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NOT helping

Ok, my visit with my oncologist today did NOT help things. I don't know what I was expecting, but it certainly wasn't what I got.

I felt bad because Matthew was a bit sick, so he stayed out of school and had to go with me. Thank God he didn't really understand what we were talking about and we were able to use words he couldn't understand yet like 'improved mortality'.

Anyway, we changed me from Tamoxifen to Raloxifene, and I started it today. This is my chemopreventative regardless of what I decide to persue. I was expecting, upon hearing my concerns, that he would try to placate me. I figured I would get that we don't KNOW I'm going to get cancer, or when it would happen. There isn't a need for drastic measures, but that they are an option.

Instead, I get that because my mom has the same mutation in BRCA2 we have to assume that there is a link and that I will probably get it - we just don't know when. I might not get it for years, or I might already have microscopic cancer cells forming that could only be seen under a microscope, and because they are microfocal, even if you removed cells you might not find the cancers until they spread. Taking Tamoxifen or Raloxifene might slightly decrease my chance of getting it, but not by much and it doesn't change the mortality if I do. The only option I have that will significantly change my chances of breast cancer and reduce the mortality from it would be to get the mastectomy and oopherectomy.

Thanks. I was in tears by the time I left.

I certainly hope the breast cancer researcher at UT Southwestern is a bit more hopeful tomorrow, because I could sure use it.


On a related note, should I start putting the cancer talk behind a friends filter that only those interested see, or behind a cut so that you only see it if you want to? If a filter, who would want to be on it?



( 18 thoughts — Whatcha' think? )
Aug. 31st, 2006 03:43 pm (UTC)
i'm not touchy about the cancer talk at all.
whatever you do, please include me.

you have become pretty important to me, and i'd like to know what's going on with you and your boys.
Aug. 31st, 2006 06:03 pm (UTC)
Ditto. I want to be there to support and encourage you also!
Aug. 31st, 2006 04:30 pm (UTC)

I don't mind reading them. I am just hoping that you never have to experience cancer.

I can relate to the fear of genetics striking. Dan and I have a genetic mutation--he was tested for it, I wasn't but we are identical, so I have it too--that makes us prone to cancers of the central nervous/lymphatic systems/blood and possibly bone. Sometimes I wish I could just get rid of my brain and use a PDA instead so I would not have to deal with it any more.

I hope you will get better news! I also hope that whatever preventive measures you decide to take will keep you healthy.
Aug. 31st, 2006 05:33 pm (UTC)
I hope I don't have to ever experience it either. That's why I am willing to take drastic measures if I really need to. I feel like such a wuss when there are people out there who HAVE cancer, are dealing with it, and live just fine afterwards. It is just that there are people out there that have cancer, try to deal with it, and DON'T live afterwards. Chemo sucks in such a big way, to the point that my mother-in-law said if her breast cancer comes back she won't treat it with chemo. I am so scared of breast cancer, particularly. It terrifies me.

I look forward to talking to the oncologist tomorrow. He specializes in high risk patient analysis and working out the best plan for them. Hopefully, he will be able to help me make some sense out of this instead of the absolute terror my current guy put me into.

Aug. 31st, 2006 04:46 pm (UTC)
I hope that your family is supportive as you go through it. Several of the women in the last two generations of my family have had breast cancer and mastectomies as a result. There are a lot of support resources available to you.
Aug. 31st, 2006 05:37 pm (UTC)
I basically have two people in my family, outside of my kids. My mom, who thinks everything is about her and hasn't shown any sympathy yet, and my husband, who thinks that if they can't say definitively that I WILL get breast cancer, why take such drastic measures. He wants me to wait 5-10 years. I'm scared that in 5-10 years I'll have cancer. However, he has stated many times that it isn't his body, and he will support me in whatever decision I make.

I'm going to take him to one of my doctor's visits, and the research oncologist I am seeing tomorrow actually has that in his plan. He said he does his tests and meetings with me, and then meets with me and my husband to discuss things. I like that better than having to relay what a doctor says and then being unable to answer my husband's questions :)

For support, there is really only one place I've found for people who are high risk - FORCE (Facing our risk, something something) :) It's been great for information.

Were the women in your family pleased with their decisions to go with a mastectomy?
Aug. 31st, 2006 07:47 pm (UTC)
I don't know that they were presented with it as an option so much as "This is what we need to do now." Two of my aunts and my grandmother had it done. I don't think that any of them had reconstruction done. Grandmother's gone and I seldom catch up with either aunt, so I can't speak to the impact in their lives.
Aug. 31st, 2006 08:40 pm (UTC)
I think taking him to the appointments is a fantastic idea. It will help him understand what's going on and he can ask any questions he has. Also, him having a better knowledge of what you're going through will invariably help him support you.

I'm giving you some of my spoons to help get you through this awful time.

Aug. 31st, 2006 09:50 pm (UTC)
Thanks for the spoons. For once, I need mental spoons instead of physical. :)

Hey - have you gotten by the mall? Yep, I'm itching for some fun photos right now.

Aug. 31st, 2006 04:46 pm (UTC)
if you don't mind my comments, then please include me. I didn't sign onto your log because I wanted only the happy bits. I signed on the for whole you.
Aug. 31st, 2006 05:30 pm (UTC)
I agree. This is your life, what you're going through. Your friends are here to be supportive in whatever way we can. Whatever you're comfortable sharing is fine with me.

It's a huge wake-up call. I have another friend our age who just finished chemo with another type of cancer. You never believe it could hit anyone you know...until it does. But like someone else said, you do NOT have cancer. Don't psyche yourself out. Even while you're doing all the right things. And it sounds like you ARE doing all the right things, so even when it's very disheartening, try to remember that. :)
Aug. 31st, 2006 06:21 pm (UTC)
I hope your appointment tomorrow is productive and hopeful.

If you filter, I'd like to be on it. One of my friends that posts frequently about a chronic health condition simply puts talk of it behind a cut for the reader to decide whether they want to read it.
(Deleted comment)
Aug. 31st, 2006 07:18 pm (UTC)
I think that is where my husband is coming from. Not EVERYONE with a genetic mutation comes down with breast cancer, and we don't know why. While he's supportive, he initially voiced concerns over doing something radical when it wasn't a sure thing. I, on the other hand, know I have an anxiety disorder and WILL constantly live in fear of it.

I just hope I get more information from the doctor tomorrow that will help me make a decision.
Aug. 31st, 2006 06:29 pm (UTC)
please include me too. since i've started reading about your journey in this process, i've learned a lot and you are doing everyone a service by posting this.
Aug. 31st, 2006 08:05 pm (UTC)
put me ont he filter.
Also... have I dont your astrological chart? If not, would you mind if I did? I could take a look and see if I see anything there about cancer.

Would need your birth date, place and exact EXACT birth time.
Aug. 31st, 2006 09:51 pm (UTC)
That would be so nice, K!!! I'm trying to find my exact time of birth (WTF isn't this on my birth certificate from Huntsville Hospital?) and I will let you know when I have it.
Sep. 1st, 2006 12:58 am (UTC)
it should be on your birth certificate. If not, and your mother or father think they remember, then we can put it in as a guess unless they are absolutely crazily sure, then we will use it like if it were written.

I can do your chart without the birth time, but its best to have it.
Sep. 4th, 2006 04:55 am (UTC)
if you filter, i'd like to be on it. still praying...
( 18 thoughts — Whatcha' think? )