ANYONE WITH TUMOR BIGGER THEN 5CM

Hi: I'm so sorry that you've had to join our club. Have any of your doctors talked to you about doing chemo first to shrink the tumor ?   Have you had the opportunity to talk with an oncologist yet ? My tumor was really small - but I know in many cases they are doing chemo prior to surgery when there's a large tumor. 

You are in the part of this journey that I found the hardest to deal with - you know you have cancer but you're not certain of what your treatment will be -  you want to get the cancer out of you as soon as possible - I think we all feel that way and are surprised when things don't move along as quickly as we think they should.  Once you've got a treatment plan in place things do seem to get easier - as then  you're following the steps of the decisions that have been made. 

Hugs,

Doreen 

Hi Simone.

So sorry you had to join us bc sisters but you're in the right place! No question, you are going through a hundred thoughts, anxiety, questions etc. There is a wealth of knowledge here, however I recommend to not over do it as it can depress you. First of all, know that bc is NOT a death sentence and so many women survive.

So they are performing surgery first before chemo? Have you discussed your Pathology report w/your Onc.? Sometimes they recommend chemo first as they did me.  My tumor wasn't that large, but had spread to my lymph gland and is an aggressive cancer. With the chemo first, I had a very good response and my tumor shrunk dramatically.

Another issue is, if you have the bi-lateral mas and have the expanders, I'm not sure if  you can do RADS. You need to find out.

Chemo is tough. No question BUT doable.  I am doing 8 rounds. I did 4 rounds of A/C and never vomited. I am now doing 4 rounds of Taxotere and have 2 more to go. This one is the harder for me. Achy joints and flu like symptoms. But you will get through it.

I had similar thoughts about pain related to mets. Chances are it's nothing. (Our mind plays lots of tricks).  They haven't scheduled a bone scan, mugga scan or PET /CT scan yet?  Check w/your onc. Chemo prior to your surgery may be a benefit for you.

Stay strong in faith Simone. It will be your rock through this incredible journey. It will also get easier.

God Bless,

Jeannine

Oh - just wanted to add that I had an expander inserted and inflated prior to radiation.  2 months after I was done with radiation, I had the expander replaced with a permanent implant.  I am seeing that my skin is tighter due to the radiation and it has flattened out my breast so that it doesn't look the same size as my real one.  A bit disappointing, but if that's my only problem, I'm good!

My sister, who was diagnosed two weeks before me, had ILC...her tumor was 7 cms.  She has been getting chemo first...doctor wanted to shrink it before doing mastectomy.  She just called me...her breast was hurting so they did an ultrasound...and the can't find the tumor!!!!!!!!!!!

Woohoooooooooooooooooooo  She had 6 cycles of AC and is now getting 12 weekly cycles of taxol.

She meets with her doctor next week to see how they will progress!

my original tumor was 7 cm as seen on MRI. after my first round of AC the tumor had shrunk by 1/2. by the time I finished 2 of 4 rounds of AC the tumor was non-palpable. I have since had taxol and taxotere. My bilat is scheduled for end of Feb and I am not expecting them to find much cancer. It makes doing the neo-adjuvant treatment WORTH it....I know my cancer is dead and it gives me a lot of inner peace.

That is kind of the way it was presented to me as well.  Chemo first was an option if I wanted to try to not have a mastectomy.  However, my onc thought that I would end up getting one anyway.  They way I decided was that I would rather have the surgery and follow it with chemo to catch anything left behind rather than worry that the chemo didn't get it all before the surgery.  He told me if I had chemo first, I would not get any more after.

Simone,  I had a 6.5 cm tumor in the right breast and also 1 positive lymph node.  I automatically was recommended to have the chemo prior to surgery and was told this is the "new" way.  I am in North Florida and the head onc in my group is originally from Sloan Kettering, in NY. 

It is probably too late for you to request a change, but perhaps if any other bc sisters are encountering the same thing.  Be your own advocate!  Taking some time to make a decision normally isn't going to make much difference in the outcome, however, it may make much difference in the path of treatment.

The radiologist told me to pick up a copy of Dr. Susan Love's Breast Book, which I did...  Also, I had a nurse navigator assigned to me immediately after diagnosis.  She co ordinated all of the initial appointments.  Once I saw the surgeon (4 days later), he called the oncologist immediately... who saw me the next day!  I had a pet scan the next morning (Friday), then a mugga test , AND had the results of the pet scan by Monday NOON!  Port put in for chemo that Friday, and chemo the next week!

As far as choosing to have bilateral, it is a very personal decision, however, there is no indication that it is medically necessary and can give a false security.  I urge anyone to really do the research on that.  Dr. Patrick Quillin has a great book called Beating Cancer With Nutrition... and says cutting off body parts is Not the answer!

Though I respect everyone's personal decision, I also urge you all to be your own advocate!

The chemo is actually meant to seek out any cancer cells floating elsewhere in the body... and the radiation is to find any left behind in the area of the surgery.  Unfortunately, we have tests that show tumors, but we have NO medical tests that show cells other than thermography which insurance will not pay for!