Calling all TNs
Comments
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OBXK-I am saddened to hear your news. Sending you hugs.
LBNC-Were you able to get your mom into the facebook group? Try sending Bernie a message and she can get you in.
Stupidboob-I do get what you are saying. Yes, it breaks our hearts when we lose a sister, but I am so glad I have gotten to know these beautiful, strong women.
Sugar-What a great photo of you at the race! You look like you came right out of a salon!
LuvRVing-gorgeous photos! You do look so much like your mom!
23 years ago today, about 8 am my mom passed away from ovarian cancer. I have now lived longer without my mom than with my mom. I still think of her everyday. Mostly about how wonderful she was, in her energetic goofy way! SOmetimes I get sad thinking of everything she has missed. She would be 79 if she were still alive today.
Hugs to all going through rough times and to those that have gotten good news (mags!) and to everyone else!
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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!0 -
OBXK: What bloody awful news. I'm so sorry. You sound like a strong and courageous woman. I hope that you find a treatment plan that is effective. I'm thinking of you.
Inspired and Lovelyface: Thank you so much for your comments. Really helpful indeed. I have a long list of questions for the meeting with my oncologist this evening.
Spica: Thanks for the description of the testing process. Sometimes you just need a clear explanation in simple English!
I hunted high and low yesterday for more information on ER-/PR+ cancer but there's just not alot out there. Some articles argued that it doesn't exist and, unless I've understood things wrong, seemed to say that you can't really be PR+ without having some estrogen action going on (something about progesterone receptivity is dependent on an active ER pathway?). Others stated that the outcomes of people with ER-/PR+ are distincltly different from ER/PR+, ER+/PR- and ER/PR- (somewhere in the middle) and therefore it is a distinct but very uncommon subtype. Women who test ER-/PR+ tend to be quite young (I am 37) and there tends to be lobular cancer present (I learned that mine was a mixture of IDC/ILC). There were alot of articles talking about the different staining techniques and why some are more accurate than others in detecting ER receptors, most of which were well beyond my intellectual capacity. Ultimately of course the question that I need to be asking is will hormonal therapy be of benefit to me and will the benefits outweigh the risks/potential side effects? On the sheet that I saw, my progesterone receptor status was listed as 3 out of 4 but I'm not sure exactly what that means (75%?) so I'll need to clarify that too. In any event, I'm going to ask them for further testing to confirm the results.
I'll let you know what I learn for anyone who's interested.
Warm wishes to you all,
Benedicta
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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.
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Bak94~yes, Bernie sent me a message and I sent a friend request on Facebook for my mom. Hopefully she (my mom) logs on today.
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EXCERPTS FROM THE DOG'S DAILY DIARY
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...0 -
Awww frikken cancer- Karen I am so sorry, so angry to hear your news! Hugs, courage, and strength to you xoxo
Lory, I agree with Luv. Perhaps your results aren't contradictory, but changed as more info was gathered. My surgeon staged me as 3a according to biopsy results and my oncologist downgraded that to 2b after surgery pathology results.
Titan, I know what you mean about Pink October. I kinda hate it! I live in a place where the word cancer is taboo, and breasts even moreso. Most people here will not talk about it. The only breast cancer support group for the whole city has about 15 members, and often only 3 show up for the monthly meeting. I'm not hiding my cancer, and I feel like somehow I have become the posterchild for breast cancer this month. Have received a bunch of asinine media requests (not anything intelligent that I feel like answering), several more for pink-clad expat lady coffee "awareness" mornings (groan), and people I barely know are calling me, approaching me and asking personal questions.
The thing is, I found my cancer in a self exam, but I had not done one for a few months, and had not had a mammogram for 3 years since I moved to the Middle East- how easy it would have been to just check regularly. I HATE explaining this. I feel so stupid, so irresponsible, and so heartbroken that I was such an idiot! I spent so much time and effort finding excellent medical care for my children when we moved here, and never gave a thought to my own, and how neglecting it would hurt my family so deeply. Yes, I want to tell other women so they won't make the same mistake, in theory-- but in reality, I don't want to say anything. It hurts too much.
And it's not like most of my waking moments aren't already consumed by something to do with cancer already (my thoughts, my body, chemo side effects, my great big bald head startling me every time I glance in a mirror). Do I really want to be surrounded by it's great big pink presence every where else? Well meaning friends waving pink shit all over the place in solidarity- sigh- it bums me out.
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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.
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Karen......big heavy sigh. I'm so vey sorry to hear you have joined the group. sending lots of love your way!
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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.
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OBXK - well shit. When I read your post, that's what came to mind. We TNs will just hold you closer and love you harder to help you kick cancer's ass. (((karen)))
To all the walkers and runners - so very proud of you! Sugar, thank you for honoring the angels.
Luv - I agree with whoever wrote that you look younger with each photo you post. You're a beautiful woman and quite an inspiration for all of us. I hope the trial is making a difference. Keep us posted.
Inmate - so good to see a post from you and to know that rads are done! Whats next for you? Have the time of your life, girl - you've earned it! Sending good thoughts to strengthen you and to help you heal...
