Calling all TNs
Comments
-
Sending special vibes your way DIVA!!!!! All will be well.
0 -
Titan - good vibes comming your way from the Northeast.
0 -
Youwearpink: THANK YOU!
0 -
youwearpink: So glad you came back to post - thank you!
Titan: Does instinct count? I just feel like all will be fine for you!
FWIW, I had my 18-mo mammo. about a week ago. Yesterday I called to check on results. Happy to say, all is good -- and even the suspected microcalcifications that led to a 6-month follow-up mammo have "resolved." Just normal post-treatment changes. I wasn't too stressed as an MRI in January was okay, and to be honest, I worry a lot more about distant recurrence. Still, it's nice to get an all-clear. Second anniversary can't come soon enough!
0 -
Re LVI.. my path report said "negative", so none was found. No node involvement either. I truly believe my small 3 mm IDC had just started because the only thing found after mx was done was all DCIS and it was small too.
Florene: Many of us had very mild SE's after the first treatment. Some of the SE's do build up... some people have greater SE's as they go... some don't. There is a thread called "Anyone on Just Taxotere and Cytoxin" that you should read, if that's what you're getting. Let's hope your SE's stay mild...
Titan: Praying for a clean scan!
Youwearpink: SO happy to hear from you! Especially being BRCA+!! Thank you for posting... it helps us in so many ways!
RE Biotin... I take 15,000 mcg a day, or 15 mg. Been doing this for a few years now and yes, for me I've noticed a difference. Omega 3 is also extremely beneficial from what I've been told. Been taking it ever since I was told to do so before Lasik surgery.
0 -
Drive by posting!
Titan - all of my positive thoughts headed your way! I think you'll be fine
!!Re: Oncotype - it typically isn't done for TN for reasons Riley stated, but for some reason, my MO wanted it. My cancer stopped responding to the chemo I was on, and she thinks this may give her more info. I have no clue why, lol, so was just seeing if anyone else had one done.
0 -
Sorry for the slow reply - saw my Onco today.
Couple people said no chemo, no rads was "-playing with fire."
Treatment protocols don't recommend radiation for stage 1 with mastectomy. With a lumpectomy its a completely different story.
Yes, we tried to run the Oncotype DX test....and they were unable to even run the test! It can't be run if you are ER- it seems so that's of no help. It did confirm the ER-, though, about as definitively as you can get.
Today had a CA-15-3 drawn, along with CA-125 for ovarian cancer and a test for circulating tumor cells.
So, its the chemo question...there's two things that would be a maybe, boith of which I'm not a particularly good canidate for (history of neuropathy, liver trauma, ect.)
I'm OK with the idea of just kinda hanging out. Its a strange little gray area where the benefit of chemo is about equal to the risks. Should have my BRAC test back soon, and if that is positive the ovaries and my right breast will be removed. I'm going to eat right, get my exercise, and try to catch my full 8 hours of sleep.
0 -
Good info here:
Unfortunately, the one thing I kept hearing during these two audiopods was *five* year window for recurrence rather than the 1-3 I typically read/hear. Don't like that at all.
0 -
Question for those of you doing post treatment mammos. My first is in three weeks. My breast is still sore from radiation and has a large lump of scar tissue. I am in fear of the pain from the mammo and I question that it is even worth while with the scar tissue. Any thoughts on this? I am doing an annual MRI as a back up, but that is not until later this year.
0 -
lrr4993: My first mammo at 3 months post rads was uncomfortable but not too bad. The most recent one at 9 months was actually excruciatingly painful for the 3 seconds or so while they took each image. Maybe this was because more scar tissue had built up, or because they were being extra thorough to follow up on an earlier suspicious finding, or because I had nurse ratchett as a technician - who knows, it hurt! I wished I had taken some tylenol beforehand.
I had also insisted on an annual MRI, as my tumour was not easily seen on mammo (and I am TN), and my onc went along with that. I try to stagger the scans and figure I can stay on top of anything that develops, TN being fast growing and all... mammo in fall, MRI in spring -- that kind of thing.
0 -
Irr- I had a mammo pretty soon after tx ended (3 months). It wasn't too bad. Recurrence often occurs on the scar tissue, so I'd *especially* want that checked.
0 -
Thanks teka. Technically, the six month mark for me was a couple of months ago, but I was much more sore at that point and my onco thought it was best to push it back til now. Apparently they don't like to do them right after rads. I am concerned about pushing it back any more. I have so many lumps and bumps and, although I don't think they are of concern, I would like them checked.
0 -
Just finished two hours listening to the LBBC audio podcasts on TNBC:
Latest Medical Updates
&
Managing Fear of Recurrence
Both were worthwhile to hear, IMO. I especially liked the quote "Courage is fear that has said it's prayers".
0 -
Heidi: I am listening to the podcasts also, thanks to your link. Excellent information, I saw the Powerpoint about "Managing Fear of Recurrence" and I also like this quote "Goal: to live as if the cancer will never return. Whether it does or whether it does not, living any other way makes disease the victor."
