Calling all TNs

not sure if I should jump in here or not.  

Got my results today from my pet too.  Doc says the lung nodule is almost definitely scar tissue and NOT lung mets. She said it is very common on the rads side as where it is located is a protruding part of the left lung.  Happy for me (selfish brat) but my heart is broken.

OBXK -- I am praying for you that you get the meds that will kick this s**t to the curb.  You have always been there for me too whenever I come on here with an issue and you are such a supportive sister in this journey.  Be strong and fight

Maggie

Inmate, Hope, OBXK and every one of us needing big hugs of love and support...

All the BC warrior sisters are clasping hands and encircling you tonight, and every day and night. 

Stay strong ~ Shar 

After I typed this, I remembered that scene (I guess I actually stole it!) in the movie Practical Magic, where Sandra Bullock's character recruits the town's women to clasp hands in a circle around Nicole Kidman's character, in order to exorcise the demon inhabiting her. Once done, they sweep the demon-dust away with brooms. Black magic aside, what a dramatic way to represent kicking this beast to the curb and beyond, and to show the strength and devotion of the BCO sisterhood. We're all in this, together.

Mags!!!! Enjoy your good news!

Thanks for the love.

Titan - I know how you feel.  I don't think I can take much more of this crap cancer when it is affecting all of our beloved friends.   All they want to do is live healthily and happy, no riches, just healthy and happy.  Is that too much to ask.  I'm not even sure prayers are helping anymore or if they ever did in the first place.  Why can't it just go away and leave us in peace now.  We have had the treatment and now have had enough of it.  Cancer sux big time today.       

(((OBXK))) Karen - I am so, so sorry.  I do know exactly how you feel, and I must encourage you to let your husband in, let him support you.  You need to be able to release your feelings and you can't easily do that if you've not told him.  There are lots of treatment options - I encourage you to check out the stage IV forums and introduce yourself.  You'll find lots of women who have been down this road before you and they will be able to offer plenty of wisdom based on experience.  Sending you courage, hope and love.

Hey Gang,
Well darn...........I am so sorry for the losses I have read about.   All of them, but I did have the pleasure of talking with Suze35 and she helped me out so much in the beginning.   I had to leave the forum because I was trying to stay so positive and even with the good post at the beginning you all know it is the bad stuff that sticks out.   I had several weeks of therapy due to lymphedema and back issues.   I went for 6 weeks got released it was no time I was back there again for another 6 weeks.  I have had so MANY emotions and just learning how to deal with them and all the remarks that people make, losing people I thought were friends both in real life and online after my diagnoses and treatment.....hurts but what do you do.  I guess some people were just not suppose to be in my life after all.   So, I decided that maybe I could come back and darn I get on here only to learn we lost several.   I have never put my head in the sand about things, probably the opposite but I think I found peace and then with BC awareness month being here new things are coming around and I read an article on survival being 75% for us versus other BC and now I am fighting to not go back to square one.   I know I could die from something else but the cancer just sticks out.  The doctors have ask me if I am ready to have my port out and honestly I am not.   For comfort yes, security in knowing I won't have to have it put back in yes.....might be silly but you know they say if you are prepared for something it won't happen.......:).  I know that is not the truth but I have mixed emotions because as much as I am trying to stay positive (I am not real good at it) I just have an eerry feeling that I am not done with this yet.   I hope it is my anxiety talking but I have some issues popping up here and there and it is really scaring me.  When did you all have your ports removed?  How long did you keep it before removing it?  How do you all deal with the deaths of others without letting it take over your thoughts?

I really wish I could come here more often but my emotions just won't allow me to do so.

God Bless!!!

Hi all

Just to catch up with a few gals from 2009 withTN, I am still here after 3 years post treatment. Been a wild ride and I am still scared. Hugs to all.

Hi Lovelyface,

I can explain the process of having your tumor tested/retested.

When surgical specimens (biopsies, lumpectomies, mastectomies) come into the Histology/Pathology Lab, they are inspected and then dissected by the pathologist, while he/she describes all the features of the tissue specimen (size, color, location of tumor, margins, etc.). The pathologist cuts small pieces of the tissue from many areas to get a good representation of all the tissue submitted. Suspect areas get many more samples. The tissue samples are placed in plastic cases, "cassettes", and each cassette is numbered. This dictation is recorded and sent to medical transcription to be typed up. This is found in the "gross description" of your pathology report. You will see the description of the specimen, the number of cassettes, and other info the pathologist deems important for your case.

