LARGE tumor size!

I had a surprise..my suspicious breast lump on US was approximately 2.5 cm -  the mammogram was not helpful showing only architectual distortion due to the mass. The biopsies did not sample well were not helpful to determine what it was and so went for an excisional biopsy last week 2/3//11. They removed an 8 cm tumour that on pathology was all ILC with some DCIS and LCIS and the margins were not clear. SNEAKY ILC!

Still processing this before the appt with the BS tomorrow. Anyway am having thoughts that the treatment will be surgical bil Mx with rads and +/- chemo and tamoxifen. Not sure though how it is usually approached with a grade 1 cancer as it is slower growing and presumably not as responsive to chemo and rad. Anyone else have a huge grade 1?    nodes still to be located and tested too...

Hi Paisley..that gives me a bit of hope - having an MRI on the good breast to determine if it needs to come off too. I really hope that it will respond to chemo - I will be getting the results of the oncotest DX so that should indicate if it will be useful for me. Hopefully it will be a chemo responder like yours  - I will be throwing everything at it!

Hello! I'm new to the forum. This is my 2nd go around with breast cancer. First was (4/08) DCIS stage 0. Lumpectomy/radiation

During my 6 month follow ups (mammos & ultrasounds) nothing was found. 1/11/11 suspicious area found with ultrasound. Core needle biopsy confirmed ILC. Possibly 2.5cm to3cm confirmed with HD MRI and 2nd opinion thru UCSF. Had bilateral mastectomy on 3/10/11 with immediate reconstruction. Sentinel node with micromastitic clusters discovered with imnochemistry. 5 additional aux nodes clear. So here's the mother shocker of them all, tumor 11cm.

I know I am in a grey area of direction of treatment and very scared about what to do, reoccurrence, and life expectancy. Some oncologists consider the imnochemistry discovery of micromastatic clusters a positive node some consider it negative. Having this huge tumor has caused more of a grey area...btw surgeon confirmed clear margins on min 4mm to at least 6mm from tumor.

I met with oncologist and it was all a blur but was suggested 3rd generation chemotherapy (?), hormonal therapy and radiation. He has placed order for oncotest, results 2-3 weeks-this was by my request. He did his bar graphs with his % of recurrence with all the treatments. Best outcome is only 88% likely of non occurrence within 10 years. That's not good enough for me and I'm scared.

I live in the San Francisco bay area so my Dr.'s are in San Ramon but we have referred to UCSF for 2nd opinions.

Anyone else in this grey area that I am. Terrified of chemotherapy and shocked about having to have radiation. Just afraid of all this poison in my body but I want a nonoccurrence rate closer to 100%.

Katarina, I had double mastectomy with Diep and after that I had chemo. No problems. I did not need radiation but during consultation I was told if I needed it it could be done without causing problems to flaps.

Hi Katarina,

I'm so sorry you've joined the club to which no one wishes to belong.

I had a right side MX with immediate reconstruction (latissimus dorsi flap) in October 2009; launched into chemo four weeks later, no problem.

The hardest part was squeezing in the implant surgery before radiation and after chemo. It was tight scheduling, and I suspect there were some tense negotiations amongst my plastic surgeon, oncologist, and radiation oncologist, but it worked out. Did the final implant May 2010, started radiation 2 weeks later. The one downside of doing radiation before the final touches - ie, nipple - was that radiated skin doesn't like being twisted into a nipple, so I'm Barbie boobed now. I actually like the way it looks, but that, too, is subjective.

The original surgery was very long - 9.5 hours - but a lot of that was the lymph node dissection. The dissection takes a while if one has positive nodes - they keep "unrolling" the nodes, sending them to pathology for immediate analysis, etc etc. Anyway, 15 nodes later, that kept the surgery going.

I just did my left MX with immmediate recon, again latissimus dorsi flap - out in 5.5 hours.

Just my opinion, but it isn't fair for your surgeon to rule out recon off the top. It's your body, and s/he has the professional obligation to have the discussion with you, and remind you that you have the option to use another surgeon who will do the recon if you want it (I am certainly  not advising what you should do on recon - to each her own!).

Feel free to PM me about the recon if you wish. Good luck. We're here for you!

xo

Janyce

Katarina,

I'm so sorry your in the club.

I'm looking for a positive view on your path report.  The 1.7 node sounds large to me.  I only had a .7 cm tumor in one of my nodes.  But you don't mention extracapuslary extension.  That is where the cancer has broken out of the tumor and moved into the fatty tissue.  Not having EC is definitely a bonus if that is the case.  They told me that radiation takes care of cancer cells from EC but it leaves one wondering.

I also am guessing that you didn't come back pleomorphic.  That's another good thing.

How about the margins?  With the primary tumor that large it seems like clear margins would be hard to achieve.   

You are awesome ladies. Thank you for your reassurances.

I did note that my path report says "without" extracapuslary extension but the Surgeon noted my margin was only 0.1 cm which as you know is 1 mm. That's not very reassuring. I didn't sense he was happy with the situation and for the forth time told me he had no tissue between my breast bone and tumor to really work with on the major/superior margin. He is confident I should have radiation, which I expect anyway.He is considered an excellent surgeon and does 99% breast work so I do know I"m in good hands.

