Calling all TNs

Luvmydobies

Ally, have you heard any other results yet? Thought you were supposed to get biopsy results Friday. If I'm wrong, I apologize! Let us know.

Also hope to hear from Arlene soon!

Meadow

(((((((Arlene)))))))

Lisaj514

http://www.cancercare.org/connect_workshops/443-update_triple_negative_breast_cancer_2015-03-03

This webinar is tues 1:30-2:30 EST. Supposedly you can register and listen by phone. I believe we will also be able to listen to a "taped" version of it afterward. Not a very convenient time for me but hopefully some of us can listen and share

Cocker_Spaniel

Arlene thinking of you and hoping surgery wasn't too traumatic for you.  Be kind to yourself and get plenty of rest and hopefully you will feel better soon.

Shari thinking of you today with all of your test results and hoping all goes well.  I remember when I was first diagnosed I felt so alone.  My hubby was positive and felt I would be "cured" but I didn't want to worry him and my daughters because I didn't want to see the fear in their eyes,  consequently I have never felt so alone as then. But we are all here with a shoulder to cry on and to encourage you to express your fears.   We all know what you are going through and are with you all the way, deep in your pocket.  Sending big warm hugs to you and the hope that all is good news today.         

natL12

Meadow...not offended by you at all! Just by people who have never been through any illness telling me how to think. Nat

Luvmydobies

Thinking of you Shari!

SA8PG

Sending love to all the TN sisters out there. Shari praying for you as well.

I just got out of the hospital for a second time in a month so I appologize I have not been on the thread. My right expander got infected & they removed it after 8 long days of iv antibiotics in the hospital. And then just Monday my left expander got the same infection and they removed that one too. Now I am flat on both sides.

Standing with you all.

Allydp

Shari - what an awesome picture! I've only been on a snowmobile once, but it was a lot of fun. My heart is very heavy reading your latest update. Please don't ever feel the need to be positive here if you're not, in fact, feeling positive. I think there is a period of sadness and anger that is absolutely necessary to come to terms with any new diagnoses. You have to feel it and let it out...and we are all here to listen and be there for you during any stage...good or bad. Forgive me if I missed this, but have you actually sat down with your onc yet to discuss all of your results and discuss treatment? I hope you're able to get some concrete information soon. You are in my daily thoughts and prayers. One day at a time right now...heck, one minute at a time if need be. You are stronger than you know and will handle anything that comes your way.

Luvmydobies - So happy to hear your ultrasound was clear. I hope you're able to get into your GI quickly and get to the bottom of this pain. I totally understand how tough it is to have a nagging pain with no answers.

Thanks everyone for the kind words. I'm trying to stay positive, but it's hard. I read my MRI results on the patient portal and the spine MRI says the hemangiomas are "atypical and metastatic disease cannot be excluded." I have a similar area on my sternum that was discovered back when initially dx that they have told me the same - told me the same thing - apparently benign, but mets cannot be excluded. As I said before, this bone pain and inconclusive scans have been an ongoing issue and I've basically had it. I'm getting a second opinion with a new onc. The new hospital wants to wait until my pathology is in from surgery on the 11th, so my appointment won't be until some time after that. I don't know what needs to happen...a biopsy, another PET, whatever...but someone needs to give me a 1000% definitive answer. Mets or not. I cannot live like this, and I'm tired of my current team treating my fears surrounding this issue as anxiety. I don't know anyone who would accept this scenario and move on! (Okay, rant over.) As far as the biopsies, I was in such a haze when my BS said surgery that I didn't think to ask any questions. Now I'm wondering how this will effect my recon. Should I have my PS there to remove the implant so they can properly remove this mass? Should my PS be there anyway because the mass is so close to the implant? The other mass (that they said was benign) feels like it's getting bigger each week. I wish they'd just remove that one while they're in there. Sorry for the debbie downer post today. I'm grateful for the good news so far and need to just focus on that right now.

Allydp

Quick question for you ladies. My BS's office just sent me the surgery consent form and it's for an "excisional biopsy." Does this mean they're only taking a larger biopsy and not removing the entire thing? So if it's cancer they'll have to go back in? Can I request to have the entire thing removed now or is that not the typical procedure?

njprn

Hi all, I don't post often but check in once in awhile, and like others am so sorry to see new members.

 Shari, I am sorry you are dealing with this again and will continue to hope for it being local only. When diagnosed (Jan 2012) I joined a clinical trial as I wanted a platinum drug and in my area (New England) I could only get it that way. I took Cisplatin with Taxol (a trial out of Vanderbilt) but research is good for TNs with platinum drugs esp if basal like in pathology.Many others have had good results with Carboplatin. I see you are in Canada and not sure how to enroll but you may want to research what trials you may be eligible for. Some of the best research is out of Canada. Best to you and you will remain in my thoughts.

