Calling all TNs
Comments
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TifJ, you are correct. the testing facility is in Utah- Salt Lake city. I had mine back in 3 weeks. Hang in there Cocker!!
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I had mine back in about 10 days. I was told it could be a month. I just happened to be having chemo and mentioned to the nusre that I was waiting for results (my appt. with the genetic Dr. wasn't for another 2 weeks). She called the dr. and the results were in so he came and told me while I was "in the chair". So, I think they can get them earlier sometimes, but wait until your appointment with the genetic Dr. to find out! Mine was BRCA1 neg. and BRCA 2 variant of unknown significance.
I am taking my daughter (6) to a birthday party in the park today. The invitation says from 12pm to 5pm!! Is that Mom crazy?? 5 hours with a bunch of little girls running around a park??!! We won't be staying that long!! HA!!
Happy Saturday everyone!!
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Thank you, all. I will stick to this site. I am having anxiety attacks now because of this. Barely functioning from the nerves. Had anyone had the infiltration into the lymph channels? Any help appreciated.
I am a working clown. Have been for 24 years. Very physical job. I'm working today. 2 gigs and wondering how I'm going to keep the funny, upbeat going. I have to close my business because of this now. I do have a dear husband but this is going to hit me hard financially too. I'm just so stressed I don't know what to do.
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Just a clarification of brca 1 and 2. Both are linked to higher rates of breast and ovarian cancer. I think most TNs who have the gene tend to be brca 1, but I turned out to be brca2. I can't find my results at the moment, but I was told I have an 85% lifetime risk of breast cancer (and that goes for both breasts individually, which is why they both went), a 35% risk of ovarian cancer, something like a 5-10% risk of pancreatic cancer, and slightly higher than a 1% risk of melanoma (also slightly higher than the average person). There's also a higher risk of colon cancer, so I'm slated for a colonoscopy later this year. Oh joy.
My great aunt died of breast cancer in her 50s, and my great-grandmother died of ovarian cancer, so the test results weren't much of a surprise. Interesting that you only need 1 of those criteria to be tested. What I think is frustrating is the rules for people who haven't been dx'd. My sister got the test, but I don't remember if it was covered or not (she's positive, unfortunately). However, insurance wouldn't cover either of my parents - we wanted to find out for sure which side it came from (we're assuming my Dad's because of the above history, and his side is Ashkenazi Jewish) so we could offer advice to cousins and other family.
Kathy - Good luck with your test. Generally they do it after the diagnosis. In my case, my doctor didn't want to go ahead with any surgery plans until we knew, because it can mean the difference between a lumpectomy, mx and bmx.
Clowngirl - Welcome. You've gotten great advice already from the women here. Ask questions, educate yourself, and then just push on with your life the way you always have. There are also great threads on here for surgery, chemo and rads (by month of treatment), so you'll find wonderful support and companions for everything you have to face.
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Wren: Your sig line says DCIS - I can't recall another TN on here who is DCIS, but I could be wrong. Also, I'm not aware of chemo being recommended for DCIS (as it's non-invasive) but I could be wrong there too.
Titan: good luck with the mammo, I'm sure all will be well - we just have to keep reminding ourselves of that.
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DCIS was listed on my path report a long with lots of other things. Only thing they focused on was the triple negative with lymphvascualar invasion. So who knows! I never got the brac test I assume because no on had BC except my aunt who was in her 80's when she got it. So I was a bit baffled that I had TN, but I guess all those statistics are guidelines and anyone can get it! There was never a discussion of what kind of surgery I was getting either, it was a lumpectomy and that was that. I never met with a MO till a month after my surgery either, so I guess every one is different.
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Clowngirl- I have lymph and vascular invasion as well. My pathology report from my biopsy says that it's "extensive". I understand your level of anxiety. 99% of the time, all I can think about is that I have cancer. Don't hesitate to talk to your onc about your anxiety. They can prescribe something that can help. I'm taking something for anxiety as well as depression. Getting this diagnosis is the biggest curve ball I've ever been thrown. I've done 2 rounds of A/C and my 3rd is on Wednesday. I'm doing A/Cx4 and Taxoterex4. Then BMX in September, and most likely radiation after that. Why do you have to close your business? Some people are able to work through treatment. I'm 6 weeks in, and have only missed 2 days for the chemo infusions, 2 half days for illness, and a few hours here and there for appointments. You might need to cut back, but don't jump to close just yet if you don't have to. Hang in there. This site is full of support and understanding. (((hugs))).
