. About nine years ago, a small lesion was found that the radiologist then thought was very early breast cancer ('you are lucky we caught it so early'). My Mom had cancer when she was 64. Her tumor was 2-2.5 cm. At that time, it was the size that they thought it could have spread. She had me choose a treatment plan for her as it was too confusing for her. So we had the lump removed, followed by radiation for 6 weeks and tamoxifen for 5 years. She died 16 years later of Alzheimer's but seemed to have no recurrence of the cancer. So I am hoping that my smaller (1.6 cm at the largest dimension) tumor will be estrogen positive, thus more treatable. Since I used the wrong health care system for my insurance at the time and the holidays, it was a very long 2 months to wait for my biopsy. I could not think of anything else at the time other than my possible, painful death and how unfair it was. I was still pre-menopausal and I thought the cancer would be less treatable. But when I went to the surgeon, they took more films and told me that the lesion had been there for at least 5 years previously and it wasn't worth biopsying. They would just watch-every 3 months, then every 6 months, then every year with no changes. I skipped my annual mammogram this May as I wanted no bad news before I went to Italy so it had been 16 months when I showed up 2 weeks ago. They kept repeating the scans in my right (bad) breast and then having me wait. I was there almost 3.5 hours. Finally I saw a radiologist who showed me the tumor by ultrasound. It looked like a grape. She was very cold and unhelpful. Suddenly I had to make a decision on what to do next, whether to go for a biopsy or to have the whole thing removed. Before I could decide this, I wanted to know my chances of this being benign. She refused to give me any odds or any information or any hope.She said she couldn't influence my decision one way or the other but wouldn't give me the info I needed to make a decision. She actually had an intern she was training there with her-teaching her really shitty bedside manner. I scheduled a biopsy for 13 days later. It seemed like a very long time to wait and meanwhile this thing is growing. I did say I would stop feeding it "Prem-Pro" and she said that would be a good idea.

I am so mad at myself about the Prem-Pro as most likely this tumor is estrogen positive. I hit menopause at the same time that the Women's Collective health project suddenly advised everyone to stop taking Prem-Pro immediately as there was a sharp increase in breast cancer and heart attacks with those taking it so I just dealt with the hot flashes and all the other nasty symptoms. Two years later, another study showed that the sharp increase in adverse effects was confined to the older than 60 group and that for the younger (group 50-60) hardly no negative effects and actually improved cardiovascular health and bone density were observed. I immediately got a prescription which I've been taking for 4 years and alot of my symptoms improved. I have to look up that study and make sure it wasn't sponsored by Wyeth. It has been pointed out to me that Prem-Pro didn't cause the cancer as it started years ago but I feel it definitely fed it.

When I got home from the mammogram, I immediately started my research. 80 to 90% of growths turn out to be benign. Why couldn't that bitch tell me that? I did realize that my odds were probably not as good as that but still it felt that there was a very good chance I didn't have cancer so why worry so much. I had wasted so much of my life 9 years ago fretting about my bad luck for nothing. Certainly I should have learned a lesson. So many of the things I have kept myself up at night with have disappeared. But I very well could have cancer and it is scary. Another issue was where to have it treated. If I do have cancer, they would probably take the lump out followed by radiation. Every day for 6 weeks. But there is a new procedure-Mammosite-that implants radiation for only 5 days with similar results. They don't do it at UM but someone at St. Joe's does it. So maybe I should go to St. Joe's. I have since read that Mammosite cherry picks its patients-small tumors, clean margins and no nodes-and that even without treatment, similar results would be obtained. Also, unlike what the site leads me to believe, you have to go in 2x a day for those 5 days and inserting the radiation seeds isn't easy.

So yesterday was the biopsy. I read about this in advance and read everything from didn't feel a thing and most excruciating pain ever. I was very nervous and trembled. I had to wait 45 minutes before seeing anyone. My fellow patients weren't chatty as the ones 2 weeks ago were. Then the topic was on one mother's concern about the evacuation of her adult daughter from coastal Texas from Hurricane Ike. Her daughter was using this as an opportunity to extract more money from her mom. Another women was upset that they told her she'd have to come back in 3 months.
A nurse, Carolyn (?-I forget names so fast) was very compassionate and held my hand most of the time giving me Kleenexes even when I didn't need them and hugging me every time negative stuff came up. She explained the procedure and showed me the little titanium triangle they would insert in my tumor to show others that it was the tumor biopsied. But in 2 weeks, that will probably be gone. The same tech who did my mammogram was there and 2 radiologists-both nice. One was a man my age who did the procedure. The woman mainly gave him advice on what to sample. But what they told me was very bad. It very much appeared to both of them that I have cancer because my lesion is so irregularly shaped. I am annoyed that the bitch 2 weeks ago didn't share that with me but I guess I got 2 weeks of hope that maybe I didn't have cancer. The tumor is less than an inch from my skin so I am thinking it is not the original lesion near my chest wall. Hopefully this will make it easier to remove. I still couldn't feel it-at best some diffuse thickening. I would not have discovered this on my own. The good news is that it is relatively small so it probably hasn't spread. It should be readily treatable and I should live through this.
I lay on my side with my right arm over my ear causing my glasses to dig into my arm. I had them removed but later asked for them back so I could see what they were talking about. The most painful part was them sticking needles in my breast to numb it. It was more creepy than painful. The noise to remove tissue samples was similar to a paper punch. They made the sound a few times so I wouldn't startle. They took 5 samples from various parts of the tumor. They looked like slightly bloody strings of vermicelli .5 cm long. The longest part of the procedure was putting in the marker. Afterwards I was told they would call me Thursday with the results. I said what would happen if they were benign. They said that was unlikely but they would consider it a false negative as my clinical symptoms are so consistent with cancer. Still he had a patient that happened to. He said how difficult it is to tell someone on the phone they have cancer so he is preparing me now. After another mammogram, I was packed with ice and told to come back in 45 minutes to make sure I wasn't bleeding. I had coffee with Steve shell shocked that I had cancer. Steve tried to be as helpful as he could. I am shell shocked and get by by not really thinking that this is happening.

The wound is healing. I'm not supposed to run, which is annoying as I just started to lose weight and get much better at running. I will go tomorrow anyways. I was allowed to take Tylenol for the pain which never has helped. I took half tablets of Viocodin which took care of everything. A day later, it is only slightly sore. The nurse is supposed to call today to see how I am and the pathology comes in tomorrow. I forgot to ask if its intraductal or intralobal.

Steve was nice and waited on me hand and foot. Shanna called and I told her the bad news. She'll be here Tuesday. Naomi however, could not find it in herself to be any nicer than usual and actually was quite bitchy. I was so sad that she couldn't find it in herself to be nice to me when I could be dying. This resulted in a huge fight with her stomping out of the house with Josh trying to moderate it by phone. Eventually I had to pick her up. She said that she doesn't like it when I feel sorry for myself and doesn't need anymore stress. She said of course she loves me and what do I think will happen if I'm not around and she has to deal with Dad? I said that even if this does kill me, it will take a while and I am just very afraid of the pain I'll have and the constant uncertainty that this thing will come back and spread.

So I think absurd thoughts-the worst one is that I will kill myself before cancer will. At this point, that is very stupid though if it gets to the point that it spreads to my bones....
But the odds allegedly are with me. The nurse called as I wrote this and said the pathology report might be done today.

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