Cathespin D

[Nedra]

Hello
I am newly diagnosed, one week after surgery, HER2 (100% expression), ER-negative, PR-negative, with p53 overexpression, Cathespin D (100% overexpression). Cathepspin D is apparently a predictor of possibility of distant metastases. Have any of you ever heard of that? Anyone heard of p53? Is that measured in the USA? (I live in Switzerland).

I posted a paper, in which I found the definitions of all of these parameters, and none look real positive. I am just now undergoing diagnostic tests for metastases, so I don't know that status yet.

Comments are invited, please. Thanks to whomever, for creating this site. I have learned a lot here.

Very best to all of you, with compassion and sympathy.
Nedra

[sarah]

Hello Nedra,
I am definitely NOT the best person to answer this but I found some information but it's from 1999 when I was first diagnosed and many of these things were bad for me also. In 1999 I wasn't given Herceptin so that's how much things have changed for the better and I'd asked the oncologist about it since I was so HER2+++ So a lot has changed since then but I do agree in knowing as much as possible so that you can ask what can I do about this and that. When you read the stories about people on this site you realize that inner strength is a powerful treatment. I hope this posting doesn't freak some people out as I said many were bad for me and it's 7 years later. I think the HER2 and ER status is the most important and they have treatments for them. here's what I found:



Epidermal growth‑factor receptor (EGFr) All cells have receptors that are 11 switched on" by growth factors telling the cell to multiply. altered cells, the receptors cause the cells to multiply uncontrollably. About half of breast‑cancer cases have altered receptors.


Ki‑67 In simple terms, this measures the speed of cell growth and division.

S-phase The S-phase test how quickly slowly divides also cks DNA - diploid(better) versus aneuploid (bad)


cathepsin D Patients with low levels of the enzyme cathepsin D and positive axillary nodes invariably outlive those with high levels of cathepsin D and negative nodes.



p53 This is a gene mutation that is known to be present in about half of all breast cancers. An abnormality of p53 gives an increased risk of ovarian and bowel cancer as well as breast cancer. When the gene is normal it restricts cell growth;

[Christine MH-UK]

Hi Nedra,

It is tough having bad prognosis factors, but it is important to keep in mind that the odds can't tell you what will happen to you, especially if the scan results come back clean.

I had really bad prognosis factors, but I am still around, NED, nearly three years later. The important thing if you're high risk with stage IIIA, is to have appropriate and aggressive treatment. There has been alot of progress on her2 positive breast cancer in recent years and chemo makes a big difference for er-,pr- cancers. I think there was some suspicion that taxanes make a big difference for patients with broken p53 tumor surpressor genes.

There has also been alot of progress with secondary her2 breast cancer, although not as much as with early her2 postive breast cancer.

I hope all goes well with the scan.

Best wishes,

Christine

[Nedra]

Dear Christine
Thank you so much for your reply. I was diagnosed two weeks ago, and since then my head is swimming, sometimes in information, sometimes in confusion, and always in sadness.
I appreciate your support, and positive outlook. It really means a lot.
All the best,
Nedra

[Nedra]

Hi Sarah
I hope I have hit the right button - I am new to this site - new to the diagnosis. I truly appreciate the support I have received. It is hard to remain positive in the face of such an unfavorable diagnosis, but ready all of these stories gives a lot of insight into what other women have faced, and thus it brings courage.
Unfortunately I do have high levels of Cathespin D and negative nodes.
Thanks again for your input, it really helps
All the best,
Nedra

[sarah]

