TRIPLE POSITIVE GROUP

Nice to hear about some success stories...I needed that..

I am going for my 7th round for taxol Monday, getting my last perjeta and herceptin before planned surgery right before christmas...my lump has so far remained the same size 5 cm...I guess I am not part of the lucky ones where it shrinks...some shooting pains in different parts of my body..like my breast that is well and in my ovaries area (thinking of course I might have mets...scared.. Head ace as well...I have 3 rounds left of taxol and can´t wait for this to be over..I keep asking my doctor if it is possible for the cancer to spread during treatment..considering my nodes were healthy this summer. I am not getting a straight answer and that scares me too..there are no guarantees for anything..but onc keeps telling me the lump feels softer. They will remove the entire breast since no shrinkage, so having meeting with the surgery team to discuss removal of the breast and ask if I should remove the other one as well or what would be best for me.

Not looking forward to christmas this year...

Did anyone have the cancer spreading while in treatment before surgery? I feel like I am playing chess with death like in the old famous Bergman movie...

Also, i see your nodes are clear. That is super good. Mine appeared clear on MRI both before and after neoadjuvant chemo, thank dog.

My oncologist said the tiny clusters of cancer cells are easiest to wipe out with chemo, so it seems the risk of metastasis happening during neoadjuvant chemo are vanishingly low

Oh Kattis. I'm so sorry that your tumor seems unchanged in size or even a bit bigger. My oncologist says that tumor size is difficult to measure before surgery. How has your oncologist been measuring yours? We were able to see changes in my lump because we did a PET scan and an MRI before chemo and then a PET scan and an MRI after chemo.

I too have been confused if being triple positive ends up being a good thing or a bad thing. Yes, I understand that my cancer feeds off Estrogen and has the HER2 receptors, which can make things grow faster...but as was said, they have found so many meds that can treat these things now, that can't treat if you aren't positive...I honestly feel like it's a "bad thing" that your cancer feeds off everything, but a "good thing" since now they have found so many ways to battle the positives? It's all very confusing trying to figure out if I'm happy or not with this pathology.

Hi everyone:  

I don't post much  on this thread but I do read often.  I feel in a way that  I know you  all and so appreciate your knowledge and insight. 

I'm wondering if any of you might be able to help with a rads question. 

I had a mx with reconstruction;  micromets in 1 of 4 nodes; adjuvant weekly TCHP chemo.  I just completed chemo last week and asked about radiation. My onc couldn't recall the original tumor board presentation and she didn't see a note on file  about the RO recommendation on rads.  In fairness to her I changed MOs at the 11th hour and started seeing her after chemo began.  She wants the RO to weigh in and then we'll decide.  She's uncertain due to micromets.  Initially everyone (I got three Onc opinions) said that micromets didn't count as node involvement.  

  I looked at the updated Oct 2016 ASCO rad guidelines for those with mx and am still confused.  Studies I've seen say that radiation for mx with micromets is a gray area.   All this to say I'm not seeing MO again for 2 weeks, at which point she will have spoken to RO. I feel like this is going to be one of many steps along the way where I'm going to be asked to make the final decision.  I want to be prepared and I almost feel that I would be wise to start looking for a second opinion. I love my MO but my diagnosis and original treatment plan were fraught with mixups and mistakes (at other groups, not hers).    

I notice here at BCO that many get rads with mx and no node involvement, so I feel even more confused.  

Have any of you had mx with micromets and decided to do radiation?  I obviously want to increase my survival odds but at the same time I'm worried about my implant and even more worried about lymphedema. I just read some study that said mx with rads increases lymphedema chances to 75%? 

I hope I'm feeling  crazy and uncertain due to chemo exhaustion. I'm so tired of everything being so complicated and scary. It seems like it never ends. 

Thank you, all. Sending love and light your way.   

