Calling all TNs
Comments
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TifJ - In response to your post - I also tested under BRCA2 Sequencing - "Genetic Variant of Uncertain significance IVS12-3T>A", which my doc told me to treat as negative. Th\ey said that in most cases, the lab will come back and say that it is negative, eventually. I am TN, also had DCIS and IDC in the same left breast. My test did not say anything about how many people had this same variant. I have no family history of cancer on my mother's side. On my father's side, we just very recently learned that my first cousin (father's brothers daughter) died of pancreative cancer at age 62. Another first cousin (father's sister's daughter) had BC at age 58 (DCIS). So only two first cousins in my family, both diagnosed after age 50, which is a good sign that this may not be genetic. At first Blueshield denied to pay for my test, we had to appeal twice, once we learned of the second cousin's cancer. My genetic counselor said that the lab will eventually get back to me once they analyze the gene further, it may take 3 months or 3 years, but I will get to know for sure one day. It was very disappointing to get such a result. The genetic counselor and the doctors did not want me to change my treatment based on this result, like I said before, they are almost certain it is probably a negative result. They also told me that most of the people in their database for genetic test is based on a European population. I am East Indian, so they are saying that many ethnic groups like mine, are not in the database, so they are unable to identify certain genes which may be present in the genes of my people. Is your result the same as mine (IVS 12-3T>A)? It is good to compare, just in case.......we would be on to something.
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OMG..I just love hearing about everyone's travel plans! I wish I could join you all..or at least go somewhere...my DD's wedding is taking a BIG BITE out of any travel plans for us...Weddings are expensive..I'm glad I have just one daughter!
I like how we are celebrating chemo's end or cancerversarys..or whatever..we need to...! any reason to party right???? We do deserve it!
I told you guys about how my co-worker asked how I liked having hair now..geesh...
Haven't even asked my onc about the Brac tests...haven't got my final path report either..I always have all these questions when I see the onc and then once I'm there...I just want to get it over and leave and forget everything..
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I had to cancel a trip to France and my usual week in KY with my horses when I was diagnosed. I could have done both, but I figured I wouldn't enjoy them, so why go. Truth is, I travel *somewhere* each year, but Maine was an entire month, and that made it really special.
I'm hoping to get to Prague, Budapest and Vienna this fall, as well as a week in NC driving at a preserve near Blowing Rock.
My *real* interest is the Galapagos Islands. I am just waiting for someone to go with, probably my SIL after next year (after her son/my nephew gets married).
Annual travel has, in fact, become my Bucket List. Anywhere will do!
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Minxie - I love love love Rome! That is where I will likely spend most of my hopefully two months in Italy. I have spent a total of about 10 days there to date and have only seen a fraction of what there is to see. It is an amazing city and one that, I think, you have to settle into and take your time to really appreciate and enjoy. I hear so many people say they hate rome after spending 2 days there trying to cram in all the sights. I would hate it too under those circumstances. I expect you to follow though on this gift to yourself!!
Titan - wedding are ridiculous in terms of the expense. Not to discount the specialness of the day, but it seems they have gotten out of control. I am sure your daughter's wedding costs a lot more than a vacation! It will be worth it though.
As for your coworker, LOL. I am sure she was just looking for something to say. These types of things are what happens when people don't know how to talk about cancer. This is exactly why I have told only a handful of people about it and have sworn them to secrecy. I would find it difficult to be gracious in the face of comments like that, even though I don't think they are meant to be as bad as they sound.
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Heidi:
So glad the surgery is now behind you. Heal well, dear Heidi and take care of yourself.
Fighter: No on the BRCA testing. I was 62 at diagnose and no family history of any cancer, so I was denied. Both my daughters would be eligible for it as now that there mother has it - the chain has begun. They both refuse to do it as they do not want to know unless they of course come down with it, then they would have it done to aid in treatment. I'm tired of fighting with them over it, so I gave up pushing them to do it.