Nedra,
So was/am I high on cathespin.
I was told at the time that these things were more important if it's invasive but remember the chemo and radiation are given to kill the cancer and hopefully it won't come back.
I'll be interested to know if you learn anything new.
I believe in trying to be as informed as possible and making a list for the oncologist to answer and then going through the list.
Also remember that having invasive HER2+ 20 years ago was deadly but now because of Herceptin and other drugs coming on line, I've read it may be better than being a triple negative so times and drugs change but fight for everything you think you need and to understand anything that worries you and go with a good friend to your first appointments and tests and treatment until you are comfortable.
The positive thing about this disease is that it is so well understood by doctors and has so much research aimed at it because unfortunately so many have it.
Once you start your treatment, you'll get into a routine and you'll feel good knowing you're doing something to fight this horrible disease.
This is a great site with some amazing men and women on it with great knowledge and they'll tell you that you can lick this thing.
all the best,
courage
sarah

[Hopeful]

Nedra and Sarah,

I am unfamiliar with testing for Cathespin D. Was this a standard test your pathologist performed on the tumor, or did you or your surgeon specifically request it?

Nedra, I am sorry to hear of your diagnosis. This forum is a great source of information and inspiration. We are all fortunate (a relative term, here) that the her2+ factor has become the "hot" issue for research and targeted treatments today. Please do not lose hope.

Hopeful

[AlaskaAngel]

A friendly note, in case others are trying to look it up... it is "cathepsin".

AlaskaAngel

P.S. Nedra, I just looked at the article you posted... and was amazed to see it spelled in the article as cathespin... so I went to my medical dictionary to be sure... and it uses the spelling "cathepsin". No wonder it is confusing!

AlaskaAngel

[Nedra]

Sorry, yes, it was a typographical error. Thanks for your correction.

[Nedra]

Hello Hopeful
I do believe it is a standard American test as well, as there are several American papers on the internet about it. It is used as a predictor of the tumor's ability to metastasize. I find it very scary because mine is 100% overexpressed Cathepsin D.
Kind regards,
Nedra

[Nedra]

Hi again Hopeful
Also, I posted a paper (on that section of this site which is for papers) which explains several terms used surrounding breast cancer terminology, it is from the Newport Cancer Center, which is an American place. That is how I found out that they use that for predicting possibility of metastasis.

Nedra

[tousled1]

Nedra,

My pathology report doesn't list cathepsin although all the other indicaors on my path report indicate a poor prognosis.

HER2 positive by FISH
Ploidy/DNA index: Aneuploid/1.61
S-phase: 24.2%

Try not to get too wrapped up on the pathology report. Center your attention now to a treatment plan. You can and will beat this dreadful disease.

[Nedra]

Hi Kate
Thanks for your support. You are right, I was really caught up in the path report. Now I am three weeks post diagnosis, one week post surgery, and feeling better and stronger. This support group has helped me a great deal. I wish you all the very best, and I am amazed that you are so positive. Heartfelt thanks to you.
Kind regards,
Nedra

[SusanV]

Hello everyone,


Just back from Chemo # 2 and I asked my onc about testing for casepin D. His answer was that this was a test that was done more in the early 1990's, and less often now, and it is not done here in the Hospital where I am getting treatment. (Magee Womens Hospital) University of Pittsburgh Medical Center Cancer Center. He said other things better guide them for prognosis, to include node status, tumor size, poorly differentiated, Her 2 status, er/pr status and I think he mentioned one other thing. I will keep thinking, recheck my notes and post if I think of something.

Just wanted to let you know what my onc said about it.

Love to All

[G. Ann]

Hi Nedra,

So many adjustments in the beginning. For me as time went on, it went from tailspin time to "I can do this...if I have to." Good suggestions to focus on the treatment at hand. Pathology reports are helpful to decide on treatments and to be aware of all the options available.

Early on I tried to live in what was happening that day only and not to spend too much time thinking of 6 mos or 12 mos later. Some days were better than others. I mentally imaged that I only needed to get up and put one foot in front of the other. The rest would be taken care of somehow and some way. If anyone has every walked a labyrinth, you know you can't visually see the way on the path when you begin...so many twists and turns to get to the center. Then you get to the center and have to come back out again. There's only one way in and out. At times you can feel lost, but you keep moving forward.

We all stand on the shoulders of those before us. This group is the best all the way around for good information and support. I'm in awe of the wisdom, kindness, and generosity of spirit.

