Calling all TNs

OBXK

Inmate, I'm sorry you are having to go through this. Holding your hand, Karen

OBXK

Suzy - So glad you were having a 90 percent day! I hope it is a trend. Karen

inmate4232010

The spots are in "lefty" which is the same breast.  Has anyone else had spots show up on a post treatment scan?  Can the spots possibly be anything else other than cancer?  I am hoping that I just have new internal freckles, but that may just be wishful thinking.  This waiting game really sucks!

TifJ

I had my exchange surgery this morning!! No more coconut!! I can only feel the top of the implant as I'm wrapped pretty tight, but it feels nice and squishy!! So glad this is finally done.

Suze35

inmate - I'm sorry to hear you are playing the waiting game, it really does suck.  I'll keep fingers crossed that it isn't anything serious.  What type of scan did you have that picked it up?  If it was an MRI, yes, it picks up LOT'S of things that are not cancer.  I'm not sure about mammo's - I had one that was useless.  Please keep us posted.

Summer - I'll share that wine with you, lol!  I've actually cut down a lot, I have a glass of red every few days, and 1-2 times a month I'll splurge and have 2-3 of white on a Saturday.  I just love good wine, I refuse to drop it completely.

OBXK - Thanks .  I have been more motivated lately.  I actually had a 100% day today, yay!  I'm sure I'll blow it on the weekend, but I'm trying!

