Stage 3, pathology question

Nursie · November 2014

Does anyone know what this means? On my pathology report it says one area is suspicious for extranodal tumor extension. The doctor didn't mention this?

Good news though, i got my drains out today and also my first "filling" of my expanders.

Thanks for any advice you have about the report.

sbelizabeth · November 2014

Nursie, "extranodal extension" is when cancer cells are seen growing outside the lymph node itself, having extended beyond the capsule of the lymph node. It's not an uncommon finding in us "stage-three-ers" Try not to worry. Whatever stray cancer cells that might be lurking around will get poisoned by chemo and then zapped by radiation.

Great news on the drains! Getting drains out always makes me feel like I'm way down the road to recovery.

Rest, take your medicine, get enough sleep, and just know that "breast cancer" is something you used to have.

Nursie · November 2014

thank you so much. At first they didn't thinkbi would need radiation but now they are talking about it. I guess this is why? Thanks for your help!

sbelizabeth · November 2014

Radiation is a staple in breast cancer treatment, particularly for "locally advanced" diagnoses. This is when cancer cells have moved beyond the breast and into lymph nodes that drain the breast tissue. According to statistics, adding radiation treatment significantly improves outcomes for "node positive" disease--when lymph nodes show evidence of malignancy.

Glad to help--sorry you're here, but you WILL get on the other side of this big speed bump!

Nursie · November 2014

thank you. I spoke to my oncologist about it today and she said it means that the cancer broke through the shell of the lymph node and into the surrounding tissue so we will most likely be doing radiation after the chemo. She said the risks of radiation include lymph edema and so we have to be careful with the dose.

She said even with all this, double mastectomy, chemo and radiation, there is still a 20% chance of recurrence. Is that what you guys are hearing too? That doesn't sound like very good odds.

Lily55 · November 2014

80% chance of not recurring is good odds, seems pretty good to me at stage 3.......

YATCOMW · November 2014

I had the cancer bursting out of several nodes.

I am over 10 1/2 years out and doing fine.

I think you just have to live like you will be in the 80%..... you don't want to give cancer any more of you than it already has:)

Jacqueline

Anonymous · December 2014

Jacqueline - you're a great example for us stage 3's !! Be well - Shelly

Moderators · December 2014

Indeed, Jacqueline, you are a great inspiration! Thanks so much for being here, and for sharing!

lkc · December 2014

Jacqueline. You are awesome.

Anonymous · December 2014

Nursie, I am so sorry you are going through this crap. I remember being right where you are but promise you, you will move past this and reclaim your life. I also had extranodal extension and many of my nodes were matted together. I had a radical mastectomy on that side and a simple mastectomy on my clean side. It was a given from the beginning of my treatment plan that I would get zapped with rads. Study after study indicate a big benefit to those of us with positive nodes. I threw everything at this crap that was offered to me and would have done more. In my case, nothing would have been considered overkill.

Jacqueline, AMEN!

sbelizabeth · December 2014

Nursie, dear sister, it's time to build a "delete" button for your brain. When your thoughts wander into the dark side..."these odds don't sound great...what if..." HIT THE DELETE BUTTON! Seriously, I learned to consciously think "delete, delete, delete" and move on.

Jacqueline, you nailed it. Thanks for your story of hope.

caaclark · December 2014

I also had cancer spilling out of nodes. I remember being terrified about that for several years. I would read my path report over and over again and freaked out each time. Not really sure why it took me so long to discontinue reading it or why I felt compelled to read it. I was diagnosed almost 9 years ago!! Yes! NINE YEARS ago!!! So far so good.