I'm less than one month into even finding out I have cancer so I'm still unable to grasp some things.I asked today if I was "classic", mixed or pleomorphic ILC subtype but my surgeon said that question was best asked of my oncologist. I'll meet with him tomorrow for first post op. I also don't have my Onco DX or BRCA results back yet. My surgeon wants to see my BRCA results --- he's a surgeon and naturally thinking go after ovaries since I'm in my 40s and not post menopausal.  (Makes me worried he's already thinking mestatistis and he even mentioned I was a strong candidate for recurrence)  Hmm, I thought with the bilateral Mastectomy I had really cut down the recurrence probability. He said recurrence in lymphovascular channels rather than lymph nodes

 You all sound like you've been through Chemo. Can you share your stories about how that made you feel and if you were even able to work or, if you do work, did you take this time off because you were just to ill to really work full time?  I'm out on disability now but curious how much time is out on disability is the norm and almost mandatory for chemo / rads / etc?  Any thoughts.

 I hope you are all doing much better and have found positive or spiritual ways to move forward through this. My family and friends have been wonderful. 

Thanks Joyce, I will do that.

My Onc today said the worst part of my path report was I have angiolymphatic invasion meaning the cancer cells are present in the vessels and can flow more easily throughout the body regardless of whether the lymph nodes are negative or positive. My KI67 was 20 and with 3 lymph nodes added to the mix, Chemo can only help in my case.. This is my tipping point. They will do bone and CT scans week after next to see if it has travelled but even if not, chemo is in the cards.

 And I learned something new...even thought I don't have axtracapsulary extension I do have angiolymphatic invasion which are both not good.

Thank you Joyce.

I know everyone here is going through or has gone through this and it gives me peace of mind to know I have sisters and helpers in this process. I hope to be able to give back someday when I'm through this more and experienced.

I am making a ritual of cutting my hair between now and chemo. I will have fun with it. It's long now so I'll graduate up to a short bob then to the Halle Berry cut as one friend called it. 

Thank you beacon800.  I'm sleeping all the time and just toodling around the house. Taking it very easy, thank you for asking.

I looked into Stanford but it was so hard to get an appt. that I decided to go with my local hospital and cancer center that is closely affiliated with Stanford - share surgeons, Oncs, etc.  If my PT/Bone Scans come back next week showing metastatic beyond what they've already found I'll head to UCSF. I'm staying very positive that the buck has stopped where it is, and chemo/radiation/anti-hormone treatment will work, but always ready to expect the unexpected. 

You were very smart to go with the bilateral MX early on. Everyone has said they regret not having a bilateral mx with ILC. I didn't think twice about it. I don't want to go down this path again.

Best to you 

Oh Nancy:

First I am excited you are doing well after 2 bouts of cancer! WOW!...... but  so sad to hear this news about your Mom. I think if I were in my 90's and had not done anything earlier about this I may choose to leave things alone. Just enjoy her company and smile, laugh and let her decide, I am sure the Doc will tell you both if she is able to go through with any surgery. I am so glad you have loved and appreciated all she has done for you-  she knows this and adores her beautiful daughter. Hugs go out to you both! 

I'm so sorry about your mom...you both are survivors, that is for sure.  I'm not an expert, but I'm guessing that there aren't too many surgeons who will do surgery on her because of her age and condition. I think chemo is out of the question as well. Try to get more answers as soon as you can and a second opinion at least in case you have options, and let her be part of the decision, since it may very well be the most important one of her life. There are amazing pain docs there who can take care of that and let her still have a good quality of life (not doped up all the time).  I have no other advice but empathy about losing a parent...my dad died in -97 and I miss him...but I think he' still taking care of me.  Hugs. This is a hard time for you.

Claire in Az

Thank you for your kind words.  I will find out about the large tumor tomorrow morning.  My mom is a strong believer in prayer so I will join her in that.  I just want her to be as comfortable as possible in her final years.  She is an absolute joy!

Hi Friends,

Took my mom for her ultrasound today and the radiologist insisted she have a mammogram too.  She said it was very painful on the tumor side and added that she was glad that it was her first and last.  After that, they took 4 needle biopsy's and said they will get the results in 3 days.  She is really sore tonight and has been icing it on and off every 20 minutes.  I feel bad that she is going thru all this.  I sure hope the pain goes away and she gets good news from the doctor.  I have a feeling she will be having surgery in the very near future. Her 93rd birthday is Sunday and she deserves a good one.  Just wanted to update you....thanks for caring:)

Nancy

I'm so sorry nancy!   I hope you get to speak with someone who can guide you soon.  The doctor needs to clearly explain the risks and benefits of surgery vs. doing nothing.  The risks of surgery are pretty clear, but you need to know if there's a risk of the tumor breaking the skin (very painful and distressing) if it's left alone.  If it's ER+, maybe you could consider trying an AI to see if it shrinks the tumor (possibly safer than surgery?).  Either way, I hope they can keep your beloved mom comfortable throughout.