Tif - congrats!!  I hope you are feeling well and not too sore.

~~~

So guys, a bit of a downer day, although not too bad I guess.  I made the mistake of reading my exercise/diet journal from the day I found my lump.  I was so damn convinced it was an infection, I even commented that I couldn't possibly have missed such a big lump.  I miss that life .

The other thing is I am worried about my stepsister.  Little backstory - her mother died of ovarian cancer, as well as her aunt, though she is BRCA-.  They found some DCIS on her mammo recently, and given her history, she had a BMX.  She hasn't asked if there was any microinvasion, grade, or even ER status.  And today her doctor told her she had to have another biopsy on Thursday because something showed up on MRI under her clavicle, I guess the doctor described it as close to her spine, but I'm not sure.  I am sad, she is a nurse and knows she should better educate herself, but she is scared.  We are a very close family, so if you all could spare some positive thoughts for her, I would appreciate it.

I'm going to watch some old reruns tonight and cheer myself up with a little cross stitching.  I hope you all are doing well!

OBXK

TifJ - how exciting! Speedy recovery wishes.

Suzy - sorry you were mourning your former self. I was looking at a photo of myself, from last fall today, thinking... She had no idea. I am sending good vibes your way.

Titan

Inmate..what exactly are those "spots'?  I had calcifications in my "good" breast...4 of them in line..one was rod shaped (stupid thing)..this was 2 weeks after chemo--right b-4 rads..man I was freaking!  I had never heard of calcifications (dumb..I know)...anyway..they were NOT cancer (after a sterotactic biopsy..which wasn't the best experience I've ever had..I'm a bleeder)...they determined that they were vascular calcs..

 Anyway..what I'm saying after rambling on too much is that I hope that they are just calcifications..which are totally normal. and common..and I think usually 95% benign..I'm hoping that for you!

Yay Tiff ..glad you are done! 

Suze..I like the wine too...!  One good thing about being TN..drinking wine doesn't seem to affect our cancers..good thing..

Titan

Oh..and Suze..here's some positive thoughts for your sis...

I really know what you guys are thinking when you see pictures of yourself b-4....I look at those pictures and I think..you poor girl..you really don't have a clue what is going to happen to you...

Maria_Malta

Yes, you look at those pictures and think "Mmm..the age of innocence"....

Babs37

Aahh....The age of innocence.....How I can relate to you guys on the picture thing.

1 year ago today, was when my breast cancer journey began. It was the day I went to see my family doctor for the lump I had just found in my right breast..... She didn't tell me on that day that she thought it was BC. I just knew by the way she looked at me that it was............... and it was.

Have a great day everyone.

rella40

Hi everyone,

just wanted to unload a min.  I started Xeloda the end of May, 7 days on 7 days off,  for six cycles.  I started cycle 3 on Mon.  I had forgotten to have my labs done, and so I went Mon morn a few hrs after I took my first dose.  Well, I got a call yesterday afternoon from my cancer center, ( I get my labs done here locally, then they fax them) and my counts have dropped to almost nothing.  So MO says to stop taking pills, wait a week then re-test blood.  I am soo upset.  If you haven't heard my story, here is the latest, I have had 4 previous chemo regimines, they have chased it from my breast to my clavicle, to my lungs, to my mediastinum, and now my neck, supraclavicle and a new small suspicious spot on my liver.  I had rads to my mediastinum in Feb and the RO wanted to do chemo at the same time, but MO (who I was just switched to in the fall-my MO transfered to a different dept.) insisted I have a "holiday" from chemo.  Soooo, while the rads worked their magic (it worked), the new spots showed up.  Can anyone tell me if they have been on xeloda, and if you were/are did you get a Nulasta shot before they started this?  I am usually on top of these things, but I was so shocked when they said "new spots", my mind was not on the immediate.  This week was my "on" week, and next week is my DH vacation, we are supposed to go north camping.  Now I am supposed to wait till tues. have blood done.  I don't know if I should go, I want to.  How will I have a good time when in the back of my mind I know the beast is running free?  I have been fighting this over nine years, most of it actively.  I am tired.  I don't want to give up yet.  I have fight left, but it's getting harder to stay positive right now.  I have been nothing but positive for so long, I guess the statement "depression is just a sign of being strong for too long" is where I am at.  Thanks fot listening.

Suze35

Rella - I'm so sorry you are struggling with the Xeloda right now.  Did your doctor suggest Neulasta shots from here on out?  I will be starting it myself in less than 2 weeks, probably for 4 months, so I don't have any real world advice.  I would post your questions on the Stage IV board - there are many women there who have taken Xeloda, and can also give you support for the battle you are waging, I know it has to be exhausting. 

As for your trip, I can totally empathize.  I had a mini-trip with my DH to NYC when I finished chemo, but I was so worried about the headaches/dizziness I was having I couldn't fully enjoy myself.  Unfortunately, I tend to let things fester.  On a different note, if it is just you and your DH in a beautiful setting, perhaps that will help settle your heart.  I wish I had better advice!

Hugs to you.

OBXK

Rella, sorry no advice to give, other than you always know what's right for you. I hope you can find a calm moment to listen. Wishing you well...

tracie23

inmate I am thinking of you.....

Titan

Hi tracie!  how are things going with you?

Rella..I had a dear friend that had ovarian cancer..stage 4 for 10 plus years...She helped me so much during my chemo...I was so afraid of taxol..she told me that she had had 100 treatments of taxol...anyway..she did go on trips with her DH...all during those 10 years...she said that she rested when she had to..otherwise she was out there having fun...

I dunno..it is so hard to say...I think that sometimes doing stuff is better than just staying at home...takes your mind of things.....My DH and I now realize that you have to live...there is always the concern about $$$.

At least we aren't like that cult that thought the world was going to end and sold their homes and spent all their $$$....yeah..our world may end sooner because of BC but it's not going to happen tomorrow...or even next month...

o2bhealthy

I am not triple negative but I saw this article and thought I would pass it on...

 http://www.sciencedaily.com/releases/2011/06/110627184000.htm

I was reluctant to post in on this forum because I am not TN and the first few paragraphs seemed to reiterate just how aggressive and difficult to treat TNBC can be but the last few paragraphs are worth the read.  Hopefully being able to determine the specific subtype of each persons TNBC will be the break through needed to make targeted treatment more successful and I truly hope that testing for these sub types will become readily available in the very near future. 

NavyMom

o2b...Thanks for posting this article.  And you are right, the last few paragraphs made it worth the read.  And feel free to come back anytime to visit us here in TN land.

Navy

tibet

Hi rella41

I also had bilateral mastectomy with silicon implants. Is ultra sound sensitive after mastectomy?

pat57