Kay_G · December 2014

I also had extra nodal extension. Over three years for me. Great advice Jacqueline and sbelizabeth! I had a mastectomy and radiation. I did end up with lymphedema, but got it from the surgery before I even started radiation. Best of luck!

bride · December 2014

Yes, radiation does increase your odds of having lymphedema. But there are things you can do to lower your risk. My RO started me in therapy with a certified lymphedema therapist (CLT) while I was still in rads. I've been told to keep my BMI under 23, be wary of infections in the affected arm, and don't wear any jewelry on the bad side. Anyone who has had either a SLND or an ALND carries some risk of lymphedema forever. But 80% of those at risk don't develop it. Think of it as just another part of your treatment -- one you can have a bit of control over. Assume you will not have lymphedema or a recurrence, do what you can to make that true, and please believe there is no reason why you willhave more bad things happen. You're making it through a very bad thing right now. Yes, it's easy to fall into the slough of despair, but it's a lot more fun to enjoy life and remember the odds for good things are in your favor

mary82965 · January 2015

Hi Everyone - I am new here. I have been reading the posts on and off for the past several months. I was diagnosed back in late June and had 6 rounds of chemo (Taxotere and cytoxan) before my surgery. I opted for the bilateral mastectomies and was diagnosed with estrogen and progesterone postive her2 negative from my initial biopsy and then again during the mammoprint. I had surgery on Jan 7th and got my path report back yesterday and my her2 was inconclusive on the report. I am absolutely freaking out at this point. Has anybody ever heard of that test giving false or inconclusive results? They are redoing the test now and my oncologist said that I had a 70 percent chance that it was just a false reading but if it is positive now I will have to have herceptin for a year. I am just so heartsick right now because I thought the only thing I had to go was the radiation and the tamoxifin. I also found out that I had not one but four nodes involved but that the chemo pretty much wiped out three of the four. I feel like I have been kicked in the stomach and I don't even know the results yet.

Has anybody had herceptin? And how did they do with it?

I hate cancer - I hate what it has done to all of us- and I will never let anybody take this journey on their own.

Momine · January 2015

Nursie, Lily and others have said it better, but every day that you are alive and enjoying yourself is a win, regardless of odds. So the way I see it, the key is to enjoy myself, take care of myself and have fun. Also, I try to remind myself that the longer I stay healthy and strong, the better the chances that they will come up with new and better treatments. There is new stuff in the pipeline, so this is not a completely deluded hope. Instead of letting myself imagine the worst, I consciously try to daydream about having a recurrence and just needing a few shots to get rid of it for good.

Now, about that there lymphedema. You should see a certified LE (lymphedema) therapist ASAP. The sooner you get started on PT, the better. Even if you experience some swelling, early and consistent intervention can reverse it. I got lymph drainage massage every week or two all through rads and for a while after. I also wore an LE sleeve and gauntlet during rads. This was because I already had some swelling before starting rads. It was not extreme, but it was definitely there. It still acts up once in a while, but it remains a minor problem, and I am convinced that early intervention and my wonderful PT saved me from having it develop into something worse. You can also check the LE forum here on BCO. Some of the ladies there are extremely knowledgable and incredibly generous with their help.

Momine · January 2015

Mary, I had exactly the same thing happen, HER- on biopsy, chemo, BMX and then an iffy HER status on the BMX path report. My doc sent off for a more accurate test, which put me back as HER-, so don't get all depressed ahead of time. You may be wasting perfectly good worry When do you get results?

The fact that the chemo got to the cancer in the lymph nodes is excellent. In my case it shrunk the tumor, but barely touched the nodes.

Annette_U · January 2015

Nursie, I was told I had a 30 % chance my cancer would return and Doc just shrugged her shoulders after surgery when it seemed I had a better outcome after pathology. She said I still had a 70% chance I'd be cancer free in 5to 10 years. I Believe I have a 0% or 100% percent chance it will return in my lifetime....unless something else kills me first!

bride · January 2015

Mary,

I have 3 more Herceptin infusions -- I will have had a full year of it. It's very different than chemo, other than a perpetually runny nose, I've had no issues. Yeah, I did have echos every 12 weeks, but that's no big deal. You can get Herceptin as part of your chemo and while you're doing rads. I'm having it as I take Anastrozole, I'm guessing you could take Tamoxifen while on Herceptin as well. Honestly, I'd be more active on the lymphedema-- I started with a CLT while still doing rads.

But hopefully you'll not need Herceptin at all.

bride

Stage 3, pathology question

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