Calling all TNs

ARKIEMAMA

wow ,can't believe in this small rural area i live in i had all of these done,dx.in 2005-2006 had pet scan,ct.,mri's and anything else u can think of still dotriple neg.very rare b/c though onc said i will see him the rest of my life,great fun and he's always running tests,of course that doesn't help with the bills.....ARKIEMAMA

 still fighting like a girl

Luah

mmizerak: I have not had any PETs (they are not done here except for advanced cancer cases, for a variety of reasons that in my opinion are very valid), nor CTs through treatment. At diagnosis, I got abdominal U/S, lung xrays, bone scan and a MUGA at chemo start and finish. I suppose these scans might have been escalated to a CT if anything suspicious showed up. Since treatment, I only have scans if I have worrisome symptoms - hence a neck CT for enlarged nodes and bone scan for back pain, both of which turned out to be unremarkable.

In my opinion there is a very real downside to continuous PET and CT scanning for early stage BCs (false positives, excess anxiety, unnecessary radiation), and it's interesting that in single-payer, not-for-profit public health systems such as Canada's it's generally not done. Hope I haven't offended anyone - I know some women like to get scanned for peace of mind, and others prefer to forego the anxiety. 

Tooky: Glad you made it through, and sorry to hear the PICC line was such an issue - good thing it's in now and you don't have to put up with vein injections all the time. 

mags20487

congrats Tooky...the hardest one is behind you!

No offense Luah...we are all different in our preferences for sure.  I personally like the scan behind me once it is done. 

Mags

PinkyWI

Tazzy -- wishing you luck tomorrow as you head into surgery.  I only had a lumpectomy so I cannot speak for what you will be having done but, the day of surgery, there was a peace that came over me and I was not scared or frightened in the least.  I'm thinking that I was glad to get it over with an go on to the next step.  I'll be thinking of you...

Mmizerak -- I have not had any scans at all, and my MO does not plan on doing any.  I keep a journal of any aches and pains I have and he will address them...his feeling is that the scans affect your quality of life.  I said that I was worried about becoming a hypochondriac and he smiled -- meaning, I think, that that is normal and he has ways to weed out the real issues from the not so real issues.  Unfortunately, like you, I have a very high tollerance for pain and worry that I will ignore a sign when in fact I shouldn't -- this is a discussion I will have with my MO at some point in the future.

Bak94 -- I'm sorry that your sister is going through the foreclosure but, in her defense, I too have been unemployed for three years (3/31/2009) and get close to a job but "no cigar".  Companies just do not want to hire us older people -- trust me -- I just turned 62.  I know that I am very lucky because I do have a spouse with an income and insurance but others like your sis are not so lucky.  My mother-in-law says "I would just take any job" but, it is not that simple.  When you take just any job, it takes away from the time you need to look for a real job.  Job search and BC are kind of the same -- people like my MIL say things when they really do not understand and have not walked that mile in our shoes.  Good luck to you and your family, I hope that things come together for all, and soon.

Lady_Miz

Thank you for all of your responses - quite a mixed pot, go figure!  I guess I will just try to follow my gut and when that isn't speaking clearly, I'll follow my oncologist's lead.  There are a few questions that I am definitely going to have addressed before I relax completely but hearing all of your opinions/experiences really helps.

FernMF

Received my Neulasta injection today - I am a CHICKEN for shots, so after my fear-tears, it was over.  I requested the shot to be warmed (they had already done that) . . I asked about getting it in my stomach as Sylvia suggested, the nurse said that they never administer in the stomach at this place.  I haven't been there long enough to KNOW for sure, but feel confident they are competent and caring . . . so, in the back/fatty part of my upper arm.  No problems.  So far, no side effects.  God is Good.  Thanks for all the good news from you who are having anniversaries of note.  This is WAY encouraging to me, a NEWBIE.

JAN69

Christina19 - Thanks for the link to a very hopeful site.  I'd get in line for that drug combo if I could.  Very interesting.  Jan

Babs37

mmizerak: At dx, had a PET scan, bone scan, breast mri. Had a chest x-ray after chemo/mx to get my approuval for the metformin clinical trial and another abdominal scan and US last march because of stomach issues.

Good luck with surgery tomorrow Tazzy!  

