Herceptin Forever???

Dakini52 · 01-18-2013, 03:14 PM

I'm a little confused and am hoping someone here can help me out. I had a local recurrence to the chestwall 3 years ago. Had surgery, radiation and have been on Herceptin since then. My oncologist recommends that I remain on it indefinitely. I have only heard of this being done when a person is Stage IV. I'm looking for information that might help me understand this. Although I love my oncologist, he recently told me that when he was in medical school any recurrence was considered metastatic. This is not at all what my research of the subject tells me so I need your help

KDR · 01-18-2013, 04:40 PM

If I understand your post, you have HER2 positive breast cancer and it spread to your chest wall. You had surgery and then recurred again on the chest wall. I'm not into staging, and I say that fervently as so many S4s rid themselves of breast cancer and so many "early" stagers wind up S4. Because we have the single-cell theory, cancer should be looked at systemically, as a whole.

Yes, I think you should be on Herceptin as long as you can.

Best
Karen

Midwest Alice · 01-18-2013, 04:53 PM

Hi, I'm on Herception for ever too.

Joan M · 01-18-2013, 05:07 PM

Your recurrence was considered local because it spread to the chest wall, but it has not spread to an organ, which is considered distant spread. Your oncologist sounds progressive to me, since he/she treated your chest wall spread with surgery and radiation, which immediately rendered you NED, or no evidence of disease, and allowed you to take only Herceptin and not chemotherapy, as well.

Sometimes, the cancer can start in the chest wall and spread to other areas, and often times we unfortunately don't know whether any of the cancer cells escaped into our system. It's very fortunate that you are NED and able to take only Herceptin and no chemotherapy. I think your oncologist wants you to stay on Herceptin for awhile to ensure that the cancer stays away.

How long should you stay on it is anyone's guess. I wish I had a crystal ball! If it were me, I wouldn't take the chance just yet of discontinuing Herceptin.

Joan

Dakini52 · 01-18-2013, 05:24 PM

Thanks so much for the response. I was originally diagnosed in 2006, and after surgery, radiation, chemo and Herceptin went 3 1/2 yrs before the recurrence in my chest wall. I have been on Herceptin for 3 years now and am still status NED. My question I guess is because I keep seeing the news that 1 year of Herceptin is all you need and am trying to see how that applies to me. Joan, I believe your advice is wise since I have had the recurrence and will continue taking my 3 week rounds of Herceptin and be grateful :-)

Dakini52 · 01-18-2013, 05:30 PM

Well, I was IIB, 5cm, 2 of 10 nodes so it is wonderful to hear that others are doing so well!

Dakini52 · 01-18-2013, 05:33 PM

The initial breast cancer didn't spread to the chest wall; that is just where the recurrence was located. I'm convinced to continue on with the Herceptin :-)

CoolBreeze · 01-21-2013, 06:10 PM

You don't have a metastatic recurrence and aren't stage IV. What you are is a person who doesn't ever want to be Stage IV, so if herceptin will accomplish that, then I say go for it. It may be a few years down the road you can take a break but for now, I'd just be grateful you have this chance!

Dakini52 · 01-22-2013, 08:21 PM

Thank you for the wise advise :-)

KDR · 01-23-2013, 08:24 PM

https://www.caring4cancer.com/go/bre...ast-cancer.htm

Stay on Herceptin! Good advice from your oncologist, but bolstered by the research we do as a team. Stay positive.

KDM