HER2+ - What's that even mean?

Herky

Hi all! I'm 37 and I've just been recently diagnosed with DCIS via a biopsy on my left breast. The mass is about 9cm, and I'm ER-/PR- and HER2+. The tumor has comedo type cells. I'm having a double mastectomy in a couple of weeks and I'm just trying to understand what it all means. I'm hoping that the final pathology still shows as just DCIS and there's not an invasive component, but I just don't know right now. Can anyone tell me what the significance is of being ER-/PR- and HER2+ when it comes to prognosis and recurrence? Does it mean I'll automatically need chemo and radiation even if it's non-invasive? I know there's a clinical trial for Stage 0 cases to use Herceptin - what are the side effects and how much benefit does it provide in preventing recurrence? Would those of you that have taken it recommend doing the clinical trial? Sorry for all the questions, but you all know SO much more about this than I do!

skmarm

Herky, I am so sorry that you have had to join us, but please know that you are among friends.  There is a lot to learn when you are first diagnosed and it is overwhelming.  Trust me when I say that you will feel much better when you have had your surgery, receive your pathology report and know what it is that you are dealing with.  Then you can move forward with a plan.

Of course, as with anything, you need to consult with your oncologist to make your decisions.  That having been said, perhaps the ladies here can provide some information.

There is no way to know for sure if your cancer is in situ (contained in the ducts) or invasive (moved outside of the ducts) until the pathology is done on your breast tissue; however, a mass of 9 cm is very large for a cancer to be in situ.  Though the biopsy may not have revealed invasive cancer, you are right to be prepared for that possibility.

Comedo formation of cells is a more serious formation.  It is generally accompanied by cell necrosis, which means that some of the cancer cells are dead.  It would seem that dead cancer cells are a good thing, but in this case, it means that the cancer is growing so rapidly that the blood supply cannot keep up with nourishing them and so they die.  Rapidly growing cancer is a hallmark of Her2+ cancer.

The good news is that rapidly growing cancer cells respond very well to chemotherapy.  Chemotherapy is targeted to kill rapidly growing cells (which unfortunately, also includes, hair cells, mucous membrane cells, etc.), and cancer cells fall within this group.  Generally speaking, the faster growing your cancer is, the better your response to chemotherapy.

In the past, Her 2 positive cancer that was less than 1 cm, in situ, or otherwise considered less threatening was not treated with chemo or Herceptin.  What research has found is that even these small cancers, because they are Her2 positive, have a higher probably of recurrence and therefore can benefit significantly from chemotherapy and Herceptin.  If your cancer is in situ, then it is going to be a bit more difficult to decide whether or not to take chemotherapy and Herceptin (as opposed to have IDC, in which case, it is a no-brainer), but there are a lot of oncologists and Her2 positive ladies who would jump at the chance to take chemo and Herceptin, even with in situ cancer.  The reason is because even if your chance of recurrence is low, the chemo and Herceptin can lower it even further by over 50% (together).  That is truly significant.

Personally, I was more afraid of chemo than I was of cancer or dying.  I didn't have a choice about chemo, and in a way, I'm glad there was no choice to make, because I am such a scaredy cat, I probably would have chosen not to have chemo and then wondered the rest of my life if I had made the right choice.  If given the choice, do what you think is best and find a doctor that you can trust to help you make the right decision.

With regard to the prognostic significance of Er-/Her2+, be careful about the survival statistics that you read on the internet.  Yes, prior to Herceptin, the outlook for Her2+ ladies (ER positive or negative) was less positive, because of the agressive nature of Her2+ cancer.  You will see that all over the medical literature "prognosis is grim"...That precedes Herceptin.  With Herceptin, the playing field is much more even and the prognosis is not nearly as grim.  

ER/PR + cancer is slower growing, has anti-hormonal options (like Tamoxifen) and has less chance of recurrence from the beginning than Her2+ cancer.  Her2+ cancer is faster growing, has a greater chance of recurrence in the first 3 years; however, the risk of ER+ cancer recurring remains about the same throughout a patient's life and the risk of ER-/Her2+ cancer recurring after about 3 years drops significantly AND stays lower throughout a patient's life.  So you trade having a higher recurrence rate in the first three years for perhaps a little more peace of mind later in life.

