What Makes HER2 Positive Cancers Unique After Treatment?
 

Is it significant AFTER treatment that a cancer was HER2 Positive? Why would it matter if your cancer was HER2 Positive in the long run?

Re: What Makes HER2 Positive Cancers Unique After Treatment?
 

Because it tends to recur/metastasize more readily than HER2 neg cancers. Before Herceptin the prognosis for HER2+++ patients was pretty grim. Herceptin has helped to equalize the playing field. Having said that, it still is not a cure, HER2+++ early stagers can and do progress to Stage 4 but at a lesser rate than before Herceptin.

My case illustrates this. I had a Stage 1 tumor in my right breast that was NOT HER2+++. No chemo needed or recommended.

Then the HER2+++ tumor was found in my left breast. Now I needed the whole enchilada ... chemo Herceptin, etc. Even though it too was Stage 1. It is treated more aggressively in the beginning because it can spread more aggressively.

All early stage treatment is to hopefully prevent further spread/mets. There is no cure and no guarantee it won't spread, there are Stage 0 women here on this forum who later became metastatic.

Carol Ann

Re: What Makes HER2 Positive Cancers Unique After Treatment?
 

I am asking about AFTER treatment. How does it affect your chances to get another cancer or different cancer, ect. Do HER2 Positive cancer patients need to be monitered longer than other patients for example? What does it mean if your body expresses too much HER2 in the long run? What are we lacking or do we have an excess of something? For example, take 2 women that had and were treated for breast cancer 15 or so years prior. Does it matter the subtype of their breast cancer years after treatment? Are there certain illnesses that HER2 Positive are more prone too?

Re: What Makes HER2 Positive Cancers Unique After Treatment?
 

Spitfire, I apologize if I didn't explain what I meant very well.

HER2+++ cancers are more likely to return after treatment than the cancers that are not. That is what I meant in the beginning sentence. It isn't your body that lacks anything, the HER2+++ cancer cell over expresses the HER2 protein on the cell, which makes it replicate more quickly. I don't think anyone knows why some tumors are HER2 positive and others are not. The ones that are HER2+++ are in the minority, 1 out of 5 or so.

Any breast cancer can metastasize many years after initial treatment. But given that HER2 positive is considered more likely to come back, yes I would think it makes a difference.

Dr Slamon, who developed Herceptin, has said that Herceptin has greatly decreased the odds of HER2+++ cancer coming back, by about 50%. He spoke at a conference in Scotland not long ago and said that most will recur if it is going to happen within the first 2 or 3 years after treatment. Again, that doesn't mean it still can't happen after that point.

Additionally, cancer cells can switch from negative to positive, and vice versa. This happened to someone I knew ... their original tumor was HER2 neg, so no Herceptin. It came back metastatic in her liver HER2+++. There is someone on this forum, Michka from France (I think) who is metastatic but her tumor has mutated and isn't HER2+++ any more.

I have never heard that we HER2+++ ladies are more prone to any particular illness ... but that is a good question, maybe someone else has some info. And as a general rule, yes once you have been diagnosed with cancer, you are more prone to be diagnosed with other cancers as well. Whether HER2 +++ increases the raised odds or not, I am not sure.

Carol Ann

Re: What Makes HER2 Positive Cancers Unique After Treatment?
 

My Dr told me that if it came back it would come back somewhere else, ie. bone, brain, lung. I was stage I received the TCH treatment and I'm 6 yrs out.

Re: What Makes HER2 Positive Cancers Unique After Treatment?
 

SpitFire, having had a HER2+++ cancer doesn't predispose you to additional cancers or disease, any more than anyone else. Having had a HER2+++ cancer makes it more likely that your cancer has already spread, before you take your first treatment, and those cancer stem cells lie dormant in your distant body, setting you up for metastatic disease if those cells every mature and become active. That's why it matters, in the long run, and why we take Herceptin for a year after chemotherapy.

Re: What Makes HER2 Positive Cancers Unique After Treatment?
 

Yes, Hormone Negative, HER2 positive cancers are more likely to come back and I thought the risk for that greatly decreased after 4 years past diagnosis, but could still come back, though rare, up to 7 years out from diagnosis. After 7 years, I thought the cancer could not come back except if it was a hormone positive cancer, then it can up to 25 years.