The techs (Me!) put the cassettes into a tissue processor, which has a series of chemicals that preserves and firms the tissue samples. Once the process is completed, the cassettes are opened, the tissue specimens are oriented in the cassette and encased in hot wax. The cassettes/tissue samples are now called "blocks". Once cold and firm, the blocks are placed in a microtome, a machine with a very, very sharp blade that allows the histotech to cut "ribbons" of wax/tissue that are 2-4 micrometers. The best way for me to explain this is...as a kid, remember putting Elmers white glue on your hand, and then peeling it off when dry? - "ewww, skin!"- well, that is how thin the ribbons are. The ribbon is separated into "sections" (tissue/wax) and placed on glass slides. After drying, the slides go through different stain protocols, determined by the pathologist. These stains color the cell's different components, allowing the pathologist to see the normal and abnormal cells. After staining, the glass slides are "coverslipped" with very thin sections of glass. This protects the tissue, and allows for viewing and then storage of slides. After proper labeling, the slides are sent to the pathologist. He looks at all the slides through the microscope, now analyzing at the cellular level, and dictates his findings. This dictation is found in the "microscopic description" of your pathology report. He may request "special stains", "immunos" (immunohistochemistry) such as ER & PR, or whatever he needs to get a thorough diagnosis. During the "cutting" of slides, extras are made but not stained, and kept in reserve for any special treatments requested by the pathologist. These would be the "slices" that you wondered about. Very rarely are tissue samples sent to other labs. Most likely your oncologist said "slides". Upon request (and lots of paperwork), the unstained "blanks", along with the stained slides, would be sent for further analysis by another lab/pathologist. Certain tests, such as Her2/neu, are only done by bigger or more specialized labs. Of course, that adds to the dreaded wait time.

As an aside, when I had my US-guided needle core biopsies, I knew what the whole process would be...the time it would take from biopsy to gross to micro to special stains to final report...and it still was the longest week of my life!!! Arrghhhh!!! 

The surgical tissue specimens are kept in formalin (formaldehyde mixture) in lab storage for a long time, in case more tissue needs to be analyzed. The slides and blocks are stored for many, many years, so that they can always be reviewed, and more slides cut, if needed. 

 I'm sure that is more info than you ever wanted!  (Of course, if anyone needs more, just ask!)

Gawwd, I am such a Histology wonk!!! Obviously, I still miss it. (MS sent me home in 2003).

Nite All ~ Shar, HT(ASCP) 

 Stained slide = Nature's artwork!

OBXK....big hugs......so angry ...the tears are flowing....I hate this thing....but, you know we are here for you. Saddens me so much this cancer thing. Treatment options are there and we are holding you so you have the strength to go through them and kick this to the curb. I know you will get a plan in place and please let us know how you are doing.

Spica 16: I really appreciate your explanation. It is so clear and easy to understand.

I wish the oncologists info were as clear but obviously so many variables fall into play with that. I remember going to my first oncology appointment with my husband and dear friend. The onc gave us charts on treatment options, risk of reoccurrence etc and discussed her recommendations. When I got a second opinion the info was mostly similar but different regarding odds and a slight difference regarding treatment. I was so overwhelmed and our daughter was getting married in a month that I went with the closer hospital and although there is no going back, it was not my best choice. Getting information in those first few weeks is so overwhelming as more info keeps coming with path reports and decisions get made using the best judgement you can though you are in shock and stunned and overwhelmed.

One thing it does make me realize is one has to do the research, take some time to decide and talk to as many people as you can, survivors, those going through treatment, researchers, friends, your PCP and then use your most intelligent friends and family to help you go forward. I wish I could say this is a good model to use but I doubt it is humanly possible.The emotional impact made it hard to think clearly.

8:00 am - Oh Boy! Dog food! My favourite!
9:30 am - Oh Boy! A car ride! My favourite!
9:40 am - Oh Boy! A walk! My favourite!
10:30 am - Oh Boy! A car ride! My favourite!
11:30 am - Oh Boy! Dog food! My favourite!
12:00 noon - Oh Boy! The kids! My favourite!
1:00 pm - Oh Boy! The yard! My favourite!
4:00 pm - Oh Boy! The kids! My favourite!
5:00 pm - Oh Boy! Dog food! My favourite!
5:30 pm - Oh Boy! Mom! My favourite!
6:00 pm - Oh Boy! Playing ball! My favourite!
6:30 pm - Oh Boy! Sleeping in master's bed! My favourite!

EXCERPTS FROM THE CAT'S DAILY DIARY:

Day 283 Of My Captivity.
My captors continue to taunt me with bizarre little dangling objects. They dine lavishly on fresh meat, while I am forced to eat dry cereal. The only thing
that keeps me going is the hope of escape, and the mild satisfaction I get from ruining the occasional piece of furniture.