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I agree I've worked through my treatment only missing work on my treatment day.
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what is a muga scan? I don't think I ever had one of these..
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Luah, Rechk'd my Path report and you are correct as is states "Invasive ductal adenocarcinoma". DCIS is what the nurse told me when I first went to the MO after a lumpectomy.Guess I should correct my Dx profile. Thanks for noticing.
Onvacation, There was never any discussion about what kind of surgery for me either...I was in surgery 7 days after discovery of lump and was given a lumpectomy. It wasn't until I saw the MO almost 3 weeks later that I learned was TNBC.
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Yea I think my surgeon was surprised it came back TN - before the surgery he was telling me probably radiation and tamoxifin. Oh well that is why they test it I guess!
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ksmatthews--a muga scan is a test on the heart to make sure you are good for the red devil chemo.
Well tomorrow cannot come soon enough for me. We leave early morning for our Mexican vacation for a week. I booked it last June for August but if you see my signature line I was a little busy that month--HAHA. Cannot wait as this is now more than a celebration of our 25th anniversary it is a family celebration of life. Our grown kids 19 and 22 are also going--it is an all inclusive in the Riviera Maya 5* and no kids allowed. Not that I do not love them--I own a children's store for God's sake it will just be nice to not hear any crying or whining for the whole week---although my husband will be there LOL! "See" you all when I get back!
Maggie
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Have a wonderful vacation Maggie!
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Maggie, have a wonderfl time. Adult only resorts are the way to go! The screaming or crying is one problem but the parents getting sloshed at the pool bar and not watching their children at the pool drives me nutty!
And to add: The red devil chemo is Adriamycin. I had Muga scan pre and post chemo. Piece of cake kinda test.
Clowngirl: My tumor also had extensive lymphovascular invasion. 17 nodes were tested and 3 were positive for cancer. And please do not suffer with this anxiety thing.....CALL one of your doctors and get a script for some Xanax or something similar. If one doc refuses,call the next one. Starting right now, you need to be your own best advocate and let them know what how you are feeling and what you need. And if you feel you want antidepressant meds or sleeping pills, just say so. No need to go through this journey without help. Oh and few other ideas for you...start a notebook or folde ror binder. Bring it to every appointment. request a copy of all your path reports, test results and so on. Have a section that you can keep track of dates and copays. And write your questions down as they pop into your mind so you are prepared when the Doctor walks in the room.
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riley702, how did you know or they figure out you had fat deposits in your liver? Did you do a cat scan on your liver? I just had a CAT done because of elevated liver enzymes. They tested, in case I had something really bad (THAT was a very frightening wait until results came back!), or maybe 'fatty liver'. But after the tests, they just told me to lay off alcohol and lose a few pounds. But I sto;; wonder... and, oh yes, I gotta start exercising for real ;D They figured between a previous drug induced heptitis and chemo, my liver is working overtime (and, uh, I had also went to New Orleans the week before my tests...duh...and killed a few hundred brain cells on Bourbon Street...)
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Swiftbird..but at least you had fun right...do you take milk thistle? not trying to push anything but I like my wine...and recent tests of my liver has it functioning perfectly (at least for now)..despite chemo and my enjoyment of the zinfandel grape....
Again..not trying to push vitamins but since I started taking several and walking and jogging everyday my blood and cholesteral numbers have been really really good.
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clown girl and the rest of you just being diagnosed with tn bc...oh man..do i feel your pain! Here you are,,living your life and then you find this freaking lump and your world has totally changed..oh yes..I remember the horror ,,the sleepless nights..the trying to act normal when you are losing it inside...I remember it well...thinking that you are going to die tomorrow....I know the feeling..we have all been there done that..it totally sucks.......it's not fair...but..the surgery happens, the treatments happens..and yes...the treatment is over and done...and you wonder what is next..now you have to adjust to getting back to where you started from but you can't because you have changed...BUT..littlle by little you start regaining your strength again...at some point you will laugh..from the belly about something really funny and you won't catch yourself thinking..I can't laugh..I have cancer...you WILL live again...really....
oh..yeah..the fear of mets..well..that may stick with you somewhat but it is what it is...every good scan, every good report from the onc..is a victory and one to celebrate.