For how long out from diagnosis can a HER2 Positive breast cancer still recur despite the hormone status?

Do patients with different subtypes of breast cancer need more surveillance long term or even for the rest of their lives than other less aggressive types?

When I read that some cancers are aggressive, I think aggressive means fast and soon. I thought the Hormone Positive breast cancers were the ones that were dormant for years.

Can a HER2 Positive breast cancer go dormant?

Re: What Makes HER2 Positive Cancers Unique After Treatment?
 

I just want to add a small correction. Your "body" doesn't overexpress HER-2, your cancer does. Every human body has HER-2.

I don't think there's a hard and fast rule about a time after which a HER-2 positive cancer that's been treated can be considered "cured." (Actually, I've heard there isn't one for any cancer.) That being said, I do think it's the case that the HR+ cancers are more likely to recur or metastasize many years out than the other types.

Until the US changes the way it tracks cancer cases, we won't have reliable statistics. One's stage is recorded at initial diagnosis, and it is never changed. That makes it impossible to know who has a local recurrence or metastasis of the same cancer.

Amy

Re: What Makes HER2 Positive Cancers Unique After Treatment?
 

I would think that if you've had any cancer but particularly HER2+ cancer, you will and should be monitored for life and hopefully carefully. I've read that HER2 often comes back well after the 5 year period although mine was within that framework.
Why not be safe?
Enjoy life and don't dwell on cancer but be vigilant.
health and happiness
sarah

Re: What Makes HER2 Positive Cancers Unique After Treatment?
 

I don't consider my cancer ever being "cured". That's why the term "no evidence of disease" (aka NED) is more appropriate.

While my oncologist considers my 2nd breast cancer a new primary (because it was in the other breast), it did have the exact same pathology as the first cancer. So I tend to think of it as a recurrence. It was 12 years after my first cancer and I did 10 years of anti-estrogen treatment. But I did not have chemo or herceptin for the first one.

I saw my oncologist every 6 months until the recurrence and it's been every 4 months for the past 3 years. We are now moving back to every 6 months, with an MRI once a year. I am on an AI (again!!!!) for an indefinite period of time.

Conversely, I had a good friend who was diagnosed as Stage 2b, ER+, PR-, Her2-. The "good" breast cancer, right? Wrong - she recurred a year after chemo, surgery, radiation, AI as Stage 4 and was dead in 8 months. She told me I was lucky to be Her2+ because there are so many tools to fight it these days.

Bottom line (as others have said) - be vigilant but live your life. Don't let this stinking disease control you

Best
Janis

Re: What Makes HER2 Positive Cancers Unique After Treatment?
 

Last I heard, no studies showed any survival advantage for early detection of metastasis. So they don't recommend follow-up screening for that.

Any treatment that will clear up a little metastasis will clear up a lot. It's actually safe (and psychologically advisable) to just go on with your life unless and until there are symptoms. In fact, a friend of mine has been NED in the body for a number of years, and she doesn't get that scanned. She had brain mets, so she gets periodic brain MRIs, but that's it. She'll wait for symptoms of liver recurrence to get that looked at.

I kind of follow that philosophy now. I resist getting scanned over-much, because I hate the scanxiety. We do need to peek in there once in awhile, but to my way of thinking more is not better.

At the same time, having had cancer, even early stage, can be an impetus to rethink one's goals and philosophy of life. Anne Lamott makes that point in Bird by Bird, which is mostly about writing. Every so often, stop and think, "If I were dying tomorrow, would I be doing this right now?" Or, "If I were dying tomorrow, would this seem so important/infuriating/overwhelming?" Or, "What, right now, would be most life-giving for me?" It's a good way to calibrate our self-talk and our decisions about how to live our lives.

Re: What Makes HER2 Positive Cancers Unique After Treatment?
 

Good advice, Amy.

Re: What Makes HER2 Positive Cancers Unique After Treatment?
 

When I was first diagnosed with HER II positive breast cancer, my doctor told me that if my cancer hadn’t spread or recurred after five years from ending treatment, than my chances of getting cancer again was the same as the average person. Because my cancer has both spread and recurred, I will never be considered “cured”. The best I can hope for is stable or NED.


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12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments.
10/16 – Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour was located. Scared it’s a cancer recurrence.