TRIPLE POSITIVE GROUP
Comments
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thinking of you today Tonlee...
fluff...i feel the same way about always feeling like i am on the bad side of the stats. Less than an 1 percent chance of having BC with no risk factors at 42. U/S and mammo, looks like its 50/50 its cancer. After biopsy its cancer. Hopefully not aggressive type if yes we will start chemo right away. Guess what, its aggressive Her2, you start chemo next week...WTF just happened, you all know the drill.
SK - i am not even close to where you are in reconstruction but i would definitely do the fat grafting to fill in any areas. I could really use a tummy tuck after this tamox belly. I am blaming tamox. Thats my story and im sticking to it
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Thinking of you TonLee..
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TonLee, I'm the same as you, I never nap. So when I felt sleepy at 11am I knew it had to be the Herceptin. I did get Zantac with it since I'd been having bad heartburn from the chemo, but that's it. Anyway, I hope you get your test results back soon. I know for me the worst part is always the waiting. Thinking of you today.
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fluff - they put me in some kind of wrap thing - much like a bullet-proof vest - which I don't think is compressing me enough. I am wearing my own Spanx from the waist down. He did say I need to wear compression for a while, I have a call in to his office right now to find out if I can stop wearing the thing they put me in, and start wearing something that fits better. Was your shaper full-body?
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Thanks for the well wishes and pray I can make it Philadelphia this Wednesday without pooping in my pants along the way!
And yeap, herceptin makes me sleepy. It also makes my nose run, but no headache, which is a blessing.Ton Lee, we are thinking of you. I want to hear good news!!
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rozem and fluff (and others) - I feel the same. Am finding it impossible to see me on the good side of the stats. Positive node, LVI, extra capsular extension, 90% ER, 100% PR, Ki67 at 60-70%... Really, what else can I assume... And, this is what is making me cry almost daily at the moment and why I have an appt with the psychiatrist tomorrow. In some ways I weirdly feel like I will only be happy again when I find my fears come true and I move to stage iv. At least then I would be allowed to plan for goodbye, rather than having to be so damned normal and cheerful as an early stager. Weird huh?
Tonlee - I have no words for you. Just a big waiting hug from across the distance...
I finally have a day for my ovarian cyst surgery - this Thursday! The persistent complex cyst (means it might be cancer or turn into cancer) on my right ovary, and my right ovary are coming out. Hopefully keyhole surgery but since I only had my free TRAM at the end of September and there is mesh in there, the gynae surgeon has no idea if keyhole will be possible. He had to phone my plastic surgeon to get advice and has said that if it's not possible he will have to move to an open surgery which will leave me really looking like frankenstein with the free TRAM cut having already given me this scar from hip to hip. Either way, due to my recent abdominal surgery I will likely have more pain than would be usual. I'll ne waiting on pathology/histology results over Xmas :-/
Oh, and I'm being very casual and upbeat about this surgery with family and friends of course. Can't upset the kids, depress the husband or make my friends think this might be something serious when it might not be... so I continue to cry, sob, wail inside. It was such a relief to sit in the psychologists office last week and just spill all my real fears and feelings and cry for an hour.
Jenn0 -
jennt - holding your hand from across the distance...
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Big hugs TonLee. Hope you hear something really soon!
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Jennt28.....
Again Jenn.....we all know and care about what you are experiencing right now.
Alas...this is the new reality for all of us. Having people we can lean on honestly and openly through these crises is vital . Unfortunately for many of us and for many reasons family and friends are not always a viable option.
We re here to listen.0 -
Jenn,
Wow that stinks.
Is there any way they could take the ovary vaginally? I was offered a vaginal hysterectomy.....that way they wouldn't have to mess with your reconstruction. I don't know if you want to go that route.....
You're right about this being the place to share. I was thinking today that stats are stats, and if I stay here at BCO, with a few of the women I went through tx with (time frame wise) I'm going to see someone(s) recur. It may be me. Who knows.
So I couldn't type this all on my phone...and just wanted to share....my doctor looked about 12...lol. It was kinda funny because he manipulated my legs and back to ensure it wasn't a joint issue.....and was oh so careful not to suggest mets. I waited and waited, it kind of became a game dancing around the elephant in the room. He was being so careful with my feelings!
He went through the whole exam, the prescriptions, blah blah blah. Then at the end said, "Just as a precaution I'd like to get an xray of your spine."
I almost asked, "As a precaution for what?" (This is a general practitioner not Onc). lol
But I had mercy on the fourth grader and told him, yeah, of course we have to check that. buwhahaha
He looked so relieved that I didn't have some sort of melt down. THIS is why I go to a GP with problems and not my Onc. My Onc has seen it all. He has no reservations about skipping a PET scan for me. None.
GPs don't deal with cancer daily. It makes them nervous. They're more anxious about one of their patients having mets, complaining of pain, etc. At least in my experience.
This GP said if there was anything fishy on the Xray...he'd send me for an MRI asap.
Um....awesome.
There was plenty "fishy" with my original cancer (we knew it traveled outside the tumor, had set up its own blood supply for instance), but the I-see-this-everyday-doc wasn't impressed; didn't feel it warranted a scan.
I can't fight without information. IT's like going to war against the wind.
So I'll get the info in a few days...maybe tomorrow if the radiologists agree I need an MRI. Also I didn't freak out about all the extra Xrays because TRAINING FACILITY. More often than not, as I've mentioned before ad nauseum, I get the new kid. I didn't say anything because it only cost me about 5 extra minutes, she was trying her best, and I wasn't in pain from her machinations.
