Calling all TNs
Comments
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LP Boston - normally here in Canada if your cancer is invasive they will do baseline scans prior to the start of treatment. No other scans are done in the future unless you have symptoms which to me is crazy because if you can catch something when it is smaller, doesnt it make more sense to treat it before it gets a chance to do something crazy! Its all about the almighty dollar no matter which way you look at it!
I called the genetics clinic at Credit
Valley Hospital to update them that I have been diagnosed with a new
Primary bc. They had said back in November 2013 when I went for
genetics counselling and my older sister went for the results of her
testing that I was not eligible due to their criteria. Three immediate
family members having bc and not been tested. As there was only myself
and an aunt left to be tested they said I had to wait until another
family member was diagnosed. These rules are absolutely crazy given my
strong family history. Anyways....they now say that I can get the
testing due to this new breast cancer diagnosis. She still said that
the chances of me having the mutation were slim as my other two sisters
didnt have it. I, however, belong to two separate private Facebook
groups...one is for DIEP flap and the other one is prophylactic masectomies, I posed the question on there asking if others have had
immediate family members test negative and then some come back
positive. Bingo....several said they had a few sisters test negative, a
brother positive and then themselves positive....so I know now that the
genetist is not entirely correct in her thinking.I told her I
wanted the test done, she is writing up the requisition and I will head
down to the hospital to get bloodwork done at my convenience, no appt
necessary. It will take 2 months from test date to get results back.I
always found out that Triple Negative breast cancer is often associated
with having the BRCA1 gene. I mentioned this to her and she said
usually only in women under 40. I dont think I am "the usual case
scenario". The chances of being diagnosed with bc under age 45 is 25% -
I got it, chances of being diagnosed with Triple Negative Breast Cancer
are 15-20% - I got it. Its especially strange since my first breast
cancer was estrogen positive. I dont think breast cancer has any rhyme
or reason or plays by the "normal rules".Michele
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inspire - the chocolate I buy is called "Green and Black's" - it is fair trade organic and tastes very good. Unfortunately we don't have Trader Joes here in Vancouver, but Whole Foods is where I do the majority of my grocery shopping and the Farmer's Market which sells all locally grown produce, but of course at this time of the year we are limited to the hearty veggies like kale, carrots, beets, squashes etc. I am not a big fan of depriving myself from eating food that brings me pleasure, and I am fortunate that most of what I like happens to be not too too bad for me - I guess my worst loves are the coffee, wine and chocolate. Now you have inspired me to try and eat only steamed veggies for a meal - I think I would get hungry with no carbs. I do eat meat once a week and I eat fish about twice a week, but mostly I prefer vegetarian meals.
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Inspired my wife has 85% dark chocolate. It's Lindt brand which is a pretty readily available brand. We got it right at the local supermarket (Publix). I don't however, think it's organic.
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Regarding the concern of scans - I know a lot of TNBC ladies on the forums throughout bc.org who don't have scans. I believe the medical teams for each of us use our own variables to determine how they want to evaluate and monitor us - variables can really change this from what we look like at a glace to one another, to where someone might have an additional risk, such as where someone might be dx'd at age 25 - their team might feel theirs might act particularly aggressively or if there was suspicious nodes or family history, etc - and therefore they might have a scan. Node involvement, location of tumor, labs, medical history, final pathology report, was ther evidence of lymphatic invasion, and so many other things can influence the decision a doctor makes to request or not request a scan. The NCCN guidelines is a good reference point in the U.S. to see what is recommended. Even the reporting the diagnosis option here at bc.org leaves a lot to be interpreted. For instance, the selection of the option for tumor size. It publicly displays at 1cm on a profile, but in the drop down criteria box for selecting it, the range is actually 1.0cm to 1.9cm. That's a big variable. So many of us might look the same with a 1cm option selected, but in reality, some of us might be at 1.9 and some at 1.0 - but we don't see that specific difference listed because the option defaults to 1.0 when you select it - and this range represents almost a complete doubling in size. I just don't want anyone to have to worry if they didn't get a scan - your medical team must be confident with all the information they have regarding your particular case. Remember, they want all the facts on you - and if they felt a reason to not do a scan I'm sure they were following the information and if the information led them to not request a scan. However, if you do find yourself worrying then I do think it is very reasonable to discuss this with your team and request a scan.
