Hi Mary and J4DC - I sent you each a PM with information and insight as to how I made my decision and what was going through my mind at the time of diagnosis.  Because my post would have been a little long I sent it in a PM - and I also included other information regarding additional medical information.

Glad you found this forum - best wishes to the both of you!

Hi, journey!  Seems to me the cancer is fast; it wasn't there in Dec. when my gyno examined my breasts, and it was there in January. I am struggling with decisions.  I was interested to see that you had tissue expanders, and reconstruction about a year after surgery.  Can you explain that if you have time?  How do you have the reconstruction a year later, and how did it go for you?

Thanks!  Talk soon, Marynat8

Hi everyone,

I too just read the article about early treatment and for me it was exactly 100 days because I have to have a second surgery and I was told that my chemo was delayed to the very possible last day that they were comfortable holding off treatment. I am a research sponge, I want to find, read and absorb any and all research related to my cancer, treatment, etc. Perhaps it's my neurotic way of maintaining some sort of control - even if it is my awareness.

Mary, J4DC and All Newbies:

In addition to our help, you can also ask a question to the team of doctors at John Hopkins Breast Center. I've done it a few times, and they are very good and extremely fast on responses. Sometimes in as little as an hour, always less than a day. I've asked their advice before on a few things relating to my specific case. 

Here is the link.  You can select what type of question from the choices, i.e:  Pathology/Treamtent/etc.

http://www.hopkinsbreastcenter.org/services/ask_expert/

I hear you, cocker!  My instinct is to cut it out, get rid of it, before it does anything else!  I will talk to docs tomorrow, but I am reading a lot of stuff.  There just doesn't seem to be anything weighing heavily in either direction.  Seems that surgery first, followed quickly by chemo does just as well as chemo first followed by surgery.  I was leaning toward LX till I got the TNBC diagnosis, now leaning toward MX, and thinking about having both MX.  Studies seem to show that if cancer does recur, it is not necessarily in a breast, so in that case it doesn't seem to make much difference if one keeps the unaffected breast or not.  Except for, as you mention, the lopsided aspect.  On the other hand, if one keeps one breast, routine mammos will be in order, and my cancer was not found by a routine mammogram.  Popped up in between.  Yes, I will decide, but it sure is hard work!!  What a weekend, phew!

One of the main reasons I went for neoadjuvant chemo immediately with the issue of a MX or LX to be decided afterwards was because I had several lymph nodes showing up in scans with cancer, and with cancer cells possibly already percolating throughout my body, I wanted the cancer killed first thing.  With a fast MX or LX, the surgeon probably would have had to remove all those nodes, leaving me with a very good prospect of permanent lymphedema.  And any floating cancer cells would have another month (or more if the surgery has complications) to colonize other organs or my bones.  By going for the chemo first before I decided on an MX or LX, not only was the cancer killed in the nodes, and probably any floaters as well, but it also happily did shrink my two lumps, originally totaling 5cm (50mm) down to just one tiny lump of 3mm.  It gave me the chance to opt for an LX, which turned out to have wide clear margins, and a now-clear SNB from just the one node removed for testing.  And I was out running errands the next day, just feeling a little achy.   I believe this was a good deal for me, after I added the nodes and distant cancer cells floating around into the decision. 

We all have to make our own choices based on what we feel is best for us; our situations are all different.   Best of luck whichever way you all decide.

Hugs,

Carol

That is really interesting, it's amazing what they can do!  Sure sounds like a long surgery, but then like someone said, you are sleeping anyway.  I am glad you are so happy with it, and without a nipple!

I was on chemo before I knew what was happening practically.  I was told my cancer at 5 centimeters was too large to operate.  It has shrank an phenomenal amount now.  It had grown from the 2 centimeters at my biopsy.  It was very fast growing.  I am almost glad of the chemo in a way it has given me a chance to catch my breath and realize I have cancer. I guess.  Sometimes I think I am still making peace with it.  I still feel like I want the BMX but I am not sure.  I have now read where NC makes the Insurance make you equitable on both sides no matter what you choose and that was something I was worried about.  I would hate to have to wear a prosthesis on one side all the time if I had a lumpectomy.  I am very large breasted and am not happy with it.

TekWriter, I believe that's a national law.  I had the bc at one spot in the right breast, but I did the BMX because I could!   