My husband has no idea. He thinks I went in for a little back ache.
And who knows.
He may be right.
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TonLee - thinking of you today and hoping you get good test results, and soon!. ((((hugs)))) to you.
Pbrain - you are heading to my neck of the woods. Hope you enjoy your time in Philly!
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Thinking of you TonLee and Jennt, too!
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(((((TonLee, Jennet))))))
Pbrain, if you are traveling, try taking the prescription stuff they gave you for the trip. I don't usually advocate premedicating, but traveling with the big D is HARD! And. Um, I took Depends with me one in my purse in case I didn't make it. Not fun, but better than smelling.... Good luck.0 -
(((ToniLee))) ....just saying.......ask about an ultrasound of the gallbladder area....I don't think that shows on an X-ray or even an MRI.
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Hey, we haven't seen Lago around for awhile. She must have secured a job! Hooray!
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just thinking about lago...
jenn ((((hugs)))) i notice you were diagnosed last year dec, anniversaries are so difficult, especially around the holidays. Tamox, diagnosis/anniversary dates, surgeries etc it's no wonder we are in a depressed state. I had my last chemo dec 16 last year, was not a good day this year. Im glad you are seeing someone, i hope it helps. I saw 2 different psych's, i can't say they helped but i don't think i gave it enough of a try. I gave up after the second one told me about a "friend" who had BC and didn't make it. Yes, folks the psych decided that would be some good info to share with a patient
tonlee - i always get the new kid, i think the intern or maybe the guy who cleans the floors at the hospital did my surgery. I swear instead of a expander someone decided to implant a tupperware bowl from lunch.
keep us posted, sending prayers from your sistah in the great white north
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Newbie here, just poking my head in to see what people in a similar situation to myself have to say. Perhaps as I become more comfortable with what's been going on in my life recently I can add to the discussions somewhat. It's good to see that I am definitely not alone out here, and that this group seems so positive an supportive.
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lago posted on another thread that she is working.
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Welcome Shanny - we always have the love/hate thing going on welcoming new members but you will find great friends/resources/support here.
Thanks Omaz. I know when she's working, she's absent from the blog.
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Jenn...you really gave me something to think about. I think you are right. Instead of trying to live my life in what I hope is with no evidence of disease, I am sadly anticipating the shoe dropping. I am going to try to really work on that.
This time of year is tough in general I think, and we are much more emotional when we are with our families.
Tonlee....you are like my 85 year old mom. She won't tell anyone about a problem and then suddenly the bomb drops. Makes me insane, lol. I swear I am going to receive a call one day where she says oh by the way, I won't be here next week. She has always been like that. Called me at work one day to say she drove herself to the hospital for chest pains and they thought she might be having a heart attack. Ok, let me just finish my paperwork and ill drop,by. Lol. Seriously, she drives me crazy.
SpecialK...we're you able to see the link to the garment I have. Mine did not have the thigh part because he never took anything from the thighs. Otherwise it would have been the longline one.0 -
welcome shanny! fellow canadian here
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TonLee, I am still so hoping it's the gall bladder thingy or ... whatever. We're here for you but I hope you don't need us!
Jenn - I'm glad you're seeing someone, I hope you can get some relief soon.
Pbrain - good luck tomorrow!
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Welcome Shany, and sorry you have to be here.
To all much love.0 -
steiner, I'm not sure if you're aware of it but TonLee ended up with a herceptin problem (ejection fraction). I don't know if there's a trend here -- herceptin infusion makes you tired > greater likelihood of developing a problem. I felt tired, but that basically meant going to bed at 11 pm rather than after midnight, so that doesn't sound too worrisome. You might ask for them to slow down the drip. I am probably getting a drip of saline at the same time because I am on a double blind clinical trial -- not sure but I think more likely than not I am in the placebo group.
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Sitting here in my 4th last herceptin. Had to "put my foot down" and say I wasn't going to let them run the herceptin without me having seen the Echo result from the test I did last week. They thought they had the most recent one and were telling me that my LVEF was the same as last time - but the copy they were looking at was from September!
Turns out my LVEF has gone down a few percent but still sitting at 63% so I am OK with that since we moved from MUGA to Echo this time and there was bound to be a slight difference.
I can't believe how casual they are about our hearts sometimes...
Jenn0 -
Jennt - Good for you for insisting!
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Wow I'm missing so much--TonLee I's sending hugs for good news ans Jenn too. I think gooing thru testing is so stressful just being in a hispital anymore is a pain--I have to o today and I icking it for no reason, just cuz I don't want o be bothered.And it's so true how young all these Drs. are that hod u'r life in their hands. The last time I asked to see his License--he pointed to the wsll and I said no u'r Drivers License.
Welcome shanny--just pop in when u;r ready, all the ladies here are very warm, caring and knowledgeable (not me) So ask away, rant away orshare u;r knowledge--we welcome all.
Of course my D came back but this time I didnt have it for 3 days--how nice--so I'm loaded up on my meds.every so often I get a few days brake from it.
rozem I hope u'r doing allright.
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Where is everyone today?
I know, it is Christmas. I'm trying to decide on my immodium strategy for my trip home tomorrow. Bren, I'm a Philly native, lived downtown for most of my life. Where are you from in the area?Ton Lee, we are hoping we hear bone spur from you in a day or two!
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I like your photo, PBrain.
Also, have a safe trip.
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Ah thanks, that was last Spring when I had hair. As much work as it is, I really miss having hair...sob, sniff...
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