Calling all TNs

Jenjenl - you are correct, my dear! It can also be brought on after a lumpectomy by rads. It's a beast we just can't seem to be guaranteed an escape from!

Me personally - I would go ahead as, even though the primary tumor was small, the positive node indicates it had made its way out of the breast tissue and the nodes are what the rads are supposedly very effective in treating. Others may have differing opinions but that my thought on it.



Good luck with whichever route you decide to take.

I don't know if there are any meaningful stats. (the usual crapshoot) You might want to ask on the lymphedema forum - there are some very knowledgeable ladies there. Binney and Kira come to mind. Maybe PM them.

Hi ladies re lymphoedema.  It doesn't always happen straight away or even a few weeks or months.  If you have had surgery like us it can occur even years down the track. That is why I wear a special bracelet that reads no IV Leurs, No BP's and no injections (ever) in the arm that the nodes were removed in.  You must always be careful of that arm and make sure you don't carry heavy things with it.

Karen my port never returned blood.  Perhaps thats why it eventually blew a fuse.    

argynnis: Besides shrinking a very large tumour to improve surgical options, one of the chief reasons to do neoadjuvent is to reach any possible stray cells right away and see the effects of the chemo through tumour shrinkage; the onc can then switch up a regimen if the tumour is not responding.

That doesn't really apply in your situation as your tumour is mainly gone, so I can understand the argument for completing the surgery now, then moving on to chemo. You're getting opinions from a few docs which is good; ask lots of questions and go with your gut. 

The risk of LE is lower with a SNB than an ALND; and for sure the surgeon will stop there if all looks good. However the SNB could still come back + on pathology, and then you have another decision-- based on size, risk factors etc., whether to do ALND or just rads. 

I know LE is a real concern (and some women suffer greatly with it), but of course it is simply one more risk we weigh off against the benefits of a treatment, which may very well save our life.  (and yes any breast surgery, rads or node surgery increases the risk.)

Spica - we had the same weather in Idaho - on the Palouse.

Jenjen, I feel for your dilemma.  When I was DX (5/2009) I did not qualify for rads.  I had 3 positive nodes and it wasn't enough to get rads.  Had BMX and TAC  and a successful reconstruction with implants.  When a year or so went by, I read somewhere here on BCO that the recommendations for Rads had changed.  I asked my Onc about it and she said it was to late and since my PET scan was clean, there was no need.  She reassured me that It was OK to keep Rads in our back pocket if BC should return.   That being said, I am almost 4 years out and glad that I didn't have Rads.  Any treatment comes with risks and SE.  Maybe a second opinion is in order?  Not sure if you have done that or not.  Gosh, this is scary stuff, ins't it?  Do what feels right for you.  wishing you much luck.

NavyMom,

Same here, I also did not have rads.  Did you have the genetic testing done?

Keke,

I adore your PS too!  He sounds like mine.  He totally did not have me rush my fills.  If I was too close to chemo, we would skip a few weeks.  It helped as well that my natural breasts were an AA and I was only going up to a size B, so we didn't need a whole lot of fills to accomplish that. I too had hair long - down to almost my waist. I cut it short, but only about when a strand fell out.  Now after growing my hair, it looked good super short, but now it's in an awkward stage, so I'm still wearing my wig!  I'm so excited for you and all your updates!

Lady Miz,

I was so happy to read your post that John Hopkins medical team got back to you so quickly!  That is awesome that you received additional information and a good heads up on where to proceed from a qualified medical perspective.  

Thinking of all you ladies and sending out extra prayers for everyone tonight.

KeKe, I can feel your relief and positive outlook in your words.  You brought a smile to my face.  Regarding your hair, I did exactly the same thing.  Had long blonde hair and had the lady that has been cutting my hair for 25 years cut it into a cute Bob.  And I ended up really liking it!  But it was only a few weeks and it was gone.  Once my hair started to come out by the handfuls, I had DH shave my head whlie we outside on the deck.  The wind took most of it away. Chosing to cut it and then shave it gave me a tiny bit of control during a time when nothing else that was happening did.On congrats on getting those damn drains out.  Hated those things.