LeeAlice, chemo regimens are administered based on risk assessment of the individual patient, including pathology report- so it could be that your risk is estimated at a different number than that of someone who had the other chemo schedule that you mentioned.  If you wanted you can download this manual and see what the preferred treatments are for your particular case.  Also, you can ask the experts at the John Hopkins website (for free) for extra reassurance. (I posted the link a few posts back). All in all, I've seen many women on here with all sorts of different treatment plans, and the thing to remember is that your doctor has analyzed your risk and calculated exactly what they feel would help you. 

I had something completely different than the ACT or AC+T cocktails, I had CT.

Link to Download the:  NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines)^® Breast Cancer

http://infoonco.es/wp-content/uploads/2011/10/breast_cancer_2.2013.pdf  2013 edition - PDF 174 pages

What is the NCCN Guidelines Manual?

"The National Comprehensive Cancer Network^® (NCCN^®) is an alliance of 23 of the world's leading cancer centers, working together to develop treatment guidelines for most cancers, and dedicated to research that improves the quality, effectiveness, and efficiency of cancer care. NCCN offers a number of programs to give clinicians access to tools and knowledge that can help guide decision-making in the management of cancer."

Maryan8

I found my lump. It was not there thanksgiving week - but I found it Dec. 8th. My decision was for BMX. Both mamo & sonogram showed my BC on left breast only. Talked to BS & MO, decided since not happy about how fast  & don't want to visit again, so decided to do both. So relieved that I did. As during surgery BS found small lump on right side, sent for biopsy & did nodes that side too for double check purpose.  Long story short it had JUST started on right side too. So saved myself second visit to OR.  I was just lucky. Everyone has their reasons & their stories for their decisions. You just have to feel out what is best for you. There is no one answer.  Have faith that you will make the right decision for you. 

Prayers being sent. 

Stupidboob

I'm glad Bill is doing great. I was saying my prayers for him & for you to not stress too much.  Each day is a blessing. I'll keep my prayers coming for fast recovery. 

To everyone.  I feel blessed as the  weather here has been great. Of course, South Florida does not get too cold or cold for that long either. I have been getting my Vit D. Been to our zoo & parks with my grandson in the last 2 weeks.  Was in high 70's here today with lots of sun & little breeze. I try to send you all some good weather & sunshine!!

Best to all

Marsha

Glad I could help!  For all of us, It's natural to want to make sure we had the best treatment, but after the dust settles and you are done with treatment, try not to do the 'what if' scenario and second guess your decision or your doctor's treatment plan for you. Remember that your doctor sees a lot of information about your case that we don't.  We basically know your grade and size and stage.  Even the size is unclear, because as you can see it shows us with a default of 1cm on our profile (when the range is 1.0 to 1.9 cm) and then it defaults to the 1cm for the profile info when we post.  And those that have 2 cm listed, that is a default profile wording, as the range is 2.0 - 2.9 cm.  Your doctor has a clear view of everything, such as the detailed pathology report, your age, your family health history, etc.  Several things come into play when your team makes recommendations for you.  So if in the end you are left wondering if you had the best treatment, just remember that your doctor absolutely wants you to have the best outcome, and so he/she has custom tailored a very specific approach for you.

Now how do I know all this?  Because I was the one who challenged my doctor all throughout my treatment about my treatment.  )  It turns out, he is the doctor and I'm the patient! LOL  Just a little humor there.  But seriously, one thing I've learned is that the unique pathologies of all of us really does influence what a doctor recommends.  Once I understood that, I was able to accept it, and feel confident that I had excellent treatment.

Forgot who mentioned this, but someday mentioned if they only did a MX, they would need to still have mammos, and their mammo did not detect the bc.  Just wanted everyone to know, if you feel more confident with an ultrasound, or an ultrasound paired with a mammo, please let your BS know about this.  My BS has not had any push back on this from insurance.  I went to my BS with surveillance recommendations from a radiation oncologist and from some other bc members here, and we do the ultrasound and MRI yearly, but flip flop each procedure so that every 6 months I go through one type of surveillance, one time it will be u/s and the next time it will be MRI.  Keep vigilante and if you feel you need a particular screening process, be sure to discuss the benefits of that with your doctor.  Like many of you posted, the mammo did not show my bc, but my ultrasound did.