0 -
Lynn- Yes! That was another good one!
0 -
Heidi..thanks for the quote..I do feel that we tn's have lots of courage..we have to..to just get through this fear....
I think if "they" would have put us TN ladies on Osama BL he would have been "gone" along time ago...we would show no mercy...ha ha.
And thanks for the good vibes..I can feel them..truly....I just want to get the dang mamo over with...
Hm...5 year window huh? Well..we know better..they are probably just trying to cover their A*8ss. I
My uncle was just diagnosed with lymphoma..not sure what kind...at first my aunt was freaking about how it could happen to them...but I think she is coming to terms with it..I told her that he will need her...(I wanted to say that she can't go freaking out...that she needs to support him)..but the onc says that it is treatable and he is in good health despite the cancer..
He has the same onc I do and when they mentioned me he said that I was "high energy"..funny stuff..
0 -
Just finished my second round of chemo. Now I'm getting ready for the bilateral mastectomy. It will be tissue sparing with delayed reconstruction (no expanders) in case I need radiation afterwards (I'll be doing the DIEP). Any suggestions on what I need to have for discharge (bras, camisoles, etc).
0 -
How's everyone doing?
0 -
cute cats Heidi im well and how are you ?
im almost done in rads i have 6 to go from 33, so excited, im pealing and blisters under my breast and its all dark round were the rads has been given, and stings but not long to go
0 -
Heidi, love the cats! "Hey, what's going on?"
And made a LOL Cat out of it!
0 -
Hi Ladies
Thanks for all the answers to my questions! Some of this stuff is just so confusing sometimes!I love the cats Heidi
Titan, I'm sorry about your uncle, but LOL at the comment from your onc
0 -
Heidi: Those cats are too funny! Thanks for the laugh. I participated in those TN podcasts - I agree they were very good, though I might have liked some more practical tips from the scecond one on managing fear. However, the "live as if the cancer will never return" really resonated with me.
Titan: Sorry to hear about your uncle, but it sounds like he's in excellent hands.
Have a nice day, all. The sun is finally shining again here, so I'm off for my power walk.
0 -
That pic makes me want a kitten, or two.
Does anyone want to be my facebook friend? I have been playing "Words with Friends". PM me if you want to.
0 -
Hi Ladies, I am having a terrible week.... my legs hurt so bad I had a massage today and it's even worse... the oxycodone is not even helping and I am having anxiety attacks left and right. I truly wish I could run away... I am trying to set up for ooph and tissue expander's in June and my insurance is still saying everything from last June is pre existing... my pe falls off June 1st but I feel like I am in limbo and I can't even think straight. Thanks for listening.... I hope everyone is having a good day.
0 -
That really ticks me off about your insurance company Tracie! I just don't understand that..I thought Obama care was supposed to take care of that pre-existing crap.
0 -
Heidi - love the cats!
Titan - I'm sorry to hear about your uncle. I'm glad to hear his doctor feels it is treatable.
Tracie - ugh on the insurance. I wish I had some advice. It sucks that you have to use valuable energy dealing with this.
Had my MRI today. I don't have the report, but the images clearly show a bulging disc. Ouch. The techs were whispery and stuff, but I think it's because they saw my lymph node on the scan and didn't know I knew. It is pretty clear in one image. I'm no doctor, lol, but I'm pretty sure the rest is clear. My RO will let me know tomorrow AM, he requested the images while I was still there.
Turns out my node was visible on the PET 3 weeks ago but just barely. So RO said NO BIOPSY, we'll assume it is bad and really hit it. I'm pretty sure it will exclude me from the clinical trial, so I'll be talking with my MO about starting chemo as soon as radiation is over, unless I can convince her to overlap (RO said he is willing).
Off to Dana Farber tomorrow...have a good night everyone!0 -
Ok Suze..keep us informed...you know..you really are awesome!
Tracie..uhmm..I think it is the LAW that if you have a masectomy that insurance has to pay for the reconstruction..check it out..it sucks you have to fight like this but dang it...
Heidi..love those cats....I just love cats...last night when I was sleeping my cat came up and licked my face..He is so loving... We found Eddie in our back yard when I was going through chemo..took him in...this maybe weird but I think he was sent to me....for a reason.
0 -
Titan--- I get kitty kisses all night and puppy kisses all day. My one cat *loves* to lick me!
0 -
Heidi: Love the kittens!!! I have one black cat that looked just like that when she was a baby.
Titan: Sorry to hear about your uncle and I am glad he is in good hands.
Suze: You have such a great spirit and your dr's sound amazing!!!
Tracie: I hate insurance companies. It's the worse, kick you when you're down mentality. My friend who had uterine cancer had her insurance company try to pull the same thing (Blue Cross). You just fight them to the end. Pre existing baloney!!!
0 -
Survivor2be - good luck with your surgery hope you are feeling well. You should check with your onc or surgion to see where they suggest you go to get a post mastectomy bra, they have some nice ones that also have pockets for the drain bulbs in case you have them and your insurance should cover them.
0