3 years ago when I was going through this I soo wanted to be one of the ladies that came back on here and talked to the new ladies..because I took so much from others 3 years ago.
Cancer sucks..I hate it with my entire being...but it happened to me and you...but it doesn't mean that it will take over our lives..dont even let it ..don't let it go there..
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Clowning is very physical. I am 60 now and was dragging a bit before the diagnosis. I'm just not sure I will have the strength to carry all my equipment and to handled multiple parties of 20 kids. Performing big shows for schools, daycares. I just can't imagine it right now. I think I'm in the "why me" stage. I haven't done genetics yet but need to as my sister was 59 when she passed from this stupid disease. (She was 10 years older than me).
I will keep an open mind but I'm just not sure going forward I will be able to keep up that working pace.
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Thank you, Navy Mom.
I am going to hang here for the duration. I will call and get some anxiety meds Monday. My double mastectomy hasn't been scheduled yet. I am have reconstruction and a mutual date must be made between BS and Plastic surgeon. In the mean time, I'm scared with this invasive thing growing in my breast. Granted, they removed the lump but "invasive" keeps playing in my head. The are going to do the reconstruct by using fat from my tummy. They say I am not a candidate for implants as they are recommending radiation. Is it dangerous to put fat back into the breast area? My docs say no because it's not breast tissue but doesn't cancer attack any tissue? I'm so confused. I'm almost to the point of foregoing the reconstruction altogether. I just don't know what to do.
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Titan, I actually did start on milk thistle (great minds!) and I'm certain it's getting better. They're going to re check my bloodwork next month. I admit I really did have a little too much fun in NoLa
Clowngirl, and new ladies joining these boards in last few weeks --we're all here for ya, and unfortunately know exactly how terrifying this journey is...especially in the beginning. I remember 2 years ago, exactly this time, I was in midst of my fifth round, and had to up my meds to emend and get a blood transfusion. I worked all the way through chemo, because I just didn't want to sit home and obsess about it (that's my personality). Recently someone told me they really loved a speech I made at a conference between my fifth and final round - I recall being at the event but don't actually remember anything I said in my speech as I was on major some ativan and compazine. lol You might be surprised at the strength that this brings out, physcially as well as mentally.
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Enjoy Maggie!!!!
Clowngirl, one of the best things I did for myself was ask to be put on an antidepressant. They gave me lexapro, still on it, and xanax, only take it for dr appts now, and some sleeping meds, I just take melatonin now. While your going thru treatment, onc's will most likely prescribe anything you want/need.
Ok Ladies, I have a recipe I've been meaning to post for some time and keep forgetting. This sounds absolutely disgusting and nasty, but I promise, you can't tell and you'lll love it if your a brownie fan. Got this recipe from another BC sister (HER2++) about 7 years ago. She was one of the first to have be in the trials for hercepin.
Ok, take your favorite brownie mix, I go for the least amount of sugar/fat. Then replace the eggs and oil with a can (liquid and all) of pureed/blended smooth black beans. Maybe add a tablespoon of water, bake a directed.
I know, it's sounds repulsive but I swear just try it, you won't be able to tell the differnence. My picky pain in the a** hubby loves it. Made it for my cousins last night after they made gross faces and my 50 year old cousin sat there and licked the bowl clean.
Inmate, thinking about you!
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Clowngirl - please try not to worry about getting more cancer from the transplanted tummy tissue. There is overwhelming evidence that it doesn't become cancerous. The surgery is definitely daunting - 12 hours or so. But almost without exception, everyone who has it is so very happy with the results. Come over to the DIEP 2012 discussion thread for lots of information and support. I, myself, will be having my surgery on 7/23, I had my BMX about a year ago and started with tissue expanders. Then they had to be removed for radiation, so DIEP is my next option, and what I really wanted to begin with. You'll get through this!
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Thank you, LUVRving.
