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KR2165's Photo KR2165 SparkPoints: (19,656)
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11/17/09 3:24 P

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Glad I could help a bit and you keep hanging in there. I know this is a tough battle to fight, but you are not alone! Blessings to you and yours...Kelly

Kelly...originally from Denver, CO, but now a Texas girl by choice!

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MRSFIXIT's Photo MRSFIXIT SparkPoints: (0)
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11/15/09 10:53 P

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Well now, that makes sense! I guess once I'm in remission, I'll ask about seeing a genetics counselor. My oncologist said he'd refer me if I wanted him to. I guess he doesn't see the benefit, but maybe he's never actually talked to a counselor himself.

Donna (Upstate NY)

"Even monkeys fall out of trees."

"Suffering is the tuition one pays for a character degree."

"Accept your diagnosis, but never your prognosis."

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KR2165's Photo KR2165 SparkPoints: (19,656)
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11/15/09 10:15 P

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My genetic counselor explained it to me this way: The testing is not only for you but for family members and for the genetics research. It aids them in their research to see how these genes may be passed on. Even though both my maternal aunts have breast cancer my genetics counselor was very adamant about them being tested. I was tested and I'm negative. You're right, I may still get cancer, but I'm negative for the gene. She wants my aunts tested and the information sent to her. One aunt lives in Minnesota and the other in Colorado. I live in Texas. My counselor told me that the more information they have in a family tree, the better for the research to see why it is passed on or why it isn't. My aunt in Minnesota is having the testing done. I'm glad for her, myself, my mom, my other aunts that so far are cancer free and for my daughters not to mention my siblings. The genetics testing can also "hone in" on a particular gene if found and make it easier for them to identify problems in me, my sibs, my daughter, my aunts, my mom...etc. It's important in that respect.

Kelly...originally from Denver, CO, but now a Texas girl by choice!

Co-leader--Ladies Who Love Ink

"A diet is the penalty we pay for exceeding the feed limit"


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LORI2008's Photo LORI2008 Posts: 1,624
11/15/09 8:40 P

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I think you and your daughter should at least talk to a genetic counselor even if you decide not to have the test done. The counselor can educate you further so you are absolutely sure you're making the right decision. Also find out if there is a FORCE group near you. Most of the members are woman who know they are high risk but have not yet had cancer. They can provide you with tons of information as well.

Good luck!

Lori
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11/15/09 7:23 P

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Do I take it then that you agree with the information I've been given? I seem to get a lot of people telling me to get genetic testing, but I honestly don't see the benefit based on the information I've been given.

Donna (Upstate NY)

"Even monkeys fall out of trees."

"Suffering is the tuition one pays for a character degree."

"Accept your diagnosis, but never your prognosis."

home.roadrunner.com/~andydonna


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JOYSGARDEN's Photo JOYSGARDEN SparkPoints: (34,138)
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11/15/09 6:34 P

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That's true, and as long as she is aware of everything, she can make her decisions. Good luck to both of you...


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11/15/09 6:06 P

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Here's the way the genetic testing was explained to me...

Even if I tested positive, that doesn't mean my DD would test positive. Even if I tested negative, that doesn't mean my DD would test negative. So in either case, she'd need her own testing.

Now let's assume I do the testing & it comes out negative. That doesn't necessarily mean it isn't genetic. They only test for 2 genes: BRCA1 & BRCA2. Granted, these are the most common, but there are others. I'm told a family history is more important, & I have that.

Now let's say I test positive. What can I do at this point? Since the cancer is most likely to come back elsewhere, a mastectomy probably wouldn't be any kind of solution. I already KNOW I have an agressive form of cancer with it being triple-negative. I was at the beginning of menopause when this came back, so I won't be "using" my ovaries much longer anyway. I had already figured I would approach my oncologist about a complete histerectomy once I'm in remission, so I figure that's already in the works.