Also, and this is a big plus, there is a LOT of research taking place with Her2+ cancer - vaccine trials, Lapatnib, Neraptinib - all kinds of things.  When I asked my oncologist why there was so much going on for Her 2+ cancer when this type of cancer represents only about 20% of cancer patients, he responded that it is because scientists know more about Her2 and the research is more focused because of the discovery of how the Her2 gene operates.  In this way, we Her2+ gals are very fortunate.

I know that you will not want chemotherapy and I don't blame you - I sure didn't want it either.  But if it is indicated, bear in mind that research shows that Herceptin is more effective is administered with chemotherapy.  In many women who receive chemo and Herceptin prior to surgery, the tumor is completely gone by the time the surgery rolls around!  If your cancer has established any blood or lymph supply, then there is the possibility that cancer cells have escaped into your circulatory system and the chemo/Herceptin can be very effective in killing them and keeping your cancer from spreading.  Chemo is no fun, but doable.  Herceptin may have mild side effects, but is a walk in the park.  I am almost finished with a year of Herceptin and I am only now feeling a little achy in the joints, some dry cuticles now and then - nothing major at all.  And for this, I get a 50% reduction in the possibility of my cancer returning.

I hope that this helps you.  If you get a chance to take Herceptin through a clinical trial - DO IT.  If you don't get a chance to take it through the clinical trial - DEMAND IT.  It is easily taken and the peace of mind alone will be worth any inconvenience of going in for the infusions.

Take special care, dear.

Kelly 

skmarm

Herky, I am so sorry that you have had to join us, but please know that you are among friends.  There is a lot to learn when you are first diagnosed and it is overwhelming.  Trust me when I say that you will feel much better when you have had your surgery, receive your pathology report and know what it is that you are dealing with.  Then you can move forward with a plan.

Of course, as with anything, you need to consult with your oncologist to make your decisions.  That having been said, perhaps the ladies here can provide some information.

There is no way to know for sure if your cancer is in situ (contained in the ducts) or invasive (moved outside of the ducts) until the pathology is done on your breast tissue; however, a mass of 9 cm is very large for a cancer to be in situ.  Though the biopsy may not have revealed invasive cancer, you are right to be prepared for that possibility.

Comedo formation of cells is a more serious formation.  It is generally accompanied by cell necrosis, which means that some of the cancer cells are dead.  It would seem that dead cancer cells are a good thing, but in this case, it means that the cancer is growing so rapidly that the blood supply cannot keep up with nourishing them and so they die.  Rapidly growing cancer is a hallmark of Her2+ cancer.

The good news is that rapidly growing cancer cells respond very well to chemotherapy.  Chemotherapy is targeted to kill rapidly growing cells (which unfortunately, also includes, hair cells, mucous membrane cells, etc.), and cancer cells fall within this group.  Generally speaking, the faster growing your cancer is, the better your response to chemotherapy.

In the past, Her 2 positive cancer that was less than 1 cm, in situ, or otherwise considered less threatening was not treated with chemo or Herceptin.  What research has found is that even these small cancers, because they are Her2 positive, have a higher probably of recurrence and therefore can benefit significantly from chemotherapy and Herceptin.  If your cancer is in situ, then it is going to be a bit more difficult to decide whether or not to take chemotherapy and Herceptin (as opposed to have IDC, in which case, it is a no-brainer), but there are a lot of oncologists and Her2 positive ladies who would jump at the chance to take chemo and Herceptin, even with in situ cancer.  The reason is because even if your chance of recurrence is low, the chemo and Herceptin can lower it even further by over 50% (together).  That is truly significant.