Tomorrow I may eat another houseplant. Today my attempt to kill my captors by weaving around their feet while they were walking almost succeeded; must try this
at the top of the stairs. In an attempt to disgust and repulse these vile oppressors, I once again induced myself to vomit on their favorite chair; must try
this on their bed. Decapitated a mouse and brought them the headless body, in attempt to make them aware of what I am capable of, and to try to strike fear
into their hearts. They only cooed and condescended about what a good little cat I was. Hmmm, not working according to plan.

There was some sort of gathering of their accomplices. I was placed in solitary throughout the event. However, I could hear the noise and smell the food. More
importantly I overheard that my confinement was due to MY power of "allergies." Must learn what this is and how to use it to my advantage. I am convinced the
other captives are flunkies and maybe snitches. The dog is routinely released and seems more than happy to return. He is obviously a half-wit. The bird on the
other hand has got to be an informant, and speaks with them regularly. I am certain he reports my every move. Due to his current placement in the metal room,
his safety is assured. But I can wait, it is only a matter of time...

Hi desertmama, please don't blame yourself for not checking - it doesn't always work like that.  My lump appeared on a tuesday evening - it was not there the day before.  I had a mammo 2 months earlier.

Are you on facebook - would you like to join our site on there?

I am the only person that i know of with TN in this area - my friend passed on with it the day I was diagnosed.

 I am also a facebook charity administrator for our local cancer care centre (40 miles away). So far I know of 4 people (3 women and 1 man) who found their cancers by being made aware because of what we do.  I hated when I was asked to be involved.

You are not irresponsible or neglectful, you are a kind caring mum.

You have my admiration for coping so well consedering where you live.

Hugs to you

B xx 

I agree it still hurts so much and people can be so ignorant in what they say.  One of the women up our local pub asked what diet I had been on (and she knew I had cancer) - her face when I said - Chemo. 

I'm new to this board. A little about me:

I am 44 years old. Mom had BC at age 49, so I have been very proactive about my screenings. Had a baseline mammo and US at age 30 and due to dense breast tissue, elective US from the age of 40.  Mammo on July 2 was normal but US detected small tumor. Immediate biopsy and I got the pathology results the next day (they rushed it due to holiday weekend): IDC, stage 1, grade 3, ER+(75%), PR-, HER2 unknown. I am happily married and the mom of a 17 year old daughter and a 15 year old son and the diagnosis completely devastated me. I requested genetic testing and spent two weeks crying over my diagnosis. Results came back positive for BRCA2. At that point, I decided it was time to put on my big girl panties and DEAL! I transferred my care from our community hospital to Stanford and met with a wonderful team of doctors. I had my lumpectomy on 9/5 and pathology came back IDC 8mm, grade 3, ER/PR-, HER2-, 0/1 nodes. I was shocked to have a completely different hormone receptor status from my biopsy and have been doing all the research I can about being triple negative. I know our prognosis is poorer than other BC, but I'm doing my best to stay positive and make the right decisions so I can be around to see my kids grow. I will be starting TC x 4 on 10/24 and planning to use Penguin cold caps in hopes of saving my hair. Now that I'm officially TN, I'm reconsidering my surgery and wondering if I should have the BMX. Any thoughts? Due to my BRCA status, I'm also planning on having an oopherectomy once my active treatment for the BC is complete. Definitely not looking forward to going into immediate menopause.

Has anyone read the studies regarding CBD compound in marijuana having possible positive results in treating TN? Here is the link in SF Chronicle:

http://www.sfgate.com/default/article/Pot-compound-seen-as-tool-against-cancer-3875562.php

I have never been a smoker (and I''m pretty conservative), so I'm not sure I can get myself to smoke medical marijuana (even if my MO would approve it!), but I was hoping to maybe find something in pill or extract form without the psychotropic effects? Any advice or experience? 

I would also like to join the TN closed FB page if possible. How could I get in touch with the admin?

Another note: Mom was tested for the BRCA mutation two weeks ago and her result came back negative! Another shocker to learn that it came from my dad, who passed away unexpectedly last year. This BC diagnosis sure has been a roller coaster ride! I'm thankful to have a forum like this with ladies who can relate to what I'm going through and offer me some sound advice and a smile and hug when needed. 

I see my MO next Wed. Thanks for all the love and support!



My PCP asked what she could do? I said keep the Ativan coming

I'm at work, but wanted to post a link for English Rose. I thought you would be interested to know that Patricia, who writes a blog about triple negative, is weakly PR+ - read what she has to say about it in this essay from BCO:

http://community.breastcancer.org/blog/you-can-survive-triple-negative/

If memory serves me, she may discuss it more on her blog. She visits BCO sometimes, too - she might have more information about this particular variant.