Jenn: steadfast prayers that this will be nothing but a huge mass of disgusting anxiety, horrid tests and then a wonderful "not cancer" outcome. I don't think I will ever look at a noodle again in the same light! Stay strong, sister, stay strong. We are all here for you.
Linda
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Heidi - I am the same way about travel. I just love it. When my grandmother died several years ago I promised myself to try to see the world now, rather than wait until retirement. My grandparents all worked so hard their entire lives with the expectation that they would do everything they wanted to do when retired, but by the time they got there, illness and old age kept them at home the entire time. Ever since I have tried to live by the philosophy of planning for the future, but enjoying the present too. BC has re-emphasized that for me.
I have heard the galapogos (sp?) island are beautiful. That would be an extraordinary trip. So many places, so little time and not enough money! Damn it!
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Heidi, That sounds like a real pain, but I know you have the spirit and determination to do all the exercises and get your new knee working. I wish I could have seen your horses seeing you.
Fighter, I did genetic testing, because I have two daughters. The BRCA tests were negative, but my Onc said that doesn't mean there isn't a genetic link we don't know about or understand yet.
LauraJane, I cannot believe that man said that to you! Have a good time in N.Y.
Jenn, I'm sending positive thoughts your way.
I'm still achy and tired and find I need about 10 hours sleep at night. I'm doing my old exercise routines of walking and riding but I hurt all over afterwards. It seems so strange to be finished with treatment, but its obviously not finished with me. Today one big toe nail fell off (I finished chemo in October.)
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I have a huge weakness for travel - it was practically bred into me. When I was 7, my family took a 10,000 mile road trip around North America - in 30 days! 3 kids in the back seat, and no minivan or dvd player! Husband and I have tried to do annual travel with our kids too. When I was diagnosed, I told my husband that if I got through this, we were going to take my dream trip - to Galapagos Islands. No more waiting, just do it. I'm happy to say we depart March 31, just in time to celebrate our 30th anniversary. This is how I get past cancer!
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I had to give up a trip to Vegas - first class tickets, great hotel, reservations at Joel Robuchon's - due to my diagnosis. So now I have seeral trips planned - after treatment ends, our family is going on a Disney Cruise, all the bells and whistles. My 3- year celebration is a Super Bowl trip (on my bucket list), and five years is London, Scotland and Ireland. I will be damned if I don't make those trips, regardless!
Laurajane - how long are you going to be in NY? I'm going Monday-Sunday. We are staying in midtown, I think the W? I love the city, it is so easy to let my worries go when I'm there. I hope it is the same for you! And what a jackass!
Mitymuffin - I'm dreading the long "recovery" time that we just don't deserve. I hope it gets easier for you soon.
The cording in my arm is getting worse, the pain goes down to my wrist now, and I have some swelling in the tissue of my armpit. I'll be calling an LE PT tomorrow, along with my surgeon. I have my anesthesia pre-op and PS consult in Boston tomorrow. Fun!
Hope everyone has a great evening!0 -
Mitti - I can't believe you lost a toenail this late?! That scares me.
Luah - I am jealous! That is right around the corner. I am leaving for vacation the same day myself, but nothing like your trip (annual girls trip with some college friends . . . Sedona spa trip this year). Have a terrific time!
Suze - London, Scotland and Ireland sounds heavenly. Scotland is near the top of my to do list. I have a good friend who lives in London so I have been able to visit there a few times. I love it. I spent some time in Ireland about two years ago . . . it was so wonderful!
I love hearing about everyone's trips, planned or just dreamed about. This is much better than talking about cancer.
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My toenails are still trashed and I finished chemo last July! The big toe nails fell off and are only about half grown back. They're also kinda 'flaky' and prone to crumbling. When I saw my MO earlier this month, I showed them to him and asked if I had a secondary fungal infection, or if this was still 'chemo crud', as I put it. He laughed and said they looked pretty good to him and said they would improve with time and reminded me that toenails grow more slowly than fingernails due to the stimulation fingernails get from our near-constant use of our fingers.