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Regarding Dark Chocolate - Thank you dark chocolate aficionados, and Adagio and AlHusband! I researched all suggestions and found the highest organic one to be the one Adagio mentioned "Green and Black" at 85%. It says my local WalMart has it in stock! I'm going there today to purchase it! Yippee - can't wait. LOL
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One result of my wife trying to follow a low glycemic diet is that I've lost about 23 pounds following it with her! Now, mind you, losing 23 pounds from my rotund, porky physique is like tossing a deck chair off of the Titanic...but...you gotta start somewhere!
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We found Black Angus has $8.50 lunch specials Monday through Saturday, and salmon is on the menu - and it's wild caught too! When we go there they will poach the salmon for me, so no oil or butter. I sometimes get it with the salad and baked brussel sprouts. I do always have on hand the wild caught sockeye salmon from Whole Foods. It is $10 for a pack of 2 and each is a great sized portion!
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OK here's a weird one. My wife had a tiny spot under her nose which the Oncologist suspected was a squamous cell or basal cell carcinoma. He refers her to a Dermatologist. Dermatologist takes a biopsy. She gets a call week or so later while at Chemo for her BC. It's the Dermatologist's office calling with the lab results. The biopsy came back positive for squamous cell carcinoma in situ. Dermatologist says he wants to surgically remove it. However, PS is doing mastectomy and reconstruction anyway, so he suggests that he just take it off while she's under for her exchange surgery. He takes it off last Friday when he does her exchange surgery. He sends what he removed to the same pathology lab as the biopsy. It comes back negative for cancer. Huh? It was cancer and then it wasn't? Only thing I can think of is the chemo for the BC killed that too? But if that were the case...why was the spot still there? So, Ive decided that I'm going to think positive and apply the pathology report for the skin cancer to the BC. Whatta ya say we just call it a day and say THERE'S NO CANCER OF ANY KIND ANYWHERE? That's it...I've declared it...for everyone in this forum...last one out shut off the lights!
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That sounds like a great idea AlHusband! Your wife is very lucky to have you by her side through all of this cr__! I had 28/33 rad today - last of my full rads - only 5 boosts left - or as my RO says the "bonus rounds". I had a small meltdown this morning. I've worked through all of my treatments and I think I've been pretty strong. My underarm is so sore from rads & I haven't been sleeping good. Everyone was so nice though - they gave me a few things to try & I realize I need to keep taking ibuprofen and pain meds regularly to get through the rest of rads - thought I should just tough it out! I stayed home from work today and just rested. I have my work Xmas party tomorrow night & I'm hoping to go and have a few beers and relax! Thinking of all my fellow BC warriors, especially us TN survivors! TGIF
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Curlylocks - here in New Zealand apart from at the commencement of treatment we only get further scans if there are symptoms that last 10 days. When I asked my BS about this he said it is easier to treat a larger cancer than it is a smaller one. Go figure.
I also did genetic testing because my mother had ovarian cancer and my grandmother (mum's mum) had left breast cancer the same as me. My results came back as inconclusive!!. MY BS said request that it be done again but I'm not sure I want the anxiety of waiting for results. Will have to think more on that one.
In relation to chocolate I have never been a big chocolate, biscuit or cake eater and I still got cancer. Now I eat it if I feel like it and enjoy it. lol
AL Husband that is a very odd scenario with your wife's spot. I can only think that perhaps they didn't take enough at biopsy to get a true result. I would request that they retest the whole specimen (you have the right to request this) and then you will get true results. I am so glad it's gone though because we all know what SCC's can do.
Linda you paid your beloved daughter the greatest compliment by continuing the special care of her beloved wee girl. I'm sure Bryanna also comes to you (apart from money which they all seem to come home for or decent food) but also to fill her heart of her much loved gran to sustain her through her studies. I know you think of your daughter every day ,as I would if it were one of mine, and I know your empty arms ache for her but she has left you with the greatest gift she had to give, Bryanna. I hope one day you can post a picture of this gorgeous young lady. You are awesome and always in my heart.
Have a good day ladies.
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annie---supercalifragilisticexpialodocious...know I did not spell that right but in other words...woot woot
Mags
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Hi Curlylocks, (ps love the name for once again my hair is coming in as chemo curls)
I had asked about taking the brac test back when I found out I had cancer again. They said it is just in my makeup because no one in my family has ever had it. I am the youngest of 2 sisters and a brother. When I was told I had the Triple Negative I had asked about it again and they finally agreed and my insurance paid for it. I came back negative for the brac gene. Yeh! but it concerns me that they say African Americans, under 40, are premenopausal and those tested positive for the Brac Gene are most likely to get Triple Negative. I am none of those. Reading everything on this board I don't see that most of us fall in that category. Very strange. And yes I had estrogen positive back in 2005. Like you said cancer has no rhyme or reason.