Ally, You have so much going on. Maybe it would help to write a list of all your questions and email your BS and cc your PS, so all are in the loop and you won't have to duplicate conversations and forget who said what etc, or endure extra procedures. Do you have a patient navigator? If not maybe the nurse at the BS office would find out the info you need to help reduce some stress. Just a thought.

bchusband, keep that research going and best to you your wife and the baby!!

to all of us may we enjoy today......xo Nance

Curlyq1974

Ally,

Prior to my cancer, I had an excisional biopsy.  They went in and removed the entire mass and yes, if it was cancer, they would have needed to go in an remove additional tissue.  Yes, I would request that they take it all now and go for clear margins if possible.  I was pretty specific with my surgeon.  My second lump was the cancer and mastectomy, but again, I asked her with the node biopsy, if in question take more not less.  She actually had to reopen my right breast to take more nodes when it came back that I had a positive one.  I was so grateful that she did that.  I would just rather not have another surgery.  I know it was a pain in the neck for her to scrub back in and reopen what she had just finished, but the patient care aspect I felt was HUGE!!!  Don't be afraid to ask. 

 

Meadow

I totally understandNat!

KSteve

Allydp - Just a quick note regarding your PS and your biopsy.  My PS has always said that if I need a biopsy, he would be the one to do it.  Mainly so he can make sure to do the right thing when it comes to my reconstruction and the implants.  They are very skilled surgeons, so I would contact him/her (if you haven't already) to ask what they think.  I can't imagine all of the unknowns you're dealing with right now.  You need answers and I hope you will get them soon (and that they're good answers!!).   I remember when you first logged onto bc.org and I was amazed at how you handled everything.  Praying for "good" answers for you!

Shari - You never need to apologize for being up or down with your attitude.  We can all appreciate that sometimes our families just don't get it, as much as they think they do.  Not their fault, but nobody understands like those of us who have fought the fight like you.  Rant on whenever you feel the need.  Praying for you too.

Luvmydobies - My daughter did end up getting a doberman puppy.  We went to visit her a couple weeks ago so we got to meet my newest granddog!  His name is Zen and he is now five months old.  So precious.  And her 5-year old 8-lb long haired chihuaha is the boss of him.  They are so funny together.  As much as her nose is out of joint about not being the only dog in the house anymore, they catch them snuggling up on the couch together pretty often now.  Anyway, I see why you love the breed.  Zen is just a little lover

Thinking of everyone even though I don't post often.  Fingers crossed for everyone waiting for news.

Kathy
 

Meadow

BanR, I re read your post about your cardiac diagnosis, and your doc says it is not related to the chemo. I am not medical, and your doctor is the expert, but isnt it a surprise he doesnt think it is a post chemo condition? I would have thought so just by the timing of it. How are you feeling?

SA8, I am so so sorry you have had infections and they caused a set back in your recon. That just plain stinks. (((SA8)))

Ally, You are the strongest little lady I have ever known. I know you are struggling. Just know we are all with you and sending you all the energy possible to fight. God please heal this special sweet sister and let her get on with just being Ally. Amen

Cocker_Spaniel

Ally an excisional biopsy is where they take the whole lesion out and they should make sure they give you  a wide margin so you don't have to have re excision otherwise histology will come back with insufficient margin and then you will have to have it done again.  I would ask them to make sure they give you an excellent margin but they should do that anyway.

 

Luvmydobies

Ally I echo what Meadow said above!! I'm praying for you dear! Hang in there!

Kathy,I'm so excited hearing about Zen!!! Love me some Doberman news!! Haha! What color is he? You must post a pic please!!!

My mom got a good report from her doctor. Turns out she has a bacterial gallbladder infection. All other tests were normal! Thank God!

As for me, I saw my GI today and he wants to do a CT scan and it's scheduled for Friday! I've never had one and I'm scared of drinking the contrast! I'm nervous it's gonna make me sick and/or give me diarrhea!

Shari, check on when you can. You too Arlene!

Cocker_Spaniel

LUV do you have to have the one where you have to have a special drink 1½ hrs before the test then an hour before etc.  If so it never made me sick but it did go through me quite fast.  Even so I still had time to drive 1½ hrs to get there before it worked and I only had to go to the toilet twice.  

Luvmydobies

Yes Cocker I have to drink something and they are going to inject dye. They just told me to be there an hour before. They said I would just drink one thing though.Ugh. I'm taking a bucket and plastic bag and TP and wipes in case I have to poop while the hubby is driving. I can't squat, so no pulling over on the side of the road! I just hope I don't have to poop while I'm in the machine!!Sorry for TMI but I know my IBS will be in high gear because I'm so nervous they will find something!

I forgot to ask about how long the actual scan takes? Like how long will I be in that tube?

slv58

Hi everyone, I'm going to make this quick- I'm exhausted! I woke up feeling very positive and in a great mood. My day was very good! Had my class on diep and mastectomy. Saw my PS who says she feels quite confident of a good result- she is one of the best in Canada and sooo nice. I feel honoured to have her on my team. Then saw my BS who also felt confident of good results. She said because of where the recurrence is- there wasn't a lot of breast tissue left so it has invaded a bit of muscle. She will excise as much as possible to obtain clean margins. I will loose my nipple because of the amount of breast tissue it contains. If clean margins aren't obtained then I would have rads, but my BS feels that won't be necessary. I hope. I asked if I could get MRI checks and she said she would consider it. Recovery will be long but I can do it! Surgery is next week, maybe Tuesday!