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It is fun to hear about everyone's travel plans. I dreamed about traveling during the last 9 months, when I couldn't go anywhere because of chemo and radiation. I think the Galapagos sound great.
Also have always wanted to go to Scotland. I hope all of you who are traveling will share your experiences with us.Suze: I can sympathize with you, waiting after chemo for your surgery. Then getting the path report so you can see how the chemo worked. Hope your surgery goes well and your report shows all clear.
Jenn: I am sorry you have to go through a biopsy and all those tests. Stay strong, I am sending positive thoughts and prayers that you get a good result and outcome soon.
For those of you discussing the BRCA test, I have the BRCA 1 "Variant of unknown Significance". I am meeting with a genetic doctor next week to discuss it. It is very confusing to me.
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Hi, girls!
I'm loving this thread - such GIRL POWER vibe!
=]
I'm 35, diagnosed at age 32,
I had found a huge lump in my breast in early july - it grew before my very eyes.
I had an appointmet scheduled the very next day, my exams showed a large 4.0 cm cystic image. My hormones were a real mess, back then, I took some medication to balance them out. I've always been afraid of BC - as a nice ashkenazi jewish girl, I had a strong family history of BC: seven people in three generations of my mother's family had BC. Two more people on my father's side had the same.
I came back in 40 days, so, by mid-august, it's size had decreased to 2.4 cm - but it was still, a typical cystic image.
That's when it's growth pattern completely changed: by early october, I had I 6.8 solid lump in my breast. My mammogram showed a nodule, but not a trace of microcalcification.
Late august, my biopsy came out and I had an extremely aggressive ductal invasive triple-neg.
I underwent chemo, radical mastectomy, radiation, what have you.
It's been over two years, now.
I'm soooo glad I made it!
=]
My onc wants me to get genetic screening so that I'll have my contralateral breast removed - as well as ovaries.
I'm down in Brazil, so, no refunds, no whatever. I'll have to pay out of my pocket. Does anyone know a good lab where I could get a screening?
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deiag:
This is where my Genetic Counselor sent my specimen to: http://www.myriad.com . I have heard that the BRCA testings cost approx. $3,3,54 and has to be ordered by a healthcare professional. Hope you can make this work and get your testing done.
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Lovelyface- My genetic dr. told me the same thing- the lab will continue testing the variant and if it ever shows up as being related to BC they will notify the doctor. He has not had one come back positive since BRCA testing began. My variant is R2784W(8578C>T). It is scary not knowing as I have a daughter she is only 5. I am choosing to think it will never come back positive!!
Lynn- the whole "variant of unknown significance" is very confusing. It basically says they don't know and may never know if your particular variant will ever be positive for BC. Since most TNs (not all) that test positive for BRCA are BRCA1, I would ask to be tested again since that is where your variant showed up.
deiag- from what I understand the Myriad lab that Lovelyface mentioned is the only lab in the US that does the testing- Canada uses them as well. I don't know about South America. I wish you well!
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@Titan, yes wedding are expensive. Never had one, but after all of this I just may. LOL I usually have so much to say before I get to the Dr., and when I finally there I just freeze, but this time I had to talk. I needed answers and direction.
Lovelyface- hope all is well. And yes for ins. to cover it has to be justified and ordered at least in my case.
LJ-please enjoy. I plan on letting it all hang out this summer.
Welcome Deiag and hello Mariposa!!!!
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Deiag: Welcome ! Are you Brazilian? I am . I am from Rio but I live in California. I will ask my friends about the test in Brazil and try to find out who does it.
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It figures that the weather would be awesome in the days following my knee surgery....
Heidi (extremely grumpy and gaining way too much weight lying around)
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Heidi: Sorry your leg is so swollen and painful but knowing you, you will be up and about in no time! Wishing you a speedy recovery.
