Neoadjuvant ~ I'm in panic mode

Hi Southhamptonmom from one of the other micro papillary women on the boards. To try and answer your questions; they took all my nodes on my right side, insuring no cancer be left behind, I had a lumpectomy followed by a re-excision to clear margins and oncoplasty to make both breasts symmetrical. My Doctor never felt a mastectomy was needed. I'm a little over two years out, doing delayed Herceptin (long story) and the vaccine trial at Hopkins. I know the stats on micro papillary are frightening to say the least. Feel free to pm me with any questions. Have no idea if this info helped, but sending Big hugs. Adele

I'm so sorry you're going through this, I'm not TN but I was IIIc with skin involvement (IBC).  I also had intermammary + nodes they were taken care of with rads and chemo.  To answer your questions...

1. when they take nodes they take more than the + to ensure they get the cancer, the LN are like a bunch of grapes and they take the entire bunch, chemo/rads usually cleans up any stray cells left

2. I've not found any study that said one was better than the other, it's just what the dr thinks is best, for me neo was best due to tumor size & skin involvement, they were trying to shrink it prior to surgey to get clear margins and they did!

3. I did a double masectomy (BMX) with no recon as of yet and most likely won't

4. I did 35 rounds, so 7 weeks and it's much easier than chemo.

5. Went with BMX because my entire breast was infected and there was no saving it and I chose to do other breast because I'm BRCA+, didn't want to be unbalanced and my BS told me it was easier for her to recreate 2 matching breast than try to match a new one to an old one if I chose to do recon later.

6. no recon

7.  I did have skin involvement (IBC) and my surgery went fine with clear margins.  That was a benefit of doing neo, I saw my IBC go away while on chemo so it was never an issue during surgery.

We all have those panic days as long as they don't hang around more than that day.  I just hit my 1 year mark and still have some days but they do get fewer and far between so try to stay in the fight, it does get easier.  Hugs going your way and I hope tomorrow is a better day for you.   

Rose - I had my bilateral mastecomies and immediate reconstruction before chemo.  I had a long discussion with my oncologist about the "order" of things and whether or not it mattered.  Her comment was that oncologists like their patients to do chemo first because, well, they are oncologists and they can see the results of the chemo.  I opted to have surgery first because I needed to know that the primary source of the cancer was gone.  The only things that couldn't be surgically removed were the intermammary nodes that were suspicious on the PET scan.  In our discussion, we decided that watching those nodes return to normal would be her way of knowing the chemo worked. 

Will the chemo keep it away permanently?  No one knows the answer to that question.  I have a friend who has had BC three times, yes three times.  The first time she did lumpectomy and radiation, the second time she had a mastectomy and AC, and the third time (14 years later) she had the other mastectomy.  Whether you do chemo before or after surgery, there is no promise that it won't come back. That's just the hard, ugly truth. Chemo reduces the odds of a recurrence, statistically.  That's why we do it, to stack the odds in our favor.

Regarding reconstruction, have you talked to a Plastic Surgeon? It might be a good idea to do so before your surgery. And get a second opinion. There are lots of options for reconstruction and it will be best to learn of them before you undergo radiation.

I hope you have a better day tomorrow!

Hugs,

Michelle

HI southhamptonmom

I fall in some of the categories as well, I am getting FEC now, round 3 Wednesday... I know I have a grade 3 ER+ and HER-, we know the MRI showed the tumor over 4cm and 2 nodes slightly inflammed. My onco said that could be from the biopsy they had done a few days earlier, but it's very likely it's the start of cancerous cells in the nodes. I just had this discussion with my surgeon last week. She said she will take out the sentinal node and have it biopsied while I'm under, if it's negative she will leave the rest, if she finds one trace of cancer in it, she's taking all my nodes out. I am petrified of this but for life, I'll take it. She feels that after 5 months of chemo (4 rounds of FEC and 4 rounds of T) if that doens't kill the cells in the nodes, nothing will and they need to come out. 

this is a great forum and there are so many loving, giving people here to help you and answer questions, you're not alone.

we love you! 

Hi Rose:  I had neoadjuvant chemo, the same as you, but without the herceptin. &nbsp.   My MO told me that survival rates are similar for both neoadjuvant vs. adjuvant chemo.

Since my surgeon recommended MX, I went with that, and my radiologist recommended waiting for at least a year before reconstruction.  I had 6 weeks of radiation. 

I am sorry you are feeling panic, but it sounds like you are on a good path.  Hope you are feeling better,

GRITS:  Thank you for posting, it is so nice to hear from others with TN several years out. 

Rose -

I hope today is a better day for you!  And heaven knows, when you're going through chemo, each day can be different.  I'm glad to hear that you're halfway through!