I wish you the best and very much enjoy talking to you and everyone on this board. Everyone is knowledgeable and I am learning so much.
Thank you,
LPBoston
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Annie...wahoo on the lymphatic whatevers! no cancer...goodstuff
And...ALhusband...I think I like you....!
Kathy..good to hear from you girl.....
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Hi All,
I'm about 11 days out now from my last infusion of AC. I stopped taking all the antinausea meds two days ago. I am astounded at how much better I feel! This AC had really wiped me out. I was a very active person before I started chemo six months ago. The week before I was diagosed, I had ridden over 150 miles on my bicycle and gone backpacking for three days. Yesterday, I was able to work out on the elliptical for 15 minutes (three five minute sessions). I kept the sessions short because my heartrate kept going up so high, but it felt WONDERFUL to be able to just move again. I have my surgery 20 days from now. I want to get myself in as good as possible physical shape as I can between now and then. I know I need to not overdo it, but I also know that the better my health is going into the OR, the better my recovery will be.
How do you like my latest selfie? I just took it this morning. Because I had Taxol first and didn't lose my hair with it, I made it almost all the way through chemo with hair. I even made it half way through AC with some hair, but AC did it's thing on me and two weeks ago, a dear friend shaved what little was left. The eyelashes and brows left about the same time. I think the loss of eyebrow is what really makes it look strange. I shock myself when I pass by a mirror. I'm guessing pretty much all of us here have had that experience. I may look like an alien, but I'm feeling so much more like a human!
Adagio and Inspired: Thanks for all the talk about dark chocolate. I've never been a huge dark chocolate eater, but a friend of mine with MS that really watches what she eats gave me super heathly recipe for Chocolate Ganache. It's made it with all organic ingredients and healthy fats (coconut oil, MCT oil) and agave and maple syrup for the sweeteners. It's really good. Here's a link to her blog with the recipe: chocolate ganache The one thing I do differently than her recipe is that I mix the ganache with a mixer instead of a blender as she states. The chocolate kept seizing when I did it in my Vitamix. I keep little squares of it in the freezer and have one at night after dinner. I didn't eat any while I was on AC because it just didn't appeal to me. Now that AC is done, your talk of chocolate has reminded me it's in the freezer! I think I'll have a bite tonight.
ALhusband: Nat's thing about the skin cancer makes me think of what as happened to my skin with chemo. I'm of Irish descent and have lots of sun damage. I had 12 rounds of Taxol first. Immediately after my first round and for every round after that, more and more of my sunspots would scab up and then disappear! I jokingly said the chemo was eating my freckles! Around the 10th round or so, I suddenly got this big bump on my back that looked like a wart or something. It hurt and itched. My MO wasn't worried about it, but set up a consulation with the dermatologist for me about it to have it removed. The dermo appointment isn't until March. Anyway, next I started AC. The AC didn't eat my freckles the way Taxol did, but it did a number on whatever it was on my back. After the second infusion of AC, the darn thing dried up and fell off! I said "what Taxol giveth, AC taketh way!" Nice! I'm convinced that chemo has gotten rid of all kinds of potential areas of future skin cancers on my sun damaged skin. If it did all that, no telling what other good stuff it did inside me.
About scans: I don't think I'll be getting scans either after treatment. At this point, I'm okay with that. I may feel differently if I'm having what I think are symptoms, but I know that I tend to stress out waiting for test results after being diagnosed. I really personally like and trust each of my doctors at Vanderbilt. That's why I go there. I figure they are highly trained specialists and they have my best interests at heart.
On the BRCA testing: My insurance pays for BRCA testing for anyone diagnosed with TNBC provided they are 60 years old or less at the time of diagnosis. I was exactly 60 years old and just made the cut off. My paternal grandmother died of BC so I did wonder if I had the mutation. I did get tested, and I did not. The genetic counsellor told me that apparently Medicare pays for BRCA testing in the US. I haven't researched it and don't know the details. Hopefully, as the cost of testing comes down, this will be much less of an issue.
For everyone in dealing with bitter cold weather (including me), let's try to find ways to have fun staying warm ....spring can't be far behind!
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ALHusband,
I had a bunch of pre- cancerous bumps (they looked like freckles but if you touched them you could feel the bumps. They were the result of getting sun poisoning when I was a teenager and I'd been putting off having them removed. They all disappeared toward the end of my chemo for BC. Some silver linings to the cloud we live in during what was for me a really crappy experience during chemo.
