Bare "bones" report from doctor and other stuff (long)

Kathy & Rich
on 3/3/06 7:48 am - Fairfax, VA
Had a good doc's visit. I don't have the extreme signs of hypocalcemia which he tested me for...thumping your cheek in front of your jaw bone while you have your mouth open and putting a blood pressure cuff on your arm and inflating it. If you get big muscle movements, that's the more extreme case. Me... my fingers and toes tingle/hurt/numb. Also, very, very temperature sensitive. If I cross my legs... my foot will fall asleep and I end up having it slap around for a while before it comes back awake. I had foot cramps on Wednesday night. You know the one where your big toe goes a different direction then the other toes. That happened 3 times during the night. Owie! He ran blood work on both my calcium and PTH, as well as, my thyroid given that half of it is gone now. He'll call me Monday morning with the results. I am to take 1500 mg of calcium a day which is what I was doing anyway though I went lighter this week since I wasn't sure what he wanted me to take post the parathyroidectomy. As to whether I need thyroid medicine, he said that we can medicate you and help the half of your thyroid that is still there get the job done. Or we can skip medication and just monitor it and make sure the remaining half gets the job done. If we do the latter, the thyroid will grow larger though at any point - if we introduce meds... it'll shrink back down. He said those are the choices. I looked at him for his medical opinion (aka leanings) and he said "Well, put it this way... I only have half a thyroid and I take medicine." I guess what works for him works for me. Plus I really do not want an overworked, less than optimal thyroid - don't want tiredness and weight gain. No way, no how. We decided to see what my labs show. But I'm definitely leaning towards meds. Though I have to figure out where to fit it in. No thyroid meds with hours of calcium or iron. Doh! I took my steristrips off. Bad, Kathy! My wound is 3" long at the base of my neck. Feels like a fair amount of swelling there. Incision is scabbed over and is a pretty fine line. Not bad. Given my back surgery scar and lap scars on my belly (all 9 of them!)... should heal well. Talked to my sister a few times this week. She had some doctor's appointments. Her mastectomies are Tuesday. She was talking about our family history which is now much clearer since Dad found my mother's mother and aunt's autopsy reports. Uterine cancer in both, breast cancer in one. We thought the breast cancer was secondary - but the reading my sister has done... cancer in the breast usually starts there. So big changes in family history. My father's mother also had uterine cancer but she developed it at age 95. I'm not kidding. Nice genetics, we got eh? Not to mention the diabetes (mom, dad's brother), high blood pressure (mom, me), cataracts (Pam had them at age 33 and so did I - mom had them late 30s/40ish), coronary artery disease (mom and her father), strokes (mom) and dad has prostate cancer and basal cell carcinoma. My sisters regular doctor told her that she got dealt some pretty poor genes. I bring the family history up because my sister is debating on getting genetic testing done. In order for me to get it done, she has to do it first. If she is found to have the BRCA gene mutation(s), that ups the risk for breast cancer and ovarian cancer by leaps and bounds. Obviously, she already had breast cancer. She said if she had the gene mutation and given uterine cancer on both sides of the family - she will probably discuss having a prophyllatic hysterectomy with a oncologist gyn which is what her regular doctor now wants her to see. She is already past menopause at age 48. I'm only 3 years younger but no signs here yet. Anyway, no testing in the immediate future but she asked the question, if we find out she had the mutation and so do I, what do I do? Do I just do what I plan on doing now which is having yearly mammograms reviewed by an oncologist or do I do prophyllatic mastectomies and even a hysterectomy. Then we had to discuss if we get the tests done and we have mutations, what does that do your insurability. How do you keep the results out of medical files and the insurer's hands? From what my sister understands though, some insurances will pay for a hysterectomy without a medical reason given the mutation. It costs them less to do that surgery then for you to develop cancer and be treated. Anyway, obviously lots for us to ponder down the road. No worries now. I know, too long and too much info. But it is what it is! Kathy
Pat F.
on 3/3/06 8:46 am - Richmond, VA
Kathy glad your doctor's appointment went good. Hoping everything else is going good. I will keep you and your sister in my prayers. May God bless you and keep you both. With some luck you will not get the cancer just take it easy and try to keep your health the best that you can.