On a random note: Did somebody post that they had their tissue expanders exchanged at the same time as surgery to remove their ovaries?  If so, please PM me - I have a question to ask.

Its been a long time since I posted anything, but decided to reach out again....

I am coming to my one year anniversary on March 4th..woo hoo. 

I have a question...does anyone have info about secondary bladder cancer?  I am going in for a cystoscopy (sp) due to having a small amt of blood in two separate urine tests.  The scope is for the purpose of looking at the lining of my bladder. The third  urine test is going to go through path testing to see if there are any cancer cells.  I have no symptoms, and feel like its much ado about nothing, but have agreed to go in for more tests. 

I will do some reserching, but welcome input from anyone. I wish you all well. lori

hi everybody..

Have been reading all your posts, but never could sit down and reply because of this severe burning and itching sensation all over and particularly more under my feet and hands. This is because of Paclitaxel ( Taxol family). I have to keep ice packs under my hands and feet most of the time and all the medicines prescribed to me have not worked. I sometimes feel like tearing my skin apart..it burns and itches so much. Need to have a sleeping pill at night, and once all this is over, will have to wean myself off these pills. Lets see..Tomorrow is my 8th and last taxol and he will give a full dose ( no dose reduction this time since my last AC had to be reduced by 10 percent). Will just finish it off..last resort  is immunosuppresant steroids, to handle my immune system directly and I dont want to take them.

Regarding the discussion going on as to what to choose, neoadjuvant or adjuvant chemo. Neoadjuvant will mostly be a prediction tool. In case you get PCR you consider yourself mostly cured. In case you dont get  PCR then you know that you have a fair chance of recurrence. Neoadjuvant also helps in monitoring how your tumor is responding to chemo. They get the chance to change drugs just in case the tumor doesnt respond to one combination. But then if you are sure that your tumor has not spread to lymph nodes etc then the time spent on changing drugs etc will give time to the tumor to grow, after all these tumors have the fasted rate of growth in stage 1. Moreover, we donot have too many chemo drugs to choose from. Also there is one subtype of TNBC which is highly chemo resistent. Just in case the tumor happens to be one of them and the tumor is in operable condition( as in, it has not spread), then better to do surgery...surgery does offer a good survival advantage, for early stage tumors. There is a test which soon to arrive is CTC ( Circulating cancer cells), which will help monitor the status of circulating cells in the adjuvant setting ( thats a big disadvantage for us who opted for adjuvant chemo, is we cannot measure how the circulating cells are responding to our chemo drugs) 

Also in my case, my core biopsy results said that i am pure triple negative. But my pathology report after lumpectomy said that my tumor has 15 percent estrogen progesterone positive cells too, my onco will repeat the test and i might need to take tamoxiflin for those 15 percent cells too. There are also cases where the core biopsy says that a tumor is pure triple negative but the pathology report post surgery says that its pure triple negative and also pure medullary and hence the woman is not a candidate for chemo, if its stage 1, pure medullary TnBC. So the entire tumor speaks more about itself than just 2 strands taken in core biopsy. After all TNBC is an umbrella of many diseases..we all are TNBC patients but each of us have different diseases actually. But unfortunately we all get similar treatments. 

There was also a mention about relation between stress and breast cancer. Yes, it has been proven in the animal model that long term exposure to stress and social isolation triggers cancerous growth. The same model can be extrapolated for human beings too. Also it has been observed in patients who have already had one cancer episode, that for most of them a stressful event in life triggers a recurrence( most of them ..not all).

Lots of love to all... lets all get through this healthily

I now go to the kitchen and get my ice packs and tackle this itch which is again coming up.. I just hate chemo, somebody please get a targeted therapy soon!!!

all my wishes for your brother Stupidboob! He has a very very brave sister by his side ..

pls let us know what the doc says about your chest ..i hope this is because of rads.

And do keep us updated lori. I pray you complete many more cancer- anniversaries!

Inspired- Thanks for all the links you keep sharing with us. They are very useful

Jianchi: how did your 3rd taxol go? 

I finish my 8th chemo- taxol tomorrow. And I hope all of us never ever have to go through this chemo and cancer business again in our lives...  Next will come 30 Rads. One after another...this never seems to end.