Personally, I was more afraid of chemo than I was of cancer or dying.  I didn't have a choice about chemo, and in a way, I'm glad there was no choice to make, because I am such a scaredy cat, I probably would have chosen not to have chemo and then wondered the rest of my life if I had made the right choice.  If given the choice, do what you think is best and find a doctor that you can trust to help you make the right decision.

With regard to the prognostic significance of Er-/Her2+, be careful about the survival statistics that you read on the internet.  Yes, prior to Herceptin, the outlook for Her2+ ladies (ER positive or negative) was less positive, because of the agressive nature of Her2+ cancer.  You will see that all over the medical literature "prognosis is grim"...That precedes Herceptin.  With Herceptin, the playing field is much more even and the prognosis is not nearly as grim.  

ER/PR + cancer is slower growing, has anti-hormonal options (like Tamoxifen) and has less chance of recurrence from the beginning than Her2+ cancer.  Her2+ cancer is faster growing, has a greater chance of recurrence in the first 3 years; however, the risk of ER+ cancer recurring remains about the same throughout a patient's life and the risk of ER-/Her2+ cancer recurring after about 3 years drops significantly AND stays lower throughout a patient's life.  So you trade having a higher recurrence rate in the first three years for perhaps a little more peace of mind later in life.

Also, and this is a big plus, there is a LOT of research taking place with Her2+ cancer - vaccine trials, Lapatnib, Neraptinib - all kinds of things.  When I asked my oncologist why there was so much going on for Her 2+ cancer when this type of cancer represents only about 20% of cancer patients, he responded that it is because scientists know more about Her2 and the research is more focused because of the discovery of how the Her2 gene operates.  In this way, we Her2+ gals are very fortunate.

I know that you will not want chemotherapy and I don't blame you - I sure didn't want it either.  But if it is indicated, bear in mind that research shows that Herceptin is more effective is administered with chemotherapy.  In many women who receive chemo and Herceptin prior to surgery, the tumor is completely gone by the time the surgery rolls around!  If your cancer has established any blood or lymph supply, then there is the possibility that cancer cells have escaped into your circulatory system and the chemo/Herceptin can be very effective in killing them and keeping your cancer from spreading.  Chemo is no fun, but doable.  Herceptin may have mild side effects, but is a walk in the park.  I am almost finished with a year of Herceptin and I am only now feeling a little achy in the joints, some dry cuticles now and then - nothing major at all.  And for this, I get a 50% reduction in the possibility of my cancer returning.

I hope that this helps you.  If you get a chance to take Herceptin through a clinical trial - DO IT.  If you don't get a chance to take it through the clinical trial - DEMAND IT.  It is easily taken and the peace of mind alone will be worth any inconvenience of going in for the infusions.

Take special care, dear.

Kelly 

skmarm

Just another note about the stats that you see on the internet with regard to Her 2+ survival, particularly for lower risk Her 2+ ladies.  Remember, that Herceptin was originally used for metastatic patients.  It has only been used for adjuvant therapy (regularly) for about 4 to 6 years, so whatever stats you see, check to see if they include or are limited to the period 2005 to current.  If they include prior years, then they are not likely to include the use of Herceptin and the survival rates or DFS rates are going to be a bit lower than they would be today.  

The same is true for ladies who had tumors smaller than 1 cm but Her 2+ - they have not traditionally been prescribed Herceptin and while their risk of recurrence is lower from the beginning, it can be EVEN lower with Herceptin - that may not be reflected in the stats you read.

I just don't want you discouraged by reading old information. 

sylwiamolik

Hello

There's no chance it will recurr as an invasive cancer in a distant organ (unless they will find an IDC component after surgery). Only possible threat is local recurrence of a cancer. But You shouldn't worry about that because studies have shown that lumpectomy or mastectomy followed by radiation (even w/o chemotherapy or herceptin) kills the bug once and for all

 By the way, look at this

http://www.medscape.com/viewarticle/734028

Greets from the other side of the globe

PSK07

If what you have is pure DCIS you will not have chemo. DCIS is, by definition, non-invasive and Chemo is indicated only for invasive cancers.  If, after your mastectomy, the pathology shows a micro-invasion (you'd then move to Stage 1 from Stage 0), you are still unlikely to have chemo.

