Calling all TNs

Simplelife Dr Mayer is OUTSTANDING. We live in Huntsville and traveled up to see her when my wife was first diagnosed. She wrote up a consult report for us and sent it to the local doctor, who followed her recommendations for chemo. She drove the bus on my wife's treatment even though treatment was administered at the local cancer center by the local Onc. If he wasn't willing to follow her recommendations we would have traveled to Nashville for treatment. You're in GREAT hands there. I posted earlier about a guy at my job who's wife's TNBC tumor was "the size of a deck of playing cards". It's 8 years later and she is doing just fine. Dr Mayer was her doctor as well.

Hi Everyone, I've located the actual medical journal that talks about that study - the Journal of Medical Oncology.  It is 10 pages long and there is a graph on Page 3.

http://jco.ascopubs.org/content/early/2014/01/21/JCO.2013.49.7693.full.pdf

They term it TTC (Time to Chemo ) and in the opening paragraph:  "For patients with breast cancer (BC) the optimal time to initiation of adjuvant chemo (TTC) after definitive surgery is unknown." In the conclusion paragraph (3rd paragraph on front page) it said that "our findings suggest that early initiation of chemotherapy should be granted for patients in these high risk groups." In the sentence before that, mention of specific groups was stage lll bc, TNBC, and trastuzumab-treated HER2-positive tumors - but read the sections in entirely to understand full context.

I'm printing the chart now from page 3.

From the chart, I see that there were 4927 people, 889 were TNBC or (15.2% of the total people in study). Of the TNBC population in this study, 321 started chemo in 30 or less days, 412 in 30-60 days and 156 started at greater than 61 days. The top of the chart says TTC Among Patients with Stage 1 to lll BC Diagnosed between 1997 and 2011 and Treated with Adjuvant Chemotherapy.

It's interesting to note that the study made up of people from as far back as 1997 ... because today's treatment standards may compensate better now, when starting treatment at greater than 30 days.

Sure is a lot of variables here! Apparently there are 2 more pages I should have printed of the charts - the survival page. I'm doing those now.

More .... on the 3rd chart is has TNBC patients

TTC less than or equal to 30 days:  5-year OS (overall survival) at .70      31-60 = .59     and    greater or equal to 61 days = .67.

That was interesting that the longest TTC did not have the lowest OS percentage.

It talks about number of events, but I don't know what events it is talking about. Maybe the article describes it.  Well, anyways, for the shortest TTC group (less than 30 days) they had a 131 events out of that 321 people, and 5-year relapse free survival was at .56.

Gosh - that seems a bit harsh.  The middle TTC group had a 5-years RFS at .52 and the third TTC group (over 61 days) had .53 survival.

It tells me that there are so many different reference points ... overall survival, disease free survival, distant relapse free survival, etc.  Further into the article it talks about the majority of studies already done did not show a detrimental effect in postponing chemotherapy within a specified time frames.

There is a lot of information, so read slowly and don't panic. Remember the title ... from 1997 to 2011.  Even between last year to this year chemo regimens known as Preferred have changed in the NCCN Guidelines, and this information may not be as relevant with today's standard protocols.  When in doubt, ask your Onc about any treatment delays and if it changes any prognosis factors.

Kathy, I just wanted to say your story about your "early warning system" did make me laugh out loud when I read it.  Do you want me to come shoo the birds away for you?

ALHusband, that was great hearing about your wife's experiences with Dr. Mayer and your friend's wife with the "deck of cards" tumor.  VERY ENCOURAGING!  Thanks for sharing all of that.

I had my surgery 1/29 and am meeting my MO 2/18. Now I'm so worried about this "30 day" thing. How long does it take for them to set you up for chemo? I mean, I may need a port, blood work, etc? I feel like the clock is ticking. I printed out the article to bring to the doctor.

Went to a funeral today for a colleague who lost his battle with colon cancer. Just reminds me how much cancer sucks. He was only 52, less than a year older than me. His dad had died young (52) from colon cancer so they were closely monitoring him. He had gotten sick & they couldn't figure out what it was at first - colonoscopy (2 I think) came back negative. They finally diagnosed the cancer and found the tumor was growing outside of the colon.  Had another conversation with someone who questions whether its a conspiracy that we haven't found the cure for cancer yet with all the $ the pharmaceuticals make - had never really thought about that......

Megomendy welcome to you. Sorry you have to be here but I don't want you to start worrying about the "30 day thing". We are all individuals and your doctors know exactly what has to be done for you and it will be done in plenty of time.  Stats and studies cause needless worry.  The same ones have been on here since I started and I have never taken any notice of them yet.  You don't need extra concerns you have enough to deal with.   Once your plan is in place you will feel better and your fighting spirit will take over. We have all felt the same so hang in there girl we are holding your hand.