LNBCA

dgcote-the same thing happened to my mom. Blood clot in the arm from her port. That thing never worked right for her.

bak94

So sad. We just lost another triple negative sister-blondelawyer. She did not post much here but had lost her husband to cf the year prior to being diagnosed. She was 34. A beautiful, bright woman. Never had a chance to enjoy her career that she worked so hard for, being a lwayer. I am heartbroken. She went to the same cancer center I go to, but I never met her.

bak94

Thank you all for your support with my sister. Thank you pinky, you are so right, I don't quite get it because I have not been there. I just don't see why no one would hire her. I do think age discrimination does exist. She is very good at what she does, and it would be hard for her to get a job in something she has no experience in. The loss of a triple negative sister puts it all in prespective, my family will stick together and do whatever necessary to help my sis, it will be ok.

kathyrnn

Lory - congrats on the test results. Have you had a previous scan done on your lungs? I had 4 nodes on my lungs pre-tx, and when they checked post-tx they hadn't changed, so they weren't concerned by them. They aren't planning in checking them again, but my PCP says he will.



dgcote - How scarey that must have been for you. Wishing you clear sailing from here on.



Tazzy - schooch over on the table, I plan on giving you a big hug thru the whole thing. Also, take your pain meds if you need them!



Cocker - I'm so sorry and sad about the 50/50 odds. (Geez, couldn't they at least said 51/49). I'm voting for 50 Shades of you'll kick it to the curb my spunky little friend. Already read all the 50 Shades, lol. No fun or gambling here. I'm busy this week being a sh*t mover this week. Have to clear areas so they can drill for for the termite poison. Spent yesterday clearing some shit out of Mom's spare room, to make room to move shit from porch to spare room. I swear she never threw anything away her whole life!!!!



Jazzy - congrats and enjoy your visitors. The joy of loved ones is the best medicine.



Fern - *waves Pom-Poms *. Glad it went well



Jan - good luck with your US tomorrow.



Pinky - what a sweet surprise from your hubby.



Bak94 - sorry your in such a difficult situation. Maybe your State Bar Association can give you a referral to an agency who can give her some free legal assistance?



Bernie -loved the visual. Knew I was old when I realized some of the positions in 50 Shades would

put me in the hospital.



Christina - thank you, link was good news.



Mmizrrak - pre-tx: CT of chest and abd, bone scan, breast MRI (no PET). Post- tx: Breast MRI and chest CT (only because of nodes). Will have no further testing except an annual mammo.



Tifj - hope you and the wee ones get a break from the heat.



Fishinurse - (HUG)



Mags - when I'm tempted to complain about the heat I remember all you ladies who have to wear sleeves.



LuvR - could you bottle some of that energy and share?



Tookybum - Yeah for chemo one down. Your MO would probably help with the sleep meds.



Arkiemama - great to hear from someone 6 years out and doing well.



Luah - no offence, good to hear another perspective.



Everyone have a wonderful day, I'm off to shovel shit. ( even worse, it's a glassed in porch, think heat like a greenhouse!)

CatWhispurrer

Thanks Christina for the link. It sounds promising.  I wonder why they say TN is metastatic as if ALL TN is metastatic?   I also wonder how they test to see if that genetic marker is disabled?   I guess we will find out more when they do further testing.

Mmizerak - I had a CT/PET scan after diagnosis when my nodes started to become enlarged.  Thankfully, it was neg.   I haven't had one since and my doc's don't order them after treatment unless there are symptoms.

mags20487

thank you bak for telling us about blondelawyer...she was in my august surgery group.   sadness indeed abounds as we all mourn the loss of our sister who was stolen too early!

Mags

CatWhispurrer

Bak94 - I lost my job of 12 years two years ago also.   I cannot find a good paying full-time job.   I am a part-time vet tech for minimum wage and cannot help hubby break even on the bills so our savings is going down.   I was a network (computer) engineer with a big salary.  I was a legal secretary before that for many years.  I cannot even get anyone to call me and I have been sending out resumes everywhere.  I think that my age, lack of a degree (I self-taught and worked my way up to the top), and them thinking I am "overqualified" are all working against me.   I feel really horrible and useless some days.  Thankfully, my family has held a couple of fundraisers to help pay the medical bills.  It sounds like you and your family will support your sister through this but I can tell you, it is still a tough economy to find a job when you are older.

kathyrnn

Thank you Bak for letting us know. Blondlawyer - another sister gone way to young, but I hope you have been welcomed by your husband and are in a place of joy.