G. Ann

[Nedra]

Hi Susan
Yes, here in Europe they do all the things you mentioned, but they also do Cathepsin D status, as well as p53 status. I guess it doesn't matter, except to get one really depressed if, like mine, it is high (laugh). I am three weeks post diagnosis, and if you read the post by G. Ann, which is excellent, I am finding my thinking is now trying to be more along the lines of hers, which kind of keeps me out of the quagmire of despair. Thanks and all the best to you
Kind regards,
Nedra

[Nedra]

Dear G. Ann
What a wonderful message, thank you. I am trying so hard to achieve exactly what you describe. For the first two weeks I did nothing except study every parameter, try and read and understand all the scientific articles I could find - I spent hours on this site as well, and drove myself into deep, deep, sadness. Not being able to maintain that status, I finally said "enough", and now I am aiming for one foot in front of the other. Thanks for an inspiring message.
Kind regards,
Nedra

[MJo]

Nedra -- your last post made me smile. In my support group, one Her2 survivor jokes that after her diagnosis she practically tried to become an oncologist. I too did a lot of reading about BC and scared myself silly. I then took some time off from the reading. After a few months, my fear of the disease lessened and I began to look for information again to help me fight. People on this board are right ... to live well each day is what's most important. Much love ... MJO

[Nedra]

Dear MJO
Thank you for your post. I guess there is some kind of process that we undergo. I even read about the process of grieving, because I felt I was grieving! However, I just cannot maintain a constant state of depression; I just need to get on with it. It has been three weeks today, and each day is getting better. Yesterday I had a total body bone scan and Gott sei Dank, no metastasis.
Tell me about yourself - it says you are a senior member, but you just joined this year. What makes a junior member, and a senior member? Length of time, or age, or ?
Thanks again, and it is nice that we can smile once in a while!
Kind regards,
Nedra

[Hopeful]

Nedra,

My PCP, who has been involved with my diagnosis and treatment from the beginning, has consistently told me that there are no "right" or "wrong" answers about bc. His advice to me has been to do my reasearch, make a decision on treatment, and, once made, never look back and never regret the decision. This sounded very difficult to me, until I finally began treatment. I am finding his advice to be the best I have received so far. I remember how far off this feeling seemed to me when I was dx back in June, but mentally I feel stronger every day. You will, too. Take care.

Hopeful

[SusanV]

Nedra,


You are on the right path to a healthy mindset about all of this. In my experience the early days have been by far the most difficult. I think it is because there are soooo many "unknowns" swirling around in your head.

I am 55 days out from the day I heard the words you have cancer.... I am also done with 2 treatments of chemo, which hasn't been bad for me at all by the way, had a port put in,...Lost all my hair, But remember that it all grows back, and am back to work living and enjoying the small things that make life grand each day. Things will get easier for you too, I promise. You just need to get your treatments started, know what the plans are for you from your onc, and just put one foot in front of the other.

AND for me Nedra, I have found out that I am not sure what is more important to me, my treatments, or the women in this support group who give me a world of information, hope, and an outlet that I am unable to really achieve in any other way. Stay with us through your journey !

Love to you !

[MJo]

Dear Nedra...I don't know how I became a senior member. I don't know if it was the length of time I've been logging on or the number of posts. One day I was listed as a Junior Member, the next as a Senior Member. Ladies, does anyone know the protocol here? As for me, I was diagnosed in October 2005. Tiny tumor (1/2 centimeter, which I thought was similar to 1/2 inch until I looked at a ruler) and no lymph node involement. Lumpectomy so I still have my girls. A few years ago I wouldn't have received Chemo. Makes me shudder because I took the Oncotype DX test and scored in the high risk category for recurrence. I think all of us Her2s are high risk for recurrence so we should all take chemo and Herceptin. As a matter of fact, I get Herceptin today. Someone used the phrase "High on Cathepsin." That's a new one on me!!! Signing off...MJO