Calling all TNs
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Monikav - I am also BRCA1+. I was supposed to get a hysterectomy/oopherectomy 2 weeks ago, until I found out that I had breast cancer again. Damn TNC!!! Now I'm getting chemo and radiation (had BMX last year). The hyst/ooph will come later. I feel like I hit the cancer jackpot! LOL!
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By the way, I got my sister's very expensive human hair wig, which looks like my hair. I haven't tried it on yet. I am going to the wig salon tomorrow to try on some wigs they ordered for me. I fight my fine wavy/curly hair everyday, so it will be nice to not have to dry it and style it. It will be odd to not have it though. I find out this Thursday when I start chemo. I'm getting a echocardiogram this Thursday and my port goes in on Friday.
Has anyone tried the Brian Joseph's brow/lash gel? One of the girls from my work is using it (she's halfway through ACT) and still has her lashes and brows.
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I don't have a favorite cookie. They are all precious to me LOL But, I had nutter butters last night
and ice cold milk.having an oatmeal cream pie this morning. i can feel my ass getting bigger.
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Kittycat, I don't know about the gel for lashes and brows, I used brow power and stenciled my brows on. It was the part of getting ready for the day the took the longest. I have heard a human hair wig needs the same care as the hair growing off our heads. Supposedly it still needs frequent washing and styling. I had a synthetic wig which I washed in the sink every 3-4 days and hung up in the shower to dry at bedtime. When I woke up in the morning it was ready to wear.
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My eyelashes and brows didn't fall out until after I was done with chemo! I thought they were going to stick but they didn't!
On the good side though...I wore glasses and just penciled in my brows (my wig pretty much covered the eye brows also) and I don't think anyone even noticed! They were only gone a couple of weeks..and then came back nicely....It wasn't as bad as I thought it would be.
I too had the synthetic wig...very easy to care for....I used to set it outside on a table to dry....we called it the "Pope's Table" (for those of you familiar with the restaurant Bucca de Peppo).
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I was wondering how many of TNS are getting BRCA testing?
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I'm not...my paternal grandmother died of breast cancer in the early 60's...she was in her early 60's. I am however, going to talk to my ob/gyn about have my ovaries removed...I don't need them anymore..the chemo fried everything...
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I got the BRCA. It was negative, thank goodness as I have two very scared daughters.
I am reading your post and wondering if I am alone in the fact that I saw, first the surgeon, then the radiologist to see if I qualified for balloon type rads. and finally the onc. I was originally told I would probably only need surgery and maybe balloon rads. Oh well, wishful thinking. But I'm glad I went through the entire process at full strength and kicked som BC's butt.
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I was tested for BRCA and am negative.
Lorrie
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Lisa what are balloon rads?
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I saw the surgeon first also, who felt I had a fairly straight-forward case of early stage BC. It was after my first visit with him that I started to feel like things were going to Hell in a handbag.
Cookies?! Kookies?! Kooookeeez??!!
Bad day for me yesterday...too much bloodwork, too many doctors, had occipital nerve block for migraines and learned I will have to have a 24 hour ambulatory EEG for some "abnormalities" found on the EEG by my regular neurologist. Also wants to keep me on seizure meds for now.
He says not to worry... not mets in his opinion either, but definitely wants to monitor the seizure episode given my recent history.
I am emotionally drained and want off this ride. We head to Acadia in 10 days for a month of carriage driving and sailing and I need to be *SHARP*. Don't want any more train wrecks health-wise.
I hate this shit.
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Saw the surgeon first too...he said rads, probably no chemo...then saw the Onc. and he said EIGHT Sessions! Yikes! I had heard 4 was normal...but now I'm glad that I got what I did...
Heidi..you are starting to get white coat disease...I have had that for some time.
Get out of town and do your horse thing and have fun...you will be fine!
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White coat disease... I'll have to remember that.
But for today it's Xanax and bed. Too much going on in my head and afraid of another short-circuit.
Need my strength for driving those horses and sailing. My brain feels like toast today.
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Yes I saw the surgeon first (who said before surgery he thought I would be stage I or II with lumpectomy and rads) after the biopsy and then the onc. Atfer surgery and we got the pathology and the surgeon told me my stage, he thought chemo, rads then more chemo. Seeing my shell shocked face (I heard nothing after IIIc) he told me it was very treatable. I sometimes wonder if our first stop should have been the oncologist. The oncology nurses were shocked that the surgeon was telling me chemo-rads-chemo.
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Balloon rads it not the technical term. But is a way that they can give radiation by inserting a tube into the surgery site, drop seed like pellets of rads. directly to the tumor site after surgery. You only go for 5 visits I think. They do it twice for 5 days and then you are done. It's only used for smaller tumors. 1 cm or smaller is what I was told. We triple negs. know that since our tumors grow so fast that even if we are originally dx-ed at 1 cm. it generally larger by the time they remove it.
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Thankyou Lisa - I don't even think it's available here.
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I think that type of radiation is mammosite (?) - I may be incorrect.
Never had BRCA testing either as I was 62 at diagnose and the first one on both sides of my family to have cancer of any sort, so BC/BS refused. Am triple neg, so I thought they might do it. They told me it's more important that both my daughters have the testing since I now have this f#cking disease and their dad died at age 46 of esophageal cancer. God, I hate cancer.