As to HER2 status - with DCIS it doesn't really matter. As you note, there are on-going studies looking at whether the status is meaningful, but for now, while interesting, it doesn't mean anything treatment-wise unless you are in a study. Again, if you end up with IDC or a micro-invasion, the status will make a difference. Having a mastectomy may affect whether or not you would even benefit from taking Tamoxifen or another drug.   

Go and peruse the DCIS forum for more info. 

Good luck with everything and take care.

Herky

Thanks ladies, for you insight and sharing your wealth of information! Skmarm, your post was really informative. I feel like there are so many negative traits to my cancer (comedo, ER-/PR-, Her2+, tumor size, etc.) that it would be really surprising to me if there wasn't an invasive component. What stinks is that because the biopsies came back as DCIS they won't give me chemo and Herceptin before surgery, which from what I've seen has better results than having chemo and Herceptin after surgery. Or is that not true? I'm glad to hear that you didn't have very many side effects from the Herceptin. Thanks again for all of the resonses - the more I learn the better prepared I feel and it makes it all just a little less scary.

allisontom911

Herky - I was 37 when diagnosed in December 2009. I am surprised by the size of the DCIS also. I will say a prayer for you that is is not IDC.

As far as having chemo first, really the only "benefit" I am aware of is the docs can see how you respond to chemo. My breast tumor was 4.8cm and my lymph node was 6cm. After my first chemo you could feel a huge decrease in size in my breast and underarm. After that they didnt change much but in the end, my breast tumor was 2.8 and they didnt measure the underarm one for whatever reason.

Please keep us posted on the outcome. You can reply to this thread or start a new one. If you have any questions you can send me a private message too.

When is the surgery date?

shelleydodt

Hi Herky, I had the same diagnosis, Stage 0, ER and Progesterone negative but Her2/neu positive. I got a VACCINE in a clinical trial in Pennsylvania. I thought about getting a mastectomy too but decided I would feel safer with a vaccine and lumpectomy. The vaccine trained my own cells to search my body for any other cells like this and eat them . They made it out of my own dendritic cells and I got six shots over six weeks and when they did my surgery, no cancer cells found.They measure my level of immunity to DCIS/Her2/neu every six months and my levels have been increasing.  You should look at my website www.shelleydodt.com and see if you would be interested. This vaccine is in addition to any other treatment and you still could get your mastectomy after the vaccine if your doctor thinks you need it. My doctors name is Dr. Brian Czerniecki.Feel free to contact me if I can help you with further information. Shelley

Survivorwoman

Hi Herky,

I am also very sorry you had to join us. I am sure you are still in shock. I still am about my breast cancer and I am six month after surgery. As Kelly mentioned it in her post women with the HER2+ protein, now thankfully, have different drugs to treat it. OK, so we can't take Tamoxifen, or other drugs that work for women with ER+/PR+ breast cancers, but at least there other ways for us  to fight it. I am in a clinical trial for Lapatinib (Tykerb- another name) alone instead of doing Herceptin and I am also in the midst of doing chemo.  Anyway, as Kelly mentioned it before, but I think I should too, please carefully consider what you read on the Internet b/c some of the statistics are very out of date, therefore, very misleading and to say the least, very frightening. Plus, always keep in mind that we are all very different molecularly, so, try not to compare yourself to others too much. If you do, as I did, (HUGE MISTAKE) at the beginning of my diagnosis then you will drive yourself crazy with it.  

I hope your surgery and recovery will be easy and you will come back and tell us about how you are doing. Best wishes to you.

Katia

PSK07

Herky, since you have been diagnosed with DCIS only, you cannot have chemo, pre or post. Chemo is used only for invasive cancers. They will not do chemo on the slight off-chance you have IDC. And remember, right now, HER2 status with pure DCIS is not an issue and wouldn't affect treatments offered unless you go into a trial. Three years ago they didn't even test (or if they did, they didn't let me know) for HER2.