There are a lot of good answers already posted -- Jenny did a great summary!  We are seeing more and more stage III ladies getting the neoadjuvant chemo.  Another reason is with stage III the odds of cancer cells circulating elsewhere becomes higher.  So get the chemo in there first, kill any remote cells before they can become established, and then do the surgery.

Sugery was the easiest phase for me.  Before I knew I was BRCA 2+ I was still leaning toward a double mast because I didn't ever want to go through chemo again and I was worried that leaving a breast behind could just take me down this road again.  So I had the modified radical on the cancer side and a total mastectomy on the right.  The surgeon asked if I wanted the sentinel node testing on the right but I declined.  I didn't want the right arm to be affected by surgery.  It was a good call because the right side was totally clear.

No recon.  I was told it wasn't an option for the first year anyway due to the skin removed and the rads afterwards.  Although the skin biopsy was negative, I originally started out with redness so there was always a concern that there had been skin involvement in the beginning.

More hugs!!

Lynn,

You are correct about being staged twice.  The first staging is referred to the clinical pathology and is sometimes written with a subscripted "c".  They do the best they can with scans to determine involvement so they can stage the cancer to determine treatment.  With neoadjuvant, if you have a good response, the second staging (sugical pathologies are subscripted with a "p") is significantly different than the first.  But if you have no response to chemo then it just gets a better definition upon sugical evaluation.  The positive about Sharon is that ER/PR - tends to respond better to chemo so it's likely that she will see a reduction.  I went from IIIa to IIIc.

ladie's,

I deleted my post when I relized, because I did have my tumor out first and new my whole path, I may sound uneducated. I do not want to get the facts wrong, so I will just be keeping all in my prayers!!!! Long lives for us all!!!!!!!!!!!!!

xo

steph

I hope today is a better day southhampton, chemo is rough, you will get through it!!!!!!!!!!!!!!!!!!

When they do a node dissection they take a certain volume of tissue, not necessarily a certain number of nodes. I can't remember what the surgeon told me exactly, but they take out something like - everything below the artery that runs down your arm then everything down to a certain ligament... Not those words, but the same idea. Then after they take out the planned volume of tissue they then count how many nodes were in that tissue. Your surgeon can tell you the specifics.



I had neoadjuvant as well and I don't regret it at all. Not only did I know that the chemo worked, but I felt that starting with chemo gave me a jump on any rogue cells that may be circulating as soon as possible. I wanted the drugs ASAP. Also it was what my onc at MD Anderson recommended.



As far as recon- I had a chemo then a unilateral mastectomy with tissue expander. Inflated the tissue expander during healing, deflated the tx for 6 weeks of rads, then reinflated the tissue expander, then waited a year to reconstruct. I just had reconstruction with dr DellaCroce in New Orleans and do far do good. You should check out his website. There are tons of before and after photos that should reassure you. They can make you whole again and they have tons of photos to prove it.



That's my journey and I don't regret any of it. I'm whole and healthy. It took time, but it was worth it. I think to key is finding a doctor that you really trust.



Brandy

Feel free to pm me.

SHmom, I'm glad to see you're feeling better today...you'll notice it comes in waves and sometimes it doesn't take much to trigger a bad one either, a new ache or pain can ruin a day in a minute if you let it.   I think recon is a personal decision, that's the great thing about this site you're able to see all aspects.  I choose not to at the time of BMX.  My PS was trying to convince me to do TE's at my BMX but I personally felt I had enough going on & was just happy to be alive.  I didn't want to deal with possible complications/infections either.  I felt I could go back later when I was healthier and prepared if I wanted to but so far I'm doing ok without any.  My dr's were thrilled because rads can make healing a problem. 

I'm with sherrig....If I was restaged I was never told and didn't know about that either.  My original path report had me a IIIc and I've never been told any different.  Very interesting, makes sense though.

2 weeks ago I had a right mastectomy (my unaffected breast) and a bilateral DIEP reconstruction. I've only done stage 1 of a 3 stage procedure, but so far so good. Everything is healing well and I feel better everyday. I'm still coming to terms with my new body and I can tell that it won't be long until I look down and feel normal again.

best of luck to you southhamptonmom...

I know you didn't ask, but my onc. was pretty specific about suggesting that you do not need reconstruction.. that some women might do better if they didn't have a hunk of gunk blocking what should be treated down the road.  I am very comfortable with my nonreconstruction.  ... just something to discuss with your oncologist..  again, best of luck.

I hope it didn't seem like I think that you must reconstruct to feel whole. Personally, that was my choice/feeling, but I understand choosing not to reconstruct. Its such a personal decision. I just wanted to let you know that there are great options available if you choose to reconstruct. My number one concern is No Cancer or Manageable Cancer. In a distant second comes appearance.

Hi Rose, I just wanted to say I have the same cancer as you, I'm starting Chemotherapy on Monday. My tumor takes up my whole breast and is 10cm, I can't wait to start chemo to see that sucker shrink down:)