I can't seem to find the Diep 2012. Do you happen to have a link there? I need to decide asap. I am scared of the length and recovery time. And still not convinced about the tissue put there isn't vulnerable to cancer. Are there any articles or studies in this regard that I can read. I am so overwhelmed. I'm only 2 weeks out from dx.
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ok ty, I was wondering what MUGA was. Seems I did have this done before tx, but they have never done another one.
I go to my Onc on tuesday this is for my 1 year, 1 month out. Any questions you ladies suggest I ask?
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Clowngirl - I could be wrong, but I don't think the tissue that is moved is at risk of becoming (breast) cancerous itself because it's not breast tissue. With an mx or bmx, there is a chance of recurrence in any existing breast tissue that they can't get (no guarantee they'll get every single cell) or in the incision, so that remains a risk even with implants.
The tissue retains its identity as stomach fat. With a DIEP, one 'risk' is that if you're prone to gaining weight in your stomach, you might wind up with bigger boobs... which could be good or bad.
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First, welcome to all the new members. The information I got from this thread when I was diagnosed was awesome!!! The tips I learned from all the other members was better than anything I got during treatment.
Luah - after my surgery my pathology reports said I had DCIS and IDC. I asked the Rad. Onc. If theses were two seperate cancers or DCIS that had invaded? She told me that they were 2 seperate cancers, but that DCIS was what she called "stupid" cancer because it stayed localized and didn't metastizes.
I asked my breast surg., the exact same question. She told me that it was DCIS that had become invasive.
Two experts.....two different answers. I still don't know which one was right, lol. I figured in the long run, it didn't make a difference to the big picture, and just gave up, but as a nurse I was pretty disgusted.0 -
Clowngirl-I understand where you are coming from with the work thing. I also have aphysical job, but not as physical as yours, but having to be happy, up, and nice all of time, it's tough while going through chemo! There are some organizations that have funds available for those going through cancer treatment, but I can not remember them, anybody else know? Most do have income limits, but there were a couple that did not have income restrictions. It was a great help to my husband and I, even though he has a good job, we needed my income also to make ends meet. Somehow it all worked out financially. I cut my hours way back, but with what you do it doesn't seem like you could cut a party short if you did not feel good. You will soon know whcih days after chemo are your good days, and maybe schedule work on those.
Luvring-did you have radiation? I have to wait also for a year after radition before I do diep.
Crazy nice weather here in Seattle! Way busier when it is nice! So much work to do outside! We finally bought a riding lawn mower, we were going to finance a nice shiny new one but decided to pay cash for an old ugly one that runs great, found it on craigslist. It ain't pretty but it gets the job done! It used to take me over 2 hours to mow, now it is done in 30 minutes!
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Kathrynn-the whole dcis thing confuses me also. I was told that my invasive probably came from my dcis. I was also told by one of my docs or nusrses, forget who but know it was not my mo that chemo would not get rid of dcis but I did neoadjuvent chemo and had no dcis or idc found when i had the bmx. SOme people have extensive dcis with no invasion and some have tiny invasive tumors without any dcis, so that makes me think that they are 2 separate cancers.
Oh, wish me luck! I am starting aromasin tomorrow. Hope I don't get bad se's. If I do I will quit taking it because with only 3% er positive I don't think it would be worth bad side effects.
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I am triple negative and IBC. I was diagnosed with a right inflammatory breast cancer 8/2007, (it was infiltrating ductal carcinoma; grade III, ER/PR, HER2/neu negative, positive axillary lymph node). I also had a lump of 1.5 cm contralateral tumor was T1 N1. I received neoadjuvant chemo with Taxol for 12 weeks and fluorouracil, etoposide, and cisplatin for 4 weeks. I had a double mastectomy 3/24/2008. After the surgery, I received 6 weeks of radiation once a day. I completed treatment June 2008.
I am five years out my dx and doing well.
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Good luck on the aromasin, Bak. Seems some do just fine on it, you could ,too!!!
The DCIS and IDC topic is interesting. Made me go back and re-read my path reports-AGAIN! And there it was, sure enough there was a part of my tumor that had DCIS. I was shocked to see it.
Terry, Thanks for posting. Always encouraging to read posts like yours.
I have bumped up my Metformin to 425mg twice a day. Tolerating it just fine, so far.
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