If, after your surgery, an invasive component is found, treatment options may change. 

I am hoping and praying that you have nothing more than DCIS. Take care.

Herky

Thanks everyone. My surgery date is the 9th and I honestly can't wait. I know that may sound weird, but I just want it out and to have the final pathology back. I had a chest CT on Friday because the MRI I had showed a 9mm mass in my anterior mediastinum. The CT results came back today and they said it was just a lymph node, but the CT showed some spots on my liver and reccommended an MRI. It's like I'm running in circles. My doctor and I agreed to just wait for the surgery and get the final pathology before deciding what to do about the spots on the liver. There's a lot of things it could be and it just seems silly to keep running all of these tests when we don't even know if I have an invasive cancer or not. I don't know. Is this really happening? Do I really have to worry about it having spread to my liver already?

lago

Herky I was the same way about surgery. I hated to do all these test that put off surgery. I felt so relieved after surgery.

I to had a spot on my liver. They think it's a cyst or something I had since birth. They wanted to wait till chemo was done to scan again. I'll be having that liver CT next Tuesday the day before your surgery. I'm not too worried.

Good luck with your surgery.  I hope everything stays DCIS and not IDC!

skmarm

Dear Herky,

Can I ask you something?  In your original post, you said that your tumor was a 9cm mass, but in the most recent post, you said that it was a 9mm mass that turned out to be a lymph node.  Were you mistaken in the first post?  Because there is a big difference between 9cm and 9mm - if the mass you were referring to in your first post is actually the 9mm mass (that is a benign lymph node), then it looks more and more like DCIS and that is a very good thing indeed!  

You can have DCIS that is extensive - and maybe shows up on a mammo in an area of 9 cm - but it doesn't matter how big it is if it is in situ - or contained within the duct.  Because "contained is contained" and you really don't have to worry further.  So its a pretty sigificant distinction.

If it is determined to be DCIS - truly in situ - then you are not looking at chemo and your liver issues are something else (I have a friend who has all kinds of benign liver tumors on her liver, she has had them for years with no symptoms, and she is healthy as a horse!).  So don't assume that your cancer has spread to the liver because it probably has not.  It would be somewhat odd (though not impossible) for it to spread to the liver without stopping and hanging out a little while in your lymph nodes - and since your CT did not show any of that, I don't think you have anything to worry about there.

As I said before, dear, you are in the absolute darkest place, right here this very minute.  Once you have your surgery, you will know what and if you have a battle and then you can plan your attack.  

One of the things that I found very curious about the "cancer world" is that when you don't have cancer, all you ever hear about is "early detection, early detection, get your mammogram".  So you think that tests and identifying cancer and knowing what you are dealing with is the "name of the game" with cancer.

But then, once you are diagnosed with cancer, you find out that in general, oncologists don't do a lot of testing unless there is a definitive reason to do so, such as pain or trouble breathing or something that you can put your finger on.  All this time you are thinking that finding any malignancy is the key to dealing with it successfully (and that is true when dealing with a first diagosis) only to find out that after the first diagnosis, gathering a lot of information about any further malignancy is not very high up on the oncologists' agendas.

This took a lot of getting accustomed to for me, as I always think that "the devil you know is better than the devil you don't know".  But I understand more now that finding things out early doesn't much change how you deal with things.  In truth, even if you were to find out today that the spots on your liver were cancer, you would still go through with your surgery and you would still be facing the possibility of chemo, and you would still need to wait for your pathology report to know how to move forward.  

This may sound kind of harsh and I don't mean for it to.  When my oncologist had this talk with me, I thought he was being a bit heartless, but then he went on to tell me that he knew how I felt, because he had been diagnosed with kidney cancer three years ago.  He has walked the walk and so he can look me in the eye and give me advice better than any other doctor I've had.  It is difficult to do, but he advised me to try not to "borrow trouble" - try not to worry about the unproven.  He said that worrying about things that have not yet happened or not yet been verified gives the cancer power over your life.  Cancer has enough power - don't give it any more.