To all the other special TN ladies - I'm so thankful for each of you as we all take this journey together. Love and good vibes to all!
I HATE CANCER!
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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
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OBYX, sending love and stength your way. I hate this cancer.....
TLYM, welcome to our TN thread. Wishing you the best as you start the treatment journey. You asked about medical marijuana. Your Onc will prescribe anti-emetics(anti-nausea) meds before you start your chemo. These drugs work very well, especially if you take them as directed BEFORE the nausea has a chance to set in. You also mentioned oopherectomy and instant menopause....Chemo will cause you to go into menopause, too. The closer you are to 50 the more likely you will stay in menopause. But some women will experience "chemopause" and their periods will return when they are finished with chemo. As far as Lumpectomy vs mastectomy....Statistics say that both surgeries, along with appropriate treatments, have the same results for surviving. What you chose to do is a very personal decision. You need to do what feels right for YOU. Hope this helps.
Good to see you post, Inmate. Think about you everyday.
CS, thanks for asking about my son. I am going to see him and his little family in a few weeks. His squadron is preparing for deployment. He will be leaving sometime in the end of November.
Group hug to all.
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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.
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TLYM - welcome to the TN thread. Sounds like you've got a good treatment plan underway and it's good it was caught so early. We're here for you so you don't need to go through this alone.
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I'm still not too old to look................................. at the ocean
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Nope. Don't see nooo ocean...
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I have stared for quite a while and there is no damn ocean in that pic...cocker you are trying to decieve us all...that is however a very fine specimin of the male species and one spectacular arse!
Maggie
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Mags why don't my old fellar have an arse like that lol
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Could he turn around please?
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CS - love the ocean! ;-)
CANCER SUCKS - HUGS
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Hi ladies, I just want to check in with you all. Today is my 1 year cancerversary. I'm scheduled for a CT scan next month but right now things look great! You all have been an amazing support group!
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Titan you took the words out of my mouth!!!
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phgraham, woot woot on your 1 yr cancerversary! Mine was last month
This is the best support group ever! 0 -
TLYM.....welcome to the group. You will find ll he love and support you need wih these ladies riht here. They are truly amazing in every way. I can speak to your green questions. Is medial marijuana legal in your state? You can find a holistic doctor that will give you a prescription based on his or her individual consultation or you can take a copy of your last PET scan in and speed the process up and perhaps save a bit of money. I chose not to have he discussion with my oncologist, (for no good reason really) although I may let him know now hat I have progressed so much. What's he gonna do, yell at me? It does help me wih anxiey, pain, appetite and general overall well being. I don' smoke i anymor since my lung mets. Makes me cough too much. You can purchase a vaporizor that will allow you to smoke just he vapors wiht no coughing. Thya can be kind of spendy. Mostly I eat my medicine. ginger snaps are my new favorite. super great for the stomach ache and heartburn lately. also, carmels and brownies and fudge. They make wonderful teas. The thing is if you find the right place they can set you up with many strains that will not actually get you high but will help with the side effects. You can also get a more sativa strain which is more high energy, clean the house, do yard work kind. Or you can choose more indica for those times you need sleepy time. Try stickyguide.com
Please let me know if you have any more questions. I am very much an advocate for a bit of natural medicine to go along with all the pharmas I'm taking.
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OBXK - Sending you more ((hugs)). I'm so sorry to hear that.
On the speed of our frickin TN tumors - I had a mammo in October 2010, then a gyn appointment the first week of July 2011, when I know he did a good check because I thought I had felt something on my left side, which turned out to be nothing. One week later - slam - there was a bump on my right side. I assume that's when it first went from DCIS to IDC. Aug biopsy sized it at 1.7 cm, by my late October surgery it was over 3 cm. All three surgeons I went to for opinions, when I wanted things sped up, said 'prognosis doesn't change within a three month window.' I don't understand why they could make such a blanket statement when we already know how aggressive TN is...
I'm off for a D&C/hysteroscopy tomorrow. Hope the polyps are nothing.
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(((OBXK)))
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Spica16 - Thank you so much for the very clear explanation. Wow! what an amazing job you have. You have my admiration. Now I understand. I swear, I used to call the lab and question the receptionist and couldn't understand at all. Now I do. Sounds like such a long tedious process.
Englishrose - My path report reads as follows: Immunohistochemical tests for estrogen and progesterone receptors were performed by manual morphometry on block B2.
The test for estrogen receptors is negative. There is 2+ nuclear staining in rare tumor cells, but in less than 1% of tumor cells. Internal positive control is positive.
The test for progesterone receptors is weakly positive. There is 2+ nuclear staining in 5% of tumor cells. internal positive control is positive.
HER2 test: the invasive carcinoma is negative for HER2 oncoprotein over-expression.
Received from John Muir Medical Center: - 32 slides, 1 block, SUR-10-8393, procedure date 7/27/2010.
My Oncologist told me that I am basically a triple negative, however, they did believe that any amount of positivity, no matter how small, should be treated as a hormone positive cancer. Let me know if I can tell you more out of my reports.
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OBXK - so sorry to hear your latest news. I join all the other TN sisters in sending you love, prayers and hugs.
Doreen
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