DD is now 21 & just got married this year. She's been saying for years that she doesn't want kids, & I don't think he does, either. I know they could change their minds, but I'm thinking that right now having her ovaries removed wouldn't freak her out. I don't, however, see her having her breasts removed unless she actually gets a diagnosis of breast cancer. We've talked about this, & I think it's something she would consider. Actually, the thought of reconstructive surgery to GIVE her breasts might be a bit enticing to her! (She didn't get my breasts, so maybe she won't get the cancer!) She does know she's high risk, & I hope to have my oncologist talk to her at an upcoming appointment.

Now, with this knowledge, what would the genetic testing do for me, or for her? I also understand there have been problems with insurance companies after getting a positive genetic test result. And with an unknown national health care plan possible, I'm not sure I'd want to take any chances with this.

Donna (Upstate NY)

"Even monkeys fall out of trees."

"Suffering is the tuition one pays for a character degree."

"Accept your diagnosis, but never your prognosis."

home.roadrunner.com/~andydonna


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JOYSGARDEN's Photo JOYSGARDEN SparkPoints: (34,138)
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11/15/09 4:24 P

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Donna, my thoughts and prayers are with you too. My prayer list keeps getting longer and longer!

Please have the genetic testing done. Do you want your daughter to maybe go thru what you have and are going thru? Or do you want to empower her to be aware, and be able to take care of her life. Best results would be that she doesn't have to worry, but.. I would do it for my daughter. I do worry about my granddaughter, as both her other grandma and I are bc survivors, but we will both encourage her to be vigilant and tested early. Good luck to you and to your daughter.


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KR2165's Photo KR2165 SparkPoints: (19,656)
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11/15/09 2:49 P

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Donna,

My thoughts and prayers are with you for sure. I also would encourage the genetic testing. For you and for your daughter. I don't think that being "scared" should be as much a concern as being thoroughly educated as to what y'all should be planning for...in your future as well as hers. I've gotten my genetic testing done and have advised my daughters to do the same as we have a family history on my mother's side of breast cancer and ovarian cancer, not to mention prostate cancer on my father's side. Please, do what's best for you and your daughter, but don't take this doctor's advise if your heart is telling you something different. I'm a nurse and believe strongly in standing up for patient advocacy. God bless! Kelly

Kelly...originally from Denver, CO, but now a Texas girl by choice!

Co-leader--Ladies Who Love Ink

"A diet is the penalty we pay for exceeding the feed limit"


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LORI2008's Photo LORI2008 Posts: 1,624
11/15/09 7:22 A

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Would only scare your daughter??????!!!! If your daughter is not an adult now, she should STRONGLY consider getting the genetic test as soon as she is old enough to make that decision for herself. She can do much to prevent ever getting cancer if she has that information early. It can also change how long she waits to get married, have children...... If she is positive, she may decide not to risk passing on the gene to her children and opt to have none. If she is positive, she'll have some very very hard decisions to make, but at least she'll have the choice to make them and not be blindsided when she discovers she has cancer. Triple negative bc can hit at any age! My aunt was 30 when had hers. I was 39 when I got mine.

There is a support group for women who are at risk or know they have a gene mutation. FORCE - Facing our Risk of Cancer Empowered. They have a website and you should be able to find a relatively close group to attend meetings.

With a strong family history of cancer and of the types you described, you should really consider getting the test.

I extend you all my hope and wishes of a journey that will lead to permanent remission!

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Lori
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11/15/09 1:24 A

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I posted an "intro" under the intro forum, so please read that BEFORE reading this. That way I won't have to repeat here what I've written there.

I originally reported a problem with my pcp in April, although I'd had my follow-up appointments in March with nothing found. From here, I had x-rays, a CT scan, a biopsy of a lymph node on my shoulder, PET scan (July by now!), was put on lots of meds, had a 2nd biopsy (this time 3 times through my breast bone, then into the lymph nodes -- Ouch!), had an appointment with an ENT specialist to get a scope through the nose, & finally a GROUP of doctors got together to make the determination that I did indeed have a recurrence of tnbc (triple negative breast cancer). So my treatment for metastatic breast cancer didn't start until 8/26.