Willa. More plays in to Rads recommendation than positive nodes - LVI. Aggressive subtype ( whicher her2 is) and younger age play in to rads revommendations. Those 3 factors are why my RO encouraged rads with no positive nodes ( on imaging as I had chemo first)

Kattis. Scar tissue also feels like the lump. Mine did and I had a complete respibse

Kattis894 My Breast surgeon explained to me that tumors don't just melt like a snowball in the sun when treated with chemo/etc. It's more like swiss cheese. They won't know for sure till the get in there. Even the size can change. My tumor was 1cm smaller than they thought.

willa216 I was in a gray area too due to tumor size although no node involvement. There are so many things to consider that we can't even begin to understand. Even my PS didn't keep up with the rads recommendations because it changes so much. I did get a pass but I think it was because they would for sure hit my heart…risk vs reward not there for me.

Kattis894

Ditto the other ladies. I had a 3cm tumor that did't feel any different during and even after neo adjuvant treatment. It was only when I had an MRI just prior to surgery that you could see that the cancer was gone and I'd had a complete response. But there was still a palpable lump of scar tissue that was removed in my lumpectomy.

They'll be able to see clearly how extensive a response you had only after surgery.

Lago and Rozem : Thanks for your thoughts on rads.  I think I'm trying to stay ahead of the game and discounting the fact that I know so very little.  Maybe better  just to take it as it comes.. Thank you, again. 

Kattis:  Hugs to you.  I'm sorry you are in such a stressful spot.  I don't have anything to add that's helpful for your neoadjuvant response concerns but please know you are not alone.  Sending good thoughts your way. 

Newbie here hoping for information...

I completed neoadjuvant therapy consisting of 12 weeks of taxol, herceptin, Perjeta then 4 bi-weekly AC infusions. I had 4 MRIs at different points prior to surgery. The doctors never thought lymph nodes were involved. The tumor disappeared on the MRI and PCR was expected. I had surgery on Friday and both sentinel nodes were positive. Briefly scanning this board I am not seeing posters who had positive nodes following chemotherapy. Has anyone experienced this? Did it change your treatment plan? What were you told regarding prognosis?

I didn't have a mastectomy, but I was told that at least here in the U.S., reconstruction / cosmetic surgery was covered, no matter what the decision would be. Even down the road, if I decide to have prophylactic surgery of both breasts, cosmetic surgery would still be covered by insurance. I would think reduction would qualify under that.

Kattis, my impression is there are three reasons you might get better results doing the reduction on the other side later on. It would be easier to recover from the mastectomy if you have one good side. A friend here was told the rate of complications from single mastectomy is 4% but 14% for double mastectomies, so there is a benefit to doing one side at a time. And it might be easier for the surgeons to achieve symmetry if they can alter your natural breast to match the reconstructed breast.

You should definitely push for what you decide is best for you, after you consider all your options and trusted professional opinions. The power to choose makes us less a victim of all this crap.

Kattis:   I second what Tunegrrl and Mommato have said. I had a unilateral mastectomy with immediate reconstruction.  My PS said she wants to  wait until  everything settles before she does  anything on the opposite side, if need be.   It takes some time to see where your breast will "sit" , what the final shape will be and how it will heal (especially if radiation is needed).  I wish somebody would have made it really clear to me upfront that immediate reconstruction is a multi-step process that can take some time even when everything goes well.  It's wonderful to have reconstruction as an option but it does requires patience.    Please be sure you speak to your surgeon, though, about your expectations. If you feel confident you will be more relaxed in recovery and that will help you heal.    Take good care. 

Hi Kattis!

A lot of women choose to go flat after surgery, and many choose a bilateral mastectomy to achieve symmetry. There's a forum here entitled "Living Without Reconstruction after a Mastectomy." There's also a BCO Page: "Going Flat: Choosing No Reconstruction." If you do choose to go flat, you may face some resistance from the surgeons, many of whom assume that women will choose reconstruction eventually. So, they leave extra skin "just in case" they change their minds. Of course, if you're serious about no reconstruction, you will then have to get another surgical procedure to get rid of the extra skin to achieve a suitable flat look.

Good luck, and I hope that your surgeons are responsive to what you want, not what they want.

Kattis, I had the same diagnosis, the same treatment (I live in Europe too) and the same concern: after all the treatment the lump felt the same. But when I had the operation they found the tumor had gone from 4.5 cm to 3 mm, the lump was mostly scar tissue from the biopsies. So they went for a lumpectomy, node removal and radiation. Now on Tamox, it has been 4.5 years and I am doing fine!