33 positive lymph nodes

Cristi23

Hello,

I am needless to say extremely concerned. I just had my double mastectomy/reconstruction done on the 17th. Got the results of my pathology report and they removed a total of 35 and 33 were positive? Anyone else had anything similar? I feel like I was just given a death sentence being I am 35 with 3 small children. Please help me if you can.

Hopeful82014

Cristi, I've not had that experience so can't address that. I do want to extend my support to you at what is clearly a very difficult time for both you and your family.

33 nodes isn't good news, of course, but it's not a death sentence. You do have a tough road ahead of you as that will almost certainly mean chemo and quite possibly some radiation. That's a lot to handle when you have your hands full with three little ones. It can, however, be very effective.

Much depends on your tumor's characteristics - Hormone Receptor status and HER2 status. (If you edit your profile to make that information visible I'm sure you'll have lots of women jumping in with support and information.)

You've been through a lot already, between your surgery (which was a LOT for your body to go through) and the shock of your pathology report. Try to get some rest. I'm sure you'll start talking with your MO shortly about your treatment plan and will start to see the darkness lift at that point. In the meantime, you're in my prayers, if that's o.k. Please keep us posted as you have time, and come here for support. (((Hugs)))

dltnhm

Cristi-

You have been hit with a lot. I am so sorry you are facing this at this stage in your life. It is never easy but going through this with young children presents its own set of unique hurdles to deal with and overcome.

It appears you were going to have neoadjuvant chemotherapy in the Fall. Did your MO change your regimen to one that would be easier on your heart or was it totally postponed? If you had the chemotherapy - did your tumor respond to it with a reduction in your tumor size? Have you met with your MO to discuss what his/her plan is for you going forward?

There are young moms who've done well with chemotherapy before and after surgery. There are also some threads where women who are younger and facing similar challenges share with one another. I'm sorry I cannot post links from my phone right now.

Hang in there dear one. Try to breathe and if possible - get some sleep. If you are having difficulty sleeping tonight - give yourself a break from research at some point.

I'm praying for you that you will be able to find peace in the midst of the storm: that others who've faced similar/the same diagnoses come forward to reassure you and share experiences; that you will be directed to the best information needed; that you will receive timely information from your MO and a plan of attack from your current MO or another.

Meow13

Hi Cristi, I was hoping stage 3c'ers will respond. I was thinking of one lady who had 20 positive nodes out of 21. She just celebrated her 8th year cancerversy.

BUMPING

ThreeEyedRaven

Hi Christi-

We had surgery on the same day. I had a lumpectomy and node removal, 7 out of 26 with cancer. Although it bumped me from stage 2a to stage 3a, I don't actually think it is going to change my treatment plan. I'm still a a bit freaked out, but I did the surgery first so that I would have more information. Does your pathology report change what you were going to do treatment wise? Good luck with whatever you end up doing!!

Cristi23

Thank you so much for your replies. I did go through 8 chemotherapy treatments of ACT (Adriamycin/cytoxen/taxol) I had just had my last infusion on January 22nd. To me that just adds to the confusion I have. I feel that with me just getting done with chemo that there should not have been so many positive nodes. I will update my profile for everyone to be able to see everything. I was also told that radiation is a must with these results.

Hopeful82014

I hadn't realized earlier that you had already done 8 rounds of ACT prior to surgery. I can see that the path report must have you thoroughly confused. I hope you won't have too long to wait before you can sit down with your MO (and the rest of your team) and start sorting this out. I also hope you have lots of loving assistants nearby during your recovery. I frankly can't imagine how you've been able to juggle chemo, surgery and 3 little ones. I am truly in awe.

Nancy2581

Cristi I don't have any words of wisdom but just wanted to offer some support. Big hugs-I am thinking of you

Nancy

Cristi23

Thank you all so much. I will be going to see my MO on Monday morning at 9. I believe i am still in a state of shock. I thought that once we had the surgery and everything was done we would be done for now and I could move on and now I just dont know what to think.

Holeinone

Cristi, so sorry, NOT fair, being, a young mom.