Tookybum

New hair cut.

   Before

  After

Could you imagine the mess when it starts to go.  My husband did it for me.  I think he saved it but not exactly sure.

BernieEllen

I remember blondelawyer.  so sad.

bak94

I am just so upset today. So sad about blondelawyer, sad about life in general and what many have to go through. Blondelawyer and I had very similiar diagnoses and diagnosed the same month, mine was later stage than hers, treated at the same cancer center, my cancer responded, hers didn't. Why??? What is this all for? We fight and fight and it still gets us in the end. Sorry, just so upset today. Too much going on.

PinkyWI

(((((bak94)))))

PinkyWI

Tookybum, you look beautiful!

mitymuffin

Oh so, so sad about Blondelawyer. That is just terrible.

mitymuffin

Inmate, Love it!

GuyGirl

I had Mamogram and then a sonogram prior to excisional biopsy on 5/27/2010.  After biopsy I had a CT/PT Scan, bone scane, and MRI.  I then had a lumpectomy, and a sentinel node biopsy where they took one node.  I had 4 dose dense Adriamycin and Cytoxen and then 4 dose dense Taxol chemo treatments followed by 33 radiation treatments finishing up Jan 18 2010.  I had a PET/CT Scan and a Mamogram in June 2011 and a PET/CT Scan and a Mamogram in December 2011.  I had another PT/CT Scan in June 2012 and will not have another mamogram until December and then I will get another PT/CT Scan.  My Oncologist is all for me receiving PT/CT scans every 6 months for peace of mind and my surgeon thinks it is overkill.  Personally I hope to continue having the scans until I am 5 years out.  I just lost a friend a month ago to this disease and she was not having scans and the disease caught up with her without her knowing about it.  I prefer to know so that I can fight.

Luah

I'm so sorry to hear about blondelawyer too - I remember her posting a while back... lovely spirited young woman, who had been through so much. 

Bak, one thing I keep reading about TN is that some tumours respond and others just don't - it all seems like a bit of a crap shoot, but there is a lot of research going on to discover the attributes of TN tumours. Sadly, it just takes soooo long, and we lose sisters in the meantime.   

bak94

tooky-you do look beautiful!

guygirl-my insurance just decided not to pre approve a routine bone scan for me, mo is still trying to get it approved. I don't get it, I am technically stage 4! I do not like the stress of scans, but I am kinda glad my doc makes me do them, he says pet/ct once a year, bone scan every six months until my next one then also once a year. Now only if my insurance will agree. I have been having hip pain, maybe that will help get the bone scan approved.

BernieEllen

bak, my darling.  I so wish we had the answers.  Big hug to you.

bak94

Catwhiss-I am sorry you are going through that also. Exactly like my sis, too qualified for a lot of jobs so they won't hire her, and she doesn't have a degree so certain jobs won't hire her because of that. I am 45 and going to school for a career change and I wonder if it is worth it, the cost of school and then the chance that I am too old to be hired. I sometimes think I should just stick to my haircoloring job, chemicals and all! Man, I am so sorry to be such a downer today, I need to snap out of it! I have so much to be thankful for. First of all, thankful for all of you understanding gals, thankful that I am so close to my family, thankful for all of my crazy animals, thankful for my exceptional husband, who has been through it all with me (even though I complain about him sometimes). I am thankful I got to know blondelawyer on these boards. Life is such a mystery. Ialways want to know why things happen the way they do. Is is coincidence or does it have some greater meaning. Weird thing was last night I could not stop thinking about blondelawyer and was looking for all of her old posts to see if she had posted anything more recently, and then the news of her today. Maybe she was saying goodbye...and I never even met her.

BernieEllen

Hi Bak, my friend died of BC the day i was diagnosed.  The night before I dreamed of her and she was happy.  I like to think that I am a spiritual person.  I truly believe - it is not in our hands - so I accept that we pass on our memories of all the good times.  that way the person never really dies.

Do not stand at my grave and weep
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn rain.
When you awaken in the morning's hush
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there. I did not die.  

TifJ

Big hugs Bak. I posted not too long ago asking about Blonde- so sad, so young. I hate BC! I sure hope things turn around for you soon.