SA8, I'm so sorry your dealing with infections, at least you can start healing now. Take it easy and be kind to yourself. I hope you can rest comfortably.

Cocker, thank you hon, feeling your support-as always!

Nat, I so agree with you about people telling you how to feel when they have never experienced anything like us.

Luv, I had a ct scan and found drinking the contrast was no problem. Didn't have a problem with any SE either. I'm happy you are having this done so quickly so you can relax! I'm also so happy about your Mom.

Ally, I hope your doing well. I don't know much about excisional biopsy and don't quite understand the difference between that and LX? I've only had core biopsies. I pray you get answers quickly, it's so unfair waiting this long, I'm thinking of you often and sending a gentle supportive hug.

Arlene I'm thinking of you and hope your resting comfortably.

Sorry if I've missed anyone, I soooo appreciate everyone's love and support. With my TN family I will prevail!

I'm off to bed zzzzzzzz!

Shari

Tobycc

Shari, glad for the news! Ally, I have HUGE overalls on today: in my pocket you are! And others facing tests

Kath

Question for those who have had pet scan: mine is Thursday: said no sugar Wednesday: is that ALL carbs, like oatmeal too?

Luvmydobies

Shari, I'm so relieved you had a good day and your surgeon's feel confident!!! This is good news! Sleep well! XO

Luvmydobies

Toby, I haven't had a PET so I can't give any advice on that. BUT I will be in your pocket Thursday!! I'll say prayers too! I know it will all be good though!

Sabel

Shari, you have been a big help to me during the last couple of years. I didn't post, but I did lurk on the sidelines.

I'm sorry to hear that you need more surgery. I hope your doctors are correct in minimizing your risk. I'll be cheering for you!!!

Cocker_Spaniel

Toby a PET scan is a Positron Emission Tomography (what a name).  You won't be able to wear any jewelry or anything with metal fasteners.  Generally there is no food or liquids except water 4-6 hrs before scan and no exercise either.  You will have an IV and will rest for 60 minutes.  In NZ we have the IV and then you can go shopping for an hour or so.  Funny what different countries do. 
Then you have to pass urine and lie still for the scan which takes 15-35 minutes. A nurse will check your blood sugar before the scan hence no sugar.  After that you can go home but you must drink plenty of water.  Hope this helps.

eileenpg

Toby=For my Pet scan in Nov. I could not eat or drink anything after midnight the night before. They took my blood sugar before they started anything. Then I was injected with a solution in a vein in my arm., Maybe 30cc. After that I was placed in a pretty dark room for 1 hour and told to try and sleep. No reading a book. Just sit quiet. Then pet scan. Took about 1 hour moving in and out of a tube. Then all done. I asked my tech at the end how my test look. He told me "off the record everything looks clean" He then took me in th back and showed me my results. I was so glad I did not have to wait a week for my MO to give me the results. Good luck

Thinking of Shari,Luv,and Ally. Im with you.

Tobycc

Thanks to all! Eileen, closed tube? AARRGGHH: ah, its nothing compared to the stuff us girls have seen!

Meadow

Toby I always bring a washcloth in my purse to scans, I put it over my eyes. If I open my eyes in the tube I still cannot see, and I can toleratethe tube this way. Sometimes there isnt a real washcloth in the area, and a paper towel works but not as well.

Does anyone know the name of the thread on here that has the names of members who have passed away? I have looked for it but cannot find it.

Cocker_Spaniel

Meadow I believe it's called the Angel Thread

Eileen what a difference in the way scans are carried out.  I think yours may be more helpful to Toby in your country.

Meadow

thanks Cocker

anotherNYCGirl

Shari - It sounds like you are in very good hands! I am so glad that your drs are so knowledgable and confident! (and I love the photo with the snowmobile! )

Luv, - Hope your Mom's infection clears up quickly! Now it's your turn to get answers to what's making your tummy hurt! Dont worry about the scan and the stuff to drink. Just go to the bathroom as soon as the test is done. You should be fine!

Ally, -If your bs and ps could work together it would be ideal, however, the main thing is to get the area in question out! Have the scans, tests, etc, - then you can breath a sigh of relief and get on with your life! I know it sounds oversimplified, but keep your chin up and believe that you WILL get through this!!

SA8PG, - Infections are no fun, but i'm glad that the antibiotics did the trick. I, too, have had an infection that put me back in the hosp for another surgery and antibiotics, and then (unrelated) had to go back to have implant removed another time.

Sometimes it feels like we keep getting knocked down just as we are getting ahead. Having all of you here makes getting back up a lot easier! I so appreciate your support when ever I have needed it.

I havent included everyone's name, but I do include everyone in my thoughts and BE WELL wishes.

Hugs from nyc