Is your dx Invasive lobular ?

Your MO will guide you, I am assuming radiation would be next. Maybe getting your ovaries removed and then taking Arimidex or Tamoxifien. Physically, the worst is behind you, emotionally, takes forever.

Keep us posted.....

Hopeful82014

Cristi, I'm glad you have that appt. Monday. In the meantime, I hope you know that you have many supporters on this board. Take care.

Cristi23

Thank you so much. Yes i do have invasive lobular. Does that make a difference? What would removing my ovaries do to help? I am all so new to this still I don't understand a lot.

hummingbirdlover

Cristi, I'm so sorry you are dealing with this! I wanted you to know that my mom was diagnosed last year with ILC and had more than 20 positive nodes removed at surgery. She had BMX, chemo and finished with radiation in October, just as I was being diagnosed with my BC. She is doing great! Hang in there.

Cristi23

Thank you so much for telling me that i really appreciate it. This has changed my treatment plan. I was only looking at 6 weeks of radiation after my surgery. Now it seems they are planning on me having more chemo along with radiation. So this will be my second round of chemo that scares me but my faith is keeping me strong.

Holeinone

Cristi, I have invasive lobular also, my surgeon only took 7 nodes, 6 were bursting open, matted with Cancer growing on the outside of them. I wonder if he had taken more, what we would of found.

I was 58 at dx, I had a hysterectomy when I was 45. You are so young, that you have many years until menopause. That meaning your body is producing estrogen. Your Cancer is estrogen fed. Some ladies get shots to stop ovalution, some have the ovaries removed. Someone else, will jump in & most likely explain it better. Like I mentioned in my previous post, you will want ( need ) to go on hormone therapy ( to block it ) for 5-10 years. Sorry if I am not explaining this well. Believe me, I knew nothing until I was done with tx. IPAD slow, BBL....

rozem

Cristi -

I remember speaking to my MO about what would happen if I had a less than optimal response from neo adjuvant chemo.  She said that in some cases they would refer you to a clinical trial that can be done post chemo.  You may want to ask about that.

Also based on the SOFT study results and your age ask about ovarian suppression plus and AI -this is most likely what they will recommend and has shown to have better outcomes than tamox alone.  Remember that hormone therapy is a very powerful part of your adjuvant treatment

beth1965

Christi - hi I have Invasive Lobular Cancer too. I am stage 3C.  I had 17 cancer nodes. I had 2 tumors in my nodes 1 cm and 2 cm and the broke open and I think its called extracapsular or something like that. and I had a 9+ cm tumor in my breast. Mine is not exactly like yours but was a pretty tough way to start as well. I find most ILC ladies do not get found early and lots of us have a lot of nodes or large tumors or both as ILC is sneaky and not always detected early. They found my cancer 3 years ago but said it was probably there about 8 or more years undetected since my 30's.

I had surgery double mastectomy  the same chemo as you and the same amount and radiation. I am on hormonal therapy now. Anastrazole. I did not have my ovaries removed but they did shut them down. It has taken them awhile to find something that would work as my body was not co operating but finally is okay.

I am 95 % er +  pr+  her2 -  because I am 95% estrogen positive it was one of the most important parts of my treatment. They gave me tamoxifen then needles for months then anastrazole. They had said if they could not make my ovaries shut down they would have to remove them.

I was told I will probly always need treatment but that's fine if im still alive so as long as it works I will do it. I have hit 3 years now since diagnosis and lead a pretty normal life right now.

On this site you will find many woman with the same amount of nodes as you and many been alive along time much longer than me - its a glimmer of hope to me I hope it is to you too.

If you have any questions please feel free to message me.