Kathy & Rich
on 3/4/06 1:08 am - Fairfax, VA
Thanks, "Mom"!
elizabethc03
on 3/3/06 12:31 pm - Cypress, TX
Kathy, I have to take synthroid for hypothyroidism...I take it at night which is actually not how you're supposed to take it but it works best for me. I take it an hour after my last snack for the night. I make sure I drink a whole glass of water after taking it so that it just doesn't sit there all night. I tried working it out with taking it in the morning and I never could get it and all my protein, vitamins and liquids in because of the way you have to schedule it with the 4 hour delay. I know it's not the "ideal" but so far my levels haven't changed so I guess it's not that big a deal. Good thing it's a tiny pill . Who do you have to see to inquire about genetic testing? A genetic counselor? I ask because I got a doozy when it comes to being screwed by genetics...My Mom's Mom had breast and uterine cancer, My maternal Grandfather had skin cancer and My paternal Grandmother had cancer of undetermined origin (by the time they found it, it was everywhere). I'm only 30 but I live in fear of developing cancer since I watched what it did to my Grandparents. Liz
Kathy & Rich
on 3/3/06 8:56 pm - Fairfax, VA
My understanding is that the genetic testing starts with someone who has cancer first. They get tested and then you as the family member - your results get put against theirs. Yes, you have to go for genetic counseling. Also, the first person's test is a few thousand dollars! Then the family member is around 400 or so. That's all I know about it! Thanks for the info on thyroid meds. I read what to not take it with and it is hard to fit that in. If it is working for ya thus far then nightime is just as good! Kathy
WendyNVA
on 3/3/06 9:31 pm - Va Beach, VA
Hey Kathy, WOW that sure is a lot to take in. Sounds like you've got a great head on your shoulder and you and sis are doing your research. Good for you. My family has always been of the belief, if it aint broke, dont fix it. Basically we deal with things when they happen. I hope you aren't over-stressing due to all the knowledge you've been handed recently. Glad to hear you're healing well from the surgery. As far as the thyroid, I have none left. I had one side irradicated and the other was dormant. They were hoping it would "awaken" after the irradication, but it didn't and I take synthroid daily. You're right, its a vitamin schedule nightmare LOL. I'm really faithful with my synthroid. It is the first thing I put in my mouth every morning. I still chew mine, cuz I like the taste (started post RNY and never stopped). I generally wait an hour to take my multi-vitamin along with my Zelnorm. Throughout the day I try to space my calcium out in 3 doses, 2 hours or more apart. Sometimes it works, sometimes I'm a bozo and forget it all. At night before bed, I take my Zelnorm and if Im up to it (i have a hard time with iron) my iron and Vite C. You'll find a schedule that works for ya Wendy
Kathy & Rich
on 3/4/06 12:01 am - Fairfax, VA
Hey, Wendy! I'm not a big stresser until someone tells me to. So, given the information we have about the family...it is just information at this point. The thing that I did change after speaking to my gyn - I took my mammogram films (knowing that I have calcifications already) to a breast surgeon given the change in family history. My films were deemed "boring" and "routine". Which is good. I can live with that! So, from now on ... the surgeon will order and review my films each year. Works for me! Given the information about uterine cancer on both sides of the family which I didn't know either (I thought it had been stomach cancer for both my grandmother and great aunt), I may talk to gyn about an endometrial biopsy every year. I had one done years and years ago for other reasons but all was fine. Thanks for the info on spreading out the vitamins and synthyroid. I figure that I can make it work. Luckily my work schedule and days are open enough that it isn't hard for me to take vitamins or drink protein shakes every couple of hours. I'm sure that doing some jobs - this would be very, very hard. Nice to see you! Thanks again, Kathy
nitengale
on 3/5/06 3:40 am - Leesburg, VA
RNY on 09/14/04 with
Genetic counseling is a wonderful thing and is highly recommended. The one thing your doc or your ins. comp. will not tell you is that once you have the genetic test done and it is positive for the mutation... and then a diagnosis of cancer is made...it is then considered pre existing and they may not cover your treatments. Talk to your ins comp before you do any genetic testing!!! Oncology care is so much more expensive than normal hospital care... stay healthy honey... love ya wiggles
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