Breast Cancer and Perineural Invasion

Posted by katrina123 @katrina123, Aug 30 10:19am

I had perineural invasion with my breast cancer and I am not able to find very much information on it. All I am able to find is that this is not good when it happens with other kinds of cancer but I am not able to find out much about perineural invasion and breast cancer.

Does anyone know more about this?
Thanks
katrina123

Interested in more discussions like this? Go to the Breast Cancer group.

I did find an article about it behind a paywall but I will tell you what I could read. Firstly it is incredibly rare for breast carcinoma to do this, which explains why there isn’t a lot of information.
The treatment of choice appeared to be cytoreductive surgery and HIPEC chemotherapy. This is a way to administer chemotherapy directly to the peritoneum. If I were facing this, I would absolutely seek out the best oncology center I could find and afford.
Do you live close to a large cancer center or teaching hospital?

REPLY

@katrina123 Can you please expand a bit more on your situation – symptoms, how the diagnosis was made and thoughts on treatment. Just like Chris above (who is excellent), I did some checking as well. Still not exactly sure where you breast cancer spread. FYI mine went to my skin subcutaneously. Oral meds kept it in check. Then 18 mos later went to my peritoneum and omentum, and stomach, etc and had terrible nerve pain. Did combo of chemo and other meds and now back in check a year later. I agree with Chris – do you live somewhere with good access to top notch up to date care?

REPLY

I had low grade adeno squamous metaplastic carcinoma. My pathology showed presence of perineural invasion of large nerves showing both epithelial and myoepithelial component with invasive carcinoma. The tumor was 2cm and I felt it in my breast 2 months after I was told my 3D mammogram was negative for cancer. (I have dense breasts.) I had to convince doctors to do an ultrasound. It has been 2 years and 8 months since my lumpectomy. My oncologist orders either an MRI, ultrasound or a mammogram every 3 months. My cancer tumor was a combination of glandular along with skin cancer in my breast. So far we have not found cancer any place else but I do worry about this striking perineural invasion of large nerves diagnosis.

I am so sorry that you have been through so much. I am glad that you are doing O.K. now.

REPLY

Hi Katrina, I just found out that I also have perineural invasion after my lumpectomy 🙁

So far, I found that this invasion describes an aggressive tumor with a higher risk of occurrence. Aggressive treatment is needed.

I do have an appointment with my oncologist on Tuesday. I will see what he says!

Best of luck 🤗🤗

REPLY
@mai1982

Hi Katrina, I just found out that I also have perineural invasion after my lumpectomy 🙁

So far, I found that this invasion describes an aggressive tumor with a higher risk of occurrence. Aggressive treatment is needed.

I do have an appointment with my oncologist on Tuesday. I will see what he says!

Best of luck 🤗🤗

Jump to this post

mail1982….
Thanks for your response.
I am sorry that you also had the perineural invasion. What was the cancer that you had? Could you possibly let me know what your oncologist has to say about it? It's frustrating to be told my cancer attached to a large nerve but I have little understanding of the ramifications of this.
I have been told that this cancer is likely to recur in the same location but that is about all I have been told.
Katrina

REPLY

Hello Katrina,

I have invasive Ductal Carcinoma, ie Breast Cancer.

I have discussed the perineural invasion with the surgeon and all she said “ We took the tumor out, and we have clear margins”. So my understanding is since they have clear margins the nerves slights outside the tumor didn’t contain and cancer cells.

I hope that helps. Best of luck 🤗

REPLY
@katrina123

mail1982….
Thanks for your response.
I am sorry that you also had the perineural invasion. What was the cancer that you had? Could you possibly let me know what your oncologist has to say about it? It's frustrating to be told my cancer attached to a large nerve but I have little understanding of the ramifications of this.
I have been told that this cancer is likely to recur in the same location but that is about all I have been told.
Katrina

Jump to this post

I apologize for misreading your post initially and thinking it had gone to the peritineum. Truly remorseful, the last thing you needed was a bunch of information that didn’t really pertain to you.
Worrying about that thing growing back is something we all do, unless it does, then we have new worries. I try not to let the worry of tomorrow steal my joy today. Have you ever asked your doctor outright about the ramifications of this thing?

REPLY
@mai1982

Hello Katrina,

I have invasive Ductal Carcinoma, ie Breast Cancer.

I have discussed the perineural invasion with the surgeon and all she said “ We took the tumor out, and we have clear margins”. So my understanding is since they have clear margins the nerves slights outside the tumor didn’t contain and cancer cells.

I hope that helps. Best of luck 🤗

Jump to this post

mail1982,
Did your doctor actually say that since you had clear margins that the nerves outside the tumor didn't contain any cancer cells or was that something that you assumed? Wouldn't they have to biopsy the entire nerve to know for sure if the cancer had spread? Just wondering.

For anyone who knows more about this please jump in.
Thanks …..Katrina

REPLY
@auntieoakley

I apologize for misreading your post initially and thinking it had gone to the peritineum. Truly remorseful, the last thing you needed was a bunch of information that didn’t really pertain to you.
Worrying about that thing growing back is something we all do, unless it does, then we have new worries. I try not to let the worry of tomorrow steal my joy today. Have you ever asked your doctor outright about the ramifications of this thing?

Jump to this post

From what I have been told there has been little research due to the rarity of breast perineural invasion. Perineural invasion of other cancers is a serious problem.

REPLY

I had perineural invasion for my first BC (IDC) 2.5 yrs ago and it was one of the arguments of the radio-oncologist to convince me to undergo radiation (I was resisting, since was early stage and I am in older age group). I think I asked at the time whether the cancer cells could spread thru the nerves and she said it was a possibility.
I have always thought the perineural invasion could explain why I felt pain which is what led to the discovery of the tumor. A mammogram did not reveal it, and I was told it was not palpable.
Otherwise, I was given very little info about what the nerve involvement might mean.

REPLY

cashemire,

That's interesting what you said about pain because I had terrible pain in my breast and I recall how uncomfortable the seat belt was on my breast. Some people think that breast cancer is not painful but they are so wrong.
Isn't it frustrating to not know the ramifications of the nerve involvement? It's been around 2 1/2 years since my surgery and radiation and I still have deep nerve like pain in my breast that comes and goes.
Now I have developed transient lymphedema in my breast. I didn't even know that you could have breast lymphedema.
Thank you for telling me about your experience. I appreciate it.
Katrina

REPLY
Please sign in or register to post a reply.
  Request Appointment