Take a peek at the ILC board or stage 3 board in your drop down menu I am sure you will feel better after hanging around there awhile

Hugs to you -Beth

Tomboy

Christi, hi, I had lots of positive nodes! And yeah, it worries me too, cause not too many of the women on here have that many +. What is strange to me is, I saw you did taxol AND adriamycin at the same time, and i didn't think they ever did that. I don't think i have seen that before on here, I wonder why? I insisted I didnt want to do chemo before surgery, cause I didn't want an infection! I knew so so little goin in. But I suspect it woudnt have changed my nodal status very much. my nodes were matted together, bigger than your fist. And i never felt a thing there, but my hand did find my little tiny one in my breast! Go figure. I guess i didnt know about the ACT that you and Beth both had. So I am still here and learning. My god you are so young for this. i am so sorry sweetheart, but you will certainly be happy you found BCO, the women here are astoundingly terrific. Good luck be with you.

Cristi23

Thank you all so much 😊. I did do the Adriamycin with Cytoxen followed by the Taxol. This is a huge amount of stress for us. I am feeling slightly better now that I have had some in the medical field tell me this can be treated. I still have Fight in me and I will not give up 😀 I Will also go check out some of the other boards as well.

Tomboy

It just confused me, cause your dx said LCIS, but it must have also been ILC, right? I'm alive!

Cristi23

How can I send you a copy of the description of my final path report? Or are you on Facebook? There is a page called "Prayers for Cristi" that was made for me and also has that information.

Cristi23

Cristi23

I figures it out and I believe this will help you understand as obviously I am confused on some of these terms.

Tomboy

O, it did help, and yours is very much like mine. LCIS is not invasive, it means lobular carcinoma in situ, , that just means not invasive, thats what got me confused, sweetie, trying to figure out how it was invasive and not invasive. It means that you have both lobule kind, where the milk is made, and ductal, what is kind of the highway for the milk. I don't expect you to know all of this, I didn't know anything really, when I came here. i am glad you found us though, and you will see that the women here are pretty amazing and very helpful. If you want to know more about your kind of cancer, you can read the drop down menu on the left. it was just that it would be impossible for the tumor to be contained, and also be invasive. It should say somewhere on there, maybe ILC, or IDC? or both? Yours is very much like mine. it sounds like yours was very close to the skin. And the tail of spence is, like right under your collarbone, towards your armpit. It's like your breast is tear-drop shaped, and the pointy end is pointing up and towrd the outside of each breast, and that is why it traveled so easily to your axilla, or armpit. Can't believe I went my whole life without knowing that that was my axilla... Also like yours, my path report was just crazy... "the cells were very high grade, occasional very large and bizzarre forms. I actually kind of like that they used the word bizzare! Take care.

Trvler

I have been told I have elements of both lobular and ductal. I am trying to understand the ramifications of this as well.

Tomboy

me too, it just seems our breasts like to make cancer. in all kinds of ways.

Meow13

Hi trvler, i have both kinds idc and ILC. My onco said it is not an issue from his experience.

Trvler

Christi: How are you doing?

Cristi23

I am doing pretty good. I went and saw my Medical Oncologist yesterday. As expected she was very surprised at my path results as well but said there are options. She is sending me for another CT Scan with contrast on Monday. She also took blood work to check everything out to find the right treatment plan for me. She was wanting to also check to make sure that we are dealing with the same tumor and the HER2 status and all is still the same. Its so overwhelming to feel that we are starting all over again but I know it will all be ok 😊.

Trvler

I am glad you are doing ok.

Tomboy

As both ILC (Invasive Lobular Carcinoma) and IDC (Invasive Ductal Carcinoma) are not contained, like LCIS (Lobular Carcinoma In Situ) and- DCIS (Ductal Carcinoma In Situ). It's that invasive component that makes someone have to do chemo. If it was "in situ" that just means "in place" it's not contained any longer in the duct or the lobe. LCIS is always stage 0. So, on your tagline at the bottom of each of your posts, it just needs to be adjusted, thats all. It was that part that confused me, stage lllc can NEVER be LCIS. Its when it is coming OUT of the ducts and lobes, where LCIS turns into ILC, and where DCIS turns into IDC! I was concerned, because your doc should state clearly for you what you have, or I would be worried about over treatment. yours sounds more like: IDC/ILC stage lllc, grade 3, 33/35 nodes,ER+/PR+, Her2 neg. Sorry. I will crawl back now...