Inspired:  I am BRCA 1 and 2 negative. No family history either. Curious about this other genetic testing, tho.

Navy Mom,

What the rearrangement sequence is (BART), the genetic counselor told me it is like baking a cake and dumping the ingredients in the wrong order.  So if you add flour after it's done, or stir in the frosting, you have an issue.  They look at the whole strand.  The additional testing (if it were not to be covered) runs $750 at the lab.

It's now been added to the NCCN guidelines.  It's called Large Rearrangement Test.  I bet you could get it done now and approved.  They have found as many as 6% - 10% of hereditary breast and ovarian cancers have this type of mutation!

BC before age 50 qualifies, per this chart - or there are other qualifying methods as well.

Here is the link:http://www.myriad.com/lib/brac/BART%20one%20sheet.pdf

Hi everyone. I got the results of my scans. No mets! I had my right side mx and rt axillary node dissection on Tuesday. I'm feeling good and have not needed pain meds today.



The MOs at the breast center at MDA will discuss my case and I will find out on 3/27 what the treatment will be.



I will come back later and try to catch up on everyone, but I'm too sleepy now.

Phyllis

phgraham - congrats, what a relief

Hi Everyone,

I know I haven't been posting but I have been lurking to try and keep up. I had to stay away for awhile to try and not be so focused on BC and try to get back to the new normal.



So much for that idea.



I went to an oncology visit at DF in Sept. and brought up some concerns. They decided to do tumor markers. (I found this humorous, because when I had asked about these earlier in my treatment they told me the "were unreliable and not in their standard of care"). They came back normal, so they felt scans weren't necessary.



In January I went to my rad onc. Brought the same concerns up. She felt all was fine. She was NOT happy when I told her my primary had CAT scans ordered for the next day



It has taken some time to get answers on the CAT. (I brought all my previous CATS in, but the radiologist didn't bother to look at them and compare. You can do everything right, and sloppy people don't do what is standard medical care.)



I had an appt with my primary this week ( he initially thought the findings were not new). After some discussion, he put a call into the radiologist to pull out the original CATS and do a comparison.



I have a 1 cm mass in my R high axilla in the pectoral muscle that IS new. (One of my original tumors was deep in the R pectoral muscle)



His new advice is get thee ass to DF and get it out if they can (it's location, depth and small size may make it hard to biopsy). Plus remembering their theory of leaving tumors in during treatment is giving me the willies today.



I have a routine appt already booked for 4/3 (I also have a new onc. because mine is leaving)



What will be, will be. But I can tell you one thing, the next doctor that tells me that (especially when it comes to follow up scans and breast MRI's) that it's not "their standard of care" best be ready to eat their words lightly sautéed! If this is the beast back, it's hopefully been caught at a small size because I ignored them and have a great primary!



Best wishes to all. I've especially missed your humor in face of this.

Phyllis - This is awesome news, congrats!

Kathyrnn - Kudos to you for continuing to get the answers and the protocol of care that you deserve!  It just reminds us all that we must be vigilante.  I'm so glad you went with your intuition and insisted on follow through. I too had my GP close the gap on some additional things I felt were necessary for my follow-up care, such as a chest x-ray and testing of vitamin D levels.

Here's my update:  I had my exhange surgery last week (2nd one), and I had been going round and round with the medical team on this piece of scar tissue.  MRI showed it as non-malignant, but still given a birads3.  So my PS agreed to remove that, and other tissue, resculpt me, and give me new implants. He agreed that with my overall piece of mind, it was important to remove that piece of scar tissue.

I saw him today, and the tissue removed came back from the lab as normal!  And, I found out yesterday I'm BRCA negative.

I know what you mean about leaving the boards for a while to try and balance normalcy in life with moving forward, and trying to move away from this bc.  I've done the same thing as well.

I'm also learning not to peruse the interent late at night.  It's always then that I come across something, that I wasn't looking for, that I wish I hadn't read.

Have a nice evening everyone!

Thank you - it's been a long process to get to this point, 15 months!    How are you doing, are you at the halfway mark with your chemo regime?