I got the 1st 2 chemo treatments (Taxol with 5 pre-meds, which takes about 3 hours, 4 counting the bloodwork) through my arm while waiting for my port to be installed. Once the port was installed, I ended up in the hospital with a 6" blood clot on my arm. I ended up having to give myself shots for 3 days, & the pain in my arm was incredible. I'm now on Coumadin to prevent future blood clots & may have to take it for the rest of my life, or at least as long as I have a port.

The reason why I started with arm pain is that the lymph nodes are so swollen they've wrapped around arteries, veins, & nerves. This has caused "travelling" pain as the pain isn't always in the same location. It made sleeping in bed impossible, so we ended up buying a new chair for me, & I spent a couple of weeks sleeping in that. I now sleep mostly in my bed, but still usually resort to the chair for part of the night. I've also managed to take myself off most of the meds (Lexapro, Xanax, Oxycontin, & Oxycodone).

I've currently finished my 3rd round of chemo, each round being once a week for 3 weeks with 1 week off. I'm actually getting 2 weeks off this time to better coordinate with my DH's work schedule. By doing this, he'll be able to take me to 2 of the 3 appointments. For the other one, I have to have one of my 2 kids, my SIL, or a friend take me. I can drive to the appointment, but not home, due to the pre-meds.

I'm told I'll have at least 3 more rounds yet. I'm also told the "cure" word will not be used. The goal is to put me into remission. I just hope I stay there! This tnbc stuff is pretty aggressive, & the future is very uncertain. I'm just trying to stay positive, live NOW, & hope that if it ever does come back, a cure will have been found by then.

I do have cancer in my family, too. My Dad passed away from prostrate cancer at age 59. His brother passed away from it at 54. Their mother had ovarian cancer & died at 31. Her sister had breast cancer & a mastectomy, but I don't know any other details, other than she did at 69, I think, from Parkinson's Disease. I'm 51. I haven't done the genetic testing because the oncologist tells me it's likely only to serve to scare my daughter.

I have a lot of questions about my past treatment, like: why wasn't a mastectomy discussed since my cancer was so aggressive? Why were only breast exams done when it's known that this type of cancer typically comes back elsewhere? Why was I put into a radiation study to check the results of localized radiation to the lump area only, being told that that's where a recurrence typically happens, when that isn't the case for tnbc? I know nothing can be done now, but if these were mistakes made by the professionals involved, it would at least be nice to know that they no longer do this!

When I'm considered in remission, I'll have other questions to ask, like about having a complete hysterectomy to eliminate (to the best of anyone's ability) the chance of uterine, cervical, or ovarian cancer. I have painful scar tissue & a fat necrosis in my breast where the original lumpectomy was done. I'm wondering if I could have this removed & the other breast reduced to match. (The radiation caused a lot of shrinkage, so there's already a marked difference from side to side. Removing more tissue would make bra buying impossible!)

I post pretty regular blogs on my treatment, thoughts, & such on my SparkPage. You can read more there, or just follow my story from here. I also have a personal website (see my signature line) with lots of information about me & my family. You need to be using Internet Explorer to view it, though. (Firefox & Google Chrome won't work.)

I am curious as to whether there is anyone else here with a recurrence of tnbc, especially if you've never had a mastectomy, nor chemo. I'm told I'm unique, so finding someone "like me" would be nice, though at the same time, I certainly don't wish this on anyone else! This isn't a matter of "misery loves company", but that I'm looking for success stories for people like me!

Donna (Upstate NY)

"Even monkeys fall out of trees."

"Suffering is the tuition one pays for a character degree."

"Accept your diagnosis, but never your prognosis."

home.roadrunner.com/~andydonna


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