Calling all TNs

Teka

Irr4993,

I had my last mammogram January 2010.   You should talk to medical and or radiation oncologist to see if OK to put mammogram off until later this year.   No specific guideline for post treatment mammograms.   I am not doing an MRI.

Luah

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.   

Anonymous

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.

lrr4993

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.   

Teka

Irr4993,

My medical oncologist and radiation oncologist were putting mine off for a year, because of chemo, severe radiation burn, Avastin, and truncal lymphedema.   However, sore lump up under (L) breast made mammogram and ultrasound necessary.   I now feel relieved that only a painful cyst.   I hate follow-up tests.

Anonymous

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".

Lynn18

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."

Anonymous

Lynn- Yes! That was another good one!

Titan

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..

Survivor2Be

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).

Anonymous

How's everyone doing?

Angelice

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  

riley702

Heidi, love the cats! "Hey, what's going on?"

And made a LOL Cat out of it!

slcst12

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

Luah

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.

Lynn18

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. 

tracie23

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.

Titan

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.

Teka

Check out HIPPA on-line.

Suze35

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!

Titan

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.

Anonymous

Titan--- I get kitty kisses all night and puppy kisses all day. My one cat *loves* to lick me!

MBJ

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!!!

JenC

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.

Fighter_34

Titan: I wish your uncle the best.

Insurance companies will always try and take you through obstacles before they decide to pay. Hang in there Tracie23.

Started the clinical trial yesterday. I think I am going to like it. Remeber ladies to always ask if you can do anything more to help yourself????

Teka

HIPPA has specific guidelines for preexisting condition exclusions.   Preexisting condition exclusion can last 12-18 months depending on the enrollment date, or less depending on prior creditable coverage.   Tracie23, is probably being held to HIPPA guidelines.  

Babs37

Fighter- What' s the trial that you just started on?

JenC

Just got another message from Suzie somthing about that "pay us 100.00 thing"  Any suggestions on where I can report this.  Thinking possible illegal solicitation and am going to look into it.  Are alot of you getting this?

Fighter_34

An immune boosting trial being sponsored by NCI (National Cancer Institute) 4 slots are left. However, I see that you are in Quebec correct? There is a lady from LA that participates as well.

Anonymous

Fighter- I could not find this trial. What is it's specific name and where is it being done?