Peggy
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My onc or bc does not suggest scans. I was told that with evidence there is no better chance of survival by doing scans when there is no symptoms or signs. The scans cause unwanted radiation and stress that you don't need. I am ok with not doing them, I just make sure I stay in tune with what's going on. If I have a pain I monitor it. I was told anything over 2 weeks needs to be checked. So far so good! I will be 3 years out in March.
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I just wanted to ask you all to pray for a friend of mine. Her mother, sister and her all 3 have Breast Cancer and all are undergoing treatments, surgeries and etc. It's bad enough for one person to have it but 3 in the family at the same time, has to be hard.
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ksmatthews - my oncologist told me exactly the same about scans and pain. I am also glad not to be having ongoing tests because I would personally find it quite stressful. Congrats on being clear for 3 whole years - that is wonderful!
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Never had a scan..will be 5 years out in March...I asked about one earlier and my onc told me same thing...why put yourself through the stress....
Simple...no way are you 60...really?
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Annie: Not sure I did this correctly, as I've never posted a picture before. But here is Bryanna with my other daughter, Jennifer, that lives in MInnesota. Jen is my first born, Tiffany, Bryanna's mom was my second bundle of love. Be well, Annie. Think of you all the time! Love, L.
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Linda..your girl's are beautiful...like YOU! inside and out
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SimpleLife: I'm going to need to see your ID! If this is what 60 looks like, then it is the new 30!
Update on the dark chocolate - thank you for the recipe SimpleLife - I will make it next weekend and I love the idea of putting it in the freezer and breaking off a square.
I found the Black and Green (or is it Green and Black) Organic Dark Chocolate at WalMart last night. It is $2.12 a big bar. I was most pleased! They also had one that has mint in it, but a little less cocoa - like a Junior Mint, so we got it... and sampled that last night. It was awesome - not overpowering and not too sweet either. I'm coloring my hair now. Blonde is easy to do and blends the gray, just use something with a good rating from the EWG site if you can.
AlHusband - such great news about your wife. I bet the chemo did zap it. Wow - that has got to be a great feeling!
Oh Linda, I love the photo!
Regarding having fun staying warm. Heat a blanket in the dryer until it's hot, pull it out and run to the couch and cuddle up in it. While it is heating, make a cup of hot green tea and find one of your very favorite tv shows to watch ... or get a game of scrabble ready.
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I am not active and I am having a difficult time trying to get active during chemo. The first week is a lost cause, too sick. The second week is a more normal week. I think I am going to try to bump up some house keeping this week. It needs it. It w ould be a good start.
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Oh Linda the girls are absolutely stunning. My God no wonder you are so proud. They have such kind serene faces and Bryanna looks just like you. Geez I can imagine her in her wedding gown. You surely have something wonderful to live and strive for and I can see they would adore their mum and nana.
No on going back for another look I can see they are both like you, you awesome lady.
Lana well done on your rads. Nearly there girl, keep going and yes you have been strong. Those beers will taste great to you.
Well done Mags couldn't have done better myself at that word. Shall we call you Julie from now on lol.
Titan woo hoo one month to go. You have worked really hard to get to five years and looked after yourself, must be all that running or the excitement of the casino. I will join you one day!!!! If I could prize myself out of my lazeboy it would be a start.
Go on Inspired, spoil yourself and have two squares lol. That's another thing I must give up. Never used to eat chocolate before chemo but there are so many left over from Christmas. Just let them go to waste can I lol
KSMatthews sending lots of prayers up for your friends. What a terrible thing for all of them to go through at the same time. The only good thing, if there is one, is that they will all support each other.
Tewriter don't worry about the house keeping it will always be there. Save your strength to get well. Cleaning can just wait.
Been gardening today. It looks so lovely. Laurajane would be so proud of me. I have a three day weekend and also took Friday off to go with it so it was a lovely break but Tuesday is coming around quick.
Off to bed. Goodnight ladies.
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I maybe should have gone into more detail on the house cleaning. I am doing my office early this morning for a bit. I work from home quite a bit so when we bought our house out in the country it had a home office. well I am turning it nto an office/craft room this year. My son and his fiance seem to think it is okay to play horrendous music at 10 decibels to clean. Yesterday they miserablized the enter house for around 4 hours with their gawd awful music.After I have had a healthy dose of coffee say 9am Blake Shelton's Kiss my Country Ass shall reign supreme and awaken the entire home. Followed in quick succession by you and tequila a few others. They hate country.
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Hi to All,
Haven't posted in a while. I finally was lucky enough (sarcasm) to catch what I term the family cold. Started with my grandson, son-in-law, husband, daughter, me, son, only one still out is daughter-in-law.