Hi all...I'm going on 3 yrs. since my dx. I had a lumpectomy on left breast in July 2008 followed by 4 doses of axoteer/cytoxon (sp?)...folowed by 37 rads. finished in Dec. 2008. Developed another lump under scare and had the tumor removed in May 2009. It was found to be a reaction from rads...but, it is still growing the surgery did not stop it. In July I went for my first colonostomy. One small pollup showed up as invasive colon cancer. So, had a colon rescection. There was no cancer found in the part of colon they took out. During a routine mamo in Dec. 2010...something showed up in my right breast. An ultrasound showed it to be fibrous? So, I didn't think much about it until.2 weeks ago...when my cancer Dr. mentioned how well I was doing considering I had triple negative stage 2 breast cancer and was approaching my 3rd yr.  Well...believe it or not..this was the first I had heard that term. I think I must had been in some sort of state of denial and did not hear this early on...except I knew I tested neg. for an oral drug.  I have 2 sisters that have had breast cancer and I knew both of them took some sort of pill for five yrs. after their surgerys and they both are doing great. One is a 26 yr. survivor and the other 6 yrs. So, I just assumed I'd be no different...so, I didn't ask many questions...just went along with the treatments...Being very positive and just wanting to feel "normal" again. I also have had some issues with my white blood cell count being low. So, at this point...I'm wondering if I should insist on a biopsy of both breast? I go for some blood work next week to see if I need to be refered to a rhumatologist for my luekopenia and lymphopenia. I know you all must think me crazy for not getting better informed early on...but, I am now very concerned and sorta in shock. I never talked much about my dx and avoided going on the internet. But, lately I've been obsessed with reading triple neg. stage 2 bc forums and finally decided to join one. So, here I am!  :-)

pat57

Does anyone know if a PET or CT scan will show all cancers in your body? I may elect to discuss having this done verses having 2 biopsys, Before my chemo I had a PET scan and it showed some spots on my lungs...but, my Dr. said it was nothing to worry about...BUT, it has been in the back of my mind that it could be cancer...as my father had lung cancer. I'm just wondering how Dr.s know if it's cancerous or not by looking at an image?

Where is Dr. Leonard McCoy when ya need him??? LOL!!

Suze35

Pat - welcome, though I am sorry you are here. You've had a rough road! In regards to a PET, it is a "nose to knees" scan that can detect lesions larger than about 8mm. It is a good diagnostic tool, but it can give false positives, so sometimes leads to further testing. They are my doctor's preference, I've had 2 and will have another sometime in August.



I hope your scans come back clear! The good news is 3 years out, your chance for recurrence is lower. As for the lung spots, many people have them from past pneumonia, infections, etc. Usually doctors will watch and rescan to make sure there is no change, as if they are gone after chemo, they would have considered them cancerous most likely.



Keep us posted!

Luah

Titan: Agree with you about living for today, while not writing off the future!! Today, I am re-booking my dream trip to the Galapagos Islands for next April, which we had to postpone this spring when my husband had surgery (and infection). I don't want to deplete my retirement funds, but nor do I want to miss out on travel while (relatively) young and healthy. Now if we can both just stay healthy for the next 9 months!!

o2b: Thanks for posting that. I'm so glad to hear they have identified sub-types, now I hope that they can get on in a hurry with treatment options. Does anyone know how long cancer centres keep your tumour sample? - because I'm thinking it might be useful to have sub-type testing at some point.

pat57: yes lung spots are not unusual, they just have to be watched to make sure they're nothing. Most doctors do not do routine scans like PETs unless you show symptoms (or are later stage). I'd be inclined to dig further on the "fibrous" U/S result (I tend to interrogate my docs... in a nice way of course - lol). Maybe a biopsy is warranted, maybe not.  Good luck.

Hope everyone has a great day today. Sun is shining here, it's lovely!

Teka

Kymn,

I just remembered being told by a GYN over 25 years ago to use a bath soap with a high PH level to help prevent boils.   I use Irish Spring bath soap with a PH level of (9.5).   Zest bath soap has a PH level of (10).   I was using Dove bath soap with a PH level of (7) during radiation treatments, and stupid me waited until now to switch back to Irish Spring.  You can find the PH level of all bath soaps on-line. 

Fighter_34

Hello ladies!!!

Checking in all is well. My first 3 month appt went great CA 25/27 test was 11, and the exchange surgery was accomplished. I will need one more revision surgery done later this fall. Still here and FIGHTING.

Hang in there ladies.

pat57

Suze...thanks for your reply. I hope everyone is feeling great today! I'm wondering if any of you who are at least 3 yrs. from dx still have days when you feel like you did about 3-4 days after a chemo treatment? I'm having problems feeling very weak and aching joints the last few days. Every once in a while I get like this and there doesn't seem to be a reason for it. I just want to feel "normal" again. Also, do y'all think maybe stress can bring these symptoms on?

inmate4232010

Hello all,

I had my first post-treatment scan, an MRI with an additional breast MRI that showed 12 spots of concern in the previously effected breast "lefty".  Yesterday I had an ultrasound followed by a biopsy.  Actually they biopsied 3 of the suspect spots and inserted clips.  I go in for a mammogram on Tuesday.  I'm not quite sure why a mammo after the biopsy.  I should get the results of the biopsy tomorrow.  I hope that they are just calcifications, but the spots were quite large and I'm pretty sure I heard the Dr say that they did have blood flow, which I believe is an indicator of cancer.  Has anyone else experienced this before right after treatment?  I finished rads on March 4th and had my annual mammo the end of April which came out clear.

Thanks everyone for all the thoughts and prayers.  I will send an update when I get the results back. 

TifJ

Good afternoon! I had a very emotional 6 month follow up appt with my onc this morning. He was dx with colon cancer in Dec. and has had a recurrence. He has had surgery again, but his own doctors are saying no chemo. We both had a good cry as we feel we are experiencing the "every little ache and pain syndrome". I hate that he is going through this as well, but he certainly understands my fears. He says I am doing well and will let me know about my blood work (tumor markers and liver enzymes etc...) as soon as it comes back. He held my hand through most of the appt and hugged me at the end. I'm not sure if it was for my benefit or his.

I came out of his office with tears in my eyes and my husband looked at me and I saw instant panic in his eyes. It took me a few minutes to convince him I was alright!!

Sorry for the rambling, but only you ladies understand how this feels!

Teka

inmate4232010,

I hope everything turns out OK.

Fighter_34

inmate4232010, I get your name now your dx date. Sending a hug and well thoughts your way.

TifJ: it seems like since I found out I had cancer all I hear is cancer now. I am so sorry about your dr.

I have a question what is the normal range for the tumor marker test (CA 25/27)?? Does this give a signal that maybe a relapse is getting ready to happen??

Fighter_34

Sorry ladies I on the metaformin trial as well. I don't actually start until later this summer. I feel very blessed to have this opportunity.