I meant to post yesterday, because that was exactly one year from the day I discovered my lump. My, how time flies.
I have adopted a new philosophy and I think it would fit anyone in any walk or stage of life:
"Things could always be better. But things could always be worse."
So I had my doctor visit on Thursday and I told him I thought it was time we do some tests. "What tests do you want?" I said "whatever tests you normally do at this point?" he says, "we don't normally do any tests unless there are problems".
(Sidebar: really? Because how do you know if the cancer has come back? Isn't it better to know before it develops to the point that there are "problems"? I really don't know what is normal.)
Well, I say that me being paranoid is a problem. Luckily, he agreed - if only to pacify me. See, I knew being a troublemaker would pay off. Although the insurance co may decline to pay for the PET scan. He put that I am HER2+ which is aggressive and says that may get it done. Meantime I will have mammogram/ultrasound next week. They did blood tests for cancer markers on Thursday. I did not get a call with results yet and I forgot to ask when - they were closed on Friday anyway.
I am not as worried about getting a PET scan with doing these other tests. He said I would need all the tests anyway as sometimes the thicker tissue stuff doesn't show on the PET. I am going to see if I can go ahead and do the ovary scan now instead of waiting till August (again new ins. co, so maybe don't have to wait a year?).
Well at least I have gotten the ball rolling. I am still wanting a mastectomy on the other side and a hysterectomy, but if everything is OK would rather wait till later in the summer so I can do my fun stuff. If there is a problem I want them done NOW so I can be recovered in time to do my fun stuff.
After I get results I will call the surgeon and see what we can set up for later in the summer. I need to figure out my window between camps and trips and taking A. to college.
Another thing is from reading other blogs, I have learned that many (if not most, at least in the blogs I read) women who get Herceptin get it every 3 weeks instead of weekly. I am definitely going to ask about that. I would much rather lose a day every 3 weeks than every week, especially since I want to get a job. Putting that down to ask about this coming Tuesday.
I just want to live my life - Is that so hard. LOL
Hey Midnight. I was told the same thing about testing, they don't test unless you have symptoms. I wrestled around with that and finally accepted that. My cancer never showed up on mammogram until I had it nearly 2 years. I had a slightly elevated CA125 but when they scanned me looking for cancer.
ReplyDeleteI believe the reason they don't routinely test is because they don't find your cancers until it is stymptomatic. They can look all around your body but if they don't where to agressively look then they just kind of scan it, it that makes sense to you. Of course you had HER2, so that does in to look for breast cancer.
I'm wondering why you are having another mastectomy. I had cancer in one breast but had them take both. Did you not want both taken at the time, or was it just not offered. The reason I'm asking it to compile my own data. I have a lot of women ask me about cancer and treatmets. I find the doctors and nurses don't tell a lot of details. I was told it was because we are given so much to think about that they kind of decide what we can hear and how much. But it is good to know up front that chemo effects you for a year. Radiation damage can show up for the entire year after. Tissue expanders HURT, and you feel like you wear a concrete bra. So I'm wondering what they told you about getting a mastectomy.
I also tell women with a family history to get the Breast MRI, but schedule it 6 months after your mammogram. The reason being, that way you only have one mammy and one mri a year so insurances are happy. But scheduling them 6 month apart means a doctor is looking at your breast tissue every 6 months. My sisters get their mammy in Jan and the breast mri in July. So nothing goes undetected for more than 6 months.
You sound like you are doing better.
Hi Rose, Thanks for your comment!
ReplyDeleteAbout the mastectomy. They initially didn't offer it on the other side. We went in with the plan of doing a lumpectomy, test it while I am still under and mastectomy if it was positive. The surgery was scheduled for Monday morning with me going in for prep at 5:30. Over the weekend, I started thinking that I really would like the other side removed as well. But it was the weekend, and I was scheduled to go in at 5:30 AM. I figured the insurance co would not approve it on that short notice so I just didn't say anything. I mean when the surgeon came in to say hello before I was put under, I was twitching with wanting to say something.
Talking to others I can't believe I wasn't offered the option. I don't think I was, but I have to be honest and say maybe I just don't remember. Those days are a blur to me and all I can remember is wanting the lump OUT.
In retrospect of course I wish I had said something. I could have called the after hours line on the weekend. The worst he could say was no, right? Or I could have put off the first one till it was approved. But honestly I was afraid of causing anyone any trouble. I pushed for a quick surgery and then I am going to go putting it off? Who does that? LOL. I realize now how silly that is. Yet I still do the same thing now (watch for next entry).
I like the idea of waiting 6 months for the other. Mine was a fast-growing tumor and it had been only 6 months since my last gyn visit.