Linda
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My oldest sister and I are both BRCA 2+. I don't think there's an age limit on getting BRCA testing. My parents are 78 and 84 and both are refusing to be tested. I can't imagine not helping my kids get all the information they need to stay alive and healthy. My dad's mother died of BC and my dad's had colon, kidney and skin cancer, so my geneticist is pretty darn sure the gene came from his side. My oldest daughter wants to be tested and my other three kids don't. It's their choice and I'll stand by them no matter what they choose...
Linda
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I also saw the surgeon first. After I was diagnosed (on a Tuesday), I was scheduled to meet with the surgeon that Thursday. He at first also recommended lumpectomy and radiation, but once he found out that I presented with swollen lymph nodes that story changed fast!! Met with Med Onc and she recommended 8 cycles of standard of care chemo or clinical trial (with standard of care chemo plus meds only approved for metastatic BC-Gemzar and Avastin). I went with the clinical trial and am so happy that I did. The chemo was hard but I am now NED---so it was definitely worth it!! SO rads begin prob third week of June (go for simulation 6/4 and takes week and a half for plan to be ready), and I start my final 10 doses of Avastin on 6/14. I also am BRCA -. It was recommended that I be tested since I was so young and had no family history. It was such a relief since I also have an 8 year old daughter.
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I don't qualify for genetic testing. I was 45 at diagnosis and without a family history I would have to be under 35 to qualify. So I haven't been tested. Good news is I did make some progress and got my vitamin D levels checked last week. My GP gave me the requisition and I'll get the results next week when I go for my annual checkup. She's also checking my estrogen levels to see if I'm in menopause because I've not had a period since January when I had my second chemo treatment,.
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Hello Girls,
I like this thread as well.
My situation is: diagnosed 3 years ago as Stage 1 TN: Had Mastectomy: Breast surgeon said no chemo: went to Onco. and he said 8 treatments of Adramyacin: Life was going great and on my 3 year cancerversary I found out that I had a lump on my right breast. this time ER/PR positive. Mastectomy, and/4 treatments of Taxotere. I did have the BRCA testing which was negative. Now I am just taking the tamoxifen.
But, I do have something that keeps me up sometimes. Do any of you worry about the grade of cancer. I am a grade 3, and I feel that because of it, that this will be coming back. idk....
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As I am rereading these post.. I see that the majority of us are grade 3:
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Titan, I loved your Pope's Table reference. When I'd get home from work I would immediately take off my wig and hang it on the back of a dining chair. I then place my sunglasses through the hair, and "Cousin It" was visiting. My boys thought it was funny then, but I brought out "Cousin" a couple years ago, and they really didn't want to see him.
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Brendaw, because TN cancers are aggressive and tend to grow fast with cells which do not resemble normal cells at all, they are usually graded a 3.
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Gilly..I know I probably shouldn't ask..but is that your natural hair color? I think it is really pretty..I have a brother that has red hair/green eyes, another brother brown hair (well bald now), hazel eyes and I'm brown hair (well. carmel/blonde now) brown eyes...My parents were dairy farmers and I still wonder about the old milk man..
Yeah..have heard about the mammosite/balloon rads...I believe you have to have the surgery for it during your lumpectomy..b-4 I found out about it the lump was done...I think that would have been really cool to have that done...alot less time consuming.
And yes..the grade 3 thing...well...it does suck..but since tn grows so fast I wonder if our lumps really didn't have time to even be grade 1 or 2..the thing we have to remember..and I keep going over this in my mind again and again..is that we all had the dang thing taken out, we endured massive treatments of chemo, we endured rads...hopefully we took care of the sucker..
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Really interesting about the balloon rads--never heard of that. When my sister had brain cancer, Johns Hopkins was researching a chemo "wafer" that was put directly on the site. I wish more cancer tx's were targeted.
I imagine I don't qualify for the BRCA testing; I don't have a daughter, but am concerned about my 4 nieces.
Heidi: What kind of horses do you drive? I hope getting out with your horses gives you a lift the way working with my dogs does for me. Really allows me to take my mind off all this.
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I asked about the "Pellets" being inserted for rads, and I was told then (six years ago) that it wqasn't an option for BC.
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This may sound like a stupid question but does anybody know if our tumors perhaps lost their receptors as they mutated? Or, did they have no receptors right fro the start? I've often wondered about this. Does anybody know or have a theory?
Sherri
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retrievermom,
Here's a photo of my father/son pair:
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I got tested - am BRCA negative. Don't get me wrong, it's fine but part of me is like, yay, yet another non-answer.
I think there should be a rule that surgeons should not be allowed to discuss cancer. Seriously. Like as soon they find out after a positive biopsy, they should give you the news and have an oncologist immediately available or something because they tell you what little they don't know and FREAK you out even more. The surgeon that did my biopsy and gave me the news (she was a recommended breast specialist) was pretty certain that I should schedule my double mastectomy immediately. I of course saw an oncologist shortly thereafter who said I should do six rounds of chemo, do genetic testing, then we can reassess whether we can do a lumpectomy (because it's not near the chest wall) and mastectomy/double mx depending on results. Night and Day!
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