Let me tell you I had forgotten how much mucus the sinuses can produce.
Sore throat, swollen glands, painful sinuses, plugged ears, headaches. The up side is no chest involvement. All head. Some days opening my eyes hurt. Today is day 12 & I finally think I have turned the corner. So very tired of the gagging, blowing, & just dribble nose. I couldn't go to my yoga classes. Exercise what's that? Not in my condition. Too much blowing to try to do anything else. Ran out of tissues and attacked the toilet paper stash for blowing. Rudolph has nothing compared to my red (sore) nose.
Prior to BC I very rarely got sick not even a cold. Have always had allergies but learned how to manage them. This was another ah ha moment. Don't take anything for granted. I did have a moment of worry when glands got real tender. But was able to "Dutch Uncle" talk myself back to sanity & not panic mode. Does anyone else get those times when the "what ifs" try to take over your brain?
The family has been keeping in touch by text messages as some of us lost our voices (me included) for a couple of days.
We kept each other going & which ever one of us was healthy or the strongest did the grocery runs. We are very lucky to all live within 5 miles of each other.
Consensus is no get togethers until everyone clear for at least a week. No sense in relapses or passing a slight different strain of this miserable bug.
At least our weather is not too bad. Cold for Miami but to warm up again.
To all the good news I add my woo hoo!!
To those fighting & worrying we love & support you.
Take care all,
Marsha
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Titan, Inspired and Annie -
Awww, thanks for all the compliments on the girls. I adore them both, just wish my daughter Jen lived closer, being in Minnesota, and the rest of us here in GA, doesn't make for a lot of visits other than the holidays, but at least I know she is happy, healthy and thriving living up there with her Arctic weather!
Love to all,
L.
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Tekwriter - Don't worry right now about trying to be more active during chemo. Put yourself first right now. This is the one time in your life that you really need to put yourself first, and to let the treatment do its thing. When I had chemo, my Onc was very serious about telling me to not push myself. Do what I wanted to do he said, but if I started to feel tired, he told me not to push myself, but to stop for once and rest. If something is driving you bonkers, and it makes you feel good to clean, then it's probably healthy. Only do what you really want to do, and don't push yourself - your body will tell you when it's time to get up and start moving. Don't put yourself on a preconceived plan of what you think should be happening or where you think you should be - everyone is different. Play it day by day and see how you feel.
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this weather is nasty....Annie...can we all come over for summer with you?
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Hey Ladies and ALhusband,
I am sorry I have yet again not been here to offer support. A lot went on last year and some is carrying over to this year.
I lost my dad in February, my beloved dog in April and then my other beloved dog in December. She had surgery to remove two cancer in March and we thought
all was clear, but we all know how cancer works. Everything was fine and then she got this "bruise on her belly" .......wrong. It was the first sign of lymphoma and we lost her not a little over a month later.........we tried chemo, but she did not respond. My heart is still broken. I went through chemo for the second time and had to do radiation. Then hubby's work has just gone all crazy and to spare the details, it has brought a bunch and I mean a bunch of stress to us. He is looking for another job, but jobs are not just around every corner anymore. With my cancer we have to make sure I have some kind of insurance. I am just really stressed. My brother was suppose to have open heart surgery and he got the flu right before so it was put off and has been rescheduled for February. Then there is me..............Oh I am just a whole Oprah story in its self.......I have gained weight instead of losing, I am NOT NOT NOT eating right, and get no exercise other than letting the dogs out....(we got a new puppy). On the exercise part I have to be careful with my heart issues and my back, but my eating.............what the hell is wrong with me.....:( I still have major issues with my lymphedema and tightness from the radiation and other stuff you all know about. I need to have my gallbladder out and probably my ovaries just to have a life of no pain............but I am CHICKEN!!! Don't beat me up to bad because I do enough of that myself. I guess the bottom line is I am miserable and do not know how to get over it. I have to be the one to do it, but just don't seem to care enough to do it. I think it takes to much energy which I don't seem to have or just don't care............maybe a little of both. I don't want to die, but I am terrified to live. Being agoraphobic makes EVERYTHING WORSE too.......
As always I wish the best for you all and I am sorry I have not been here............seems to be the same ole story with me, but hey it's my party and I'll cry if I want too.........:) : ) Seriously though, I don't like to bring anyone down but I need to vent to those who understand what is behind all my fears, and pain. Has anyone else had Lymphocytes that were low after chemo? Mine are low but the doctor did not mention it, I seen it on the results. I know chemo can make them low and I am hoping that is why she is not concerned. I will be talking with her about this, as it has me scared.
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