Kathy well blow me down you have a "little shit" too.  Geez I laughed when I read your post.  That little bird just called by to say Hi and to tell you everything will be okay this time.  Besides he didn't have the rest of his/her flock with him did he.  Rest easy girl things will be just ok for you.    I'm glad you are taking good care of our mum.  Summer is coming to you and she will build up a good resistance again.   

Slowloris - Neoadjuvant  is chemotherapy and/or radiation therapy which is given before any other treatment such as surgery or other chemo agents.   It's classed as a first line treatment.  

AL Husband we have several men in our surgery that have been diagnosed with breast cancer. Hardly seems possible does it but the darn thing creeps in everywhere and anyone. Yes it is rare but they usually have a good prognosis with it though as it shows up very early in men.   It's good to know there is  supportive threat on here for them.    

Have a good day ladies and try not to worry. Things have a way of working out.          

I PM'ed fighter the other day and she is doing what she does best everyday...fighting.  She said the chemo she is on is working since she can feel the nodes shrinking. 

I had surgery first as well. I didn't start chemo until 45 days after surgery. Like Jenjen said, it doesn't really seem to matter in what order treatment goes, cancer will do what it chooses. On one hand, it might have been nice to see if the chemo was shrinking the tumors, but on the other I was happy to have it removed and out of me! Thanks for updating us on Fighter!

Meg, I think you are well-informed with the recent information and have all your facts with you.  I would also press forward on trying to get started on treatment as soon as possible.  In the paragraph below, it mentions how cancer cells can break away and if allowed to grow they can establish new tumors in other places in the body.  So anything you can do to limit the opportunity for this is important. 

My Onc and his team were not happy when at Day 21 port surgery had not been scheduled.  Also, when the original doctor called to tell me that I had Grade 3 Breast Cancer, he was extremely aggressive with time frames.  He told me "you need to find a doctor who can see you within 24 hours, not 4-5 days - this is Grade 3".  At that time we didn't even know it was TNBC.  Of course, it did take me 48 hours to get in to the office I wanted. The original doctor really demonstrated to me how serious and aggressive a Grade 3 bc diagnosis is.

To answer your question directly, it is usually pretty easy to get in to a port surgery, because of the short surgery that it is - however it could be a really busy time right now, so I don't see why there is any reason you can't go ahead and get your port surgery on the books, even if you are still waiting for something else.  Since it's usually a twilight surgery, I'm not sure that you will need new labs ahead of time to have the port surgery done - and they will draw labs at time of your procedure. If you have recovered enough from your surgery and your most recent values are within 30 days of the port surgery, then you might not need any pre-labs.

They say you can have chemo immediately following port surgery, but I had it within 48 hours and my spot was tender and not really healed quite yet.  I had a cream that I had my nurse prescribed, it was Lidocaine and I would apply that about 1 hour before the Onc appointment. 

Here is more information for you - paragraph is from this link below:

http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-treating-chemotherapy

"When therapy is given to patients with no evidence of cancer after surgery, it is called adjuvant therapy. Surgery is used to remove all of the cancer that can be seen, but adjuvant therapy is used to kill any cancer cells that may have been left behind but can't be seen. Adjuvant therapy after breast-conserving surgery or mastectomy reduces the risk of breast cancer coming back. Radiation, chemo, targeted therapy, and hormone therapy can all be used as adjuvant treatments.

Even in the early stages of the disease, cancer cells may break away from the primary breast tumor and spread through the bloodstream. These cells don't cause symptoms, they don't show up on imaging tests, and they can't be felt during a physical exam. But if they are allowed to grow, they can establish new tumors in other places in the body. The goal of adjuvant chemo is to kill undetected cells that have traveled from the breast."

News is reporting Shirley Temple has passed away at 85 due to natural causes.  In reading highlights of her career, she survived breast cancer from 1972. She had a mastectomy and became one of the first prominent women to talk openly about it - her motivation was so that other women could have the surgery they needed without fear.

There is a book on Amazon by James Olson, that has quoted her as saying:  "The doctor can make the incision; I'll make the decision." The text around it talks about being an advocate in your treatment plan.  Very fitting for our forum!

The book by James S. Olson is called:  Bathsheba's Breast: Women, Cancer and History

My wife's BS put her port in when he did her lumpectomy.

Congrats curlylocks that is good news indeed.

Curlylocks - Outstanding!  I will try to do a somersault later tonight for you.  Beaming with your excellent news!

Curlylocks- the only thing that tasted good to me during my "yucky" days after each TC was ice cream- didn't seem to matter what flavor! It was difficult for me to drink water because it tasted awful- no matter what I put in it, it still was bad, but I drank it anyway-even made me gag a few times! So happy for no metastatic spread!!!! WOO HOO!!