Laurajane: I can't believe someone actually said something like that to you! I would have given him some painful reply ad thrown my drink in his face. It's appalling how insensitive people can be! You are going to have an amazing time in New York--You will light up the whole city with your presence!!! Have a great time and come back here to tell us all about it. Me, I have been suddenly very busy so I haven't had much time to post or catch up.
I love to travel and I highly recommend going for it! We try and plan a trip once a year to somewhere new and it's so rewarding--even if its local!
I hope everyone has a lovely day! It's gorgeous here in California after the rain!!!
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LJ -whatcha doin in NYC? All fun stuff, I hope. Our local Parks & Rec has day trips there that are so cheap it doesn't make sense for us to drive ourselves. We're going to do a few this Spring. I grew up in NY, but I had to live elsewhere before going back to see the S of L and Ellis Island! Extremely weird....0
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Heidi:
Hope you are doing well and you really need to cut yourself some slack. I'm sure you are NOT gaining weight since the surgery, but even if you did - you'll lose it walking all around DC.
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Laurajane - A pretty stupid thing for that man to say that to you. My God, some people are so weird. I would have said something just as mean to him.
Heidi - I don't believe you can put on weight that quickly, it is just in your mind, because you seem to be a very active, nature loving person and are missing all the action right now. Time flies and you will recover very soon.
MBJ - It is still raining here in the Bay Area. Glad to hear that you have better weather there in S. California. It was storming here an hour back, right now the sun is coming through, although very very wet.
I had my second Rad. this morning. Right now, it doesn't seem like a big deal, very easy. Will it continue to feel this way? I wonder.
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Lovelyface - Rads were really easy for me. The only SE for me tiredness - more towards the end. As long as your skin holds up and you don't get any blisters you should do great. Make sure you use the creams they tell you and often.
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Lovelyface - as Swanny said, it's really important to use your cream. In Canada, they recommend we use Glaxol Base cream. It's really good and I never had any blisters at all.
Heidi - I'm sure you are experiencing water retention and not weight gain at this point. Hang in there....
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Sugar- yes, I'm thinking the same thing at this point... whew!0
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Lovely - I am doing my last rad tomorrow. It has been very easy. The treatments themselves are nothing. I did start to burn during the last week. Be sure to use lots and lots of aloe, cream, or whatever else you are using. I unfortunately developed some blistering and nasty skin break down on my very last whole breast radiation -- thanks to my skin for not hanging in there for that one last time - lol. But even that has not been bad. It does not hurt. It is just gross and I have to keep burn medicine on it now. The rad onco said it should be healed within a week.
I am sure you will do fine. The worst part of it is the daily grind of it. But like chemo it will be over before you know it.
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Heidi..you are a freaking stick! I'm sure you are not gaining any weight..but even if you are you will lose it by riding your horse or falling off of them...Make that DH of yours wait on you hand and foot...
For those of you going through rads..I think most people handle it very well..there are some that have some se's but for the most part..it isn't bad at all...I thought it was so much better than chemo...quicker, no needles...just get zapped and leave..I liked that..
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Hello triple neggies - Anyone else in the middle of chemo trying to work out? It is soooo exhausting - particularly scampering from locker room to restroom and back trying to get your headgear changed out. I don't know why I feel like my baldness is something i have to be ashamed of - as though it's my fault I have cancer and must undergo treatment that causes hair loss. But I do...
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Erica - I tried to but gave up. I made it through the first 3 days after my first infusion, then the exhaustion hit. I tried to work out the day after the exhaustion day and nearly passed out. After that I just gave up and decided I would get back to working out after chemo. I hear it helps with side effects. I just did not have the energy. I was also working full-time, so my usual lack of time was a factor as well.
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And I am with you on the baldness. To this day, only my mother has seen me without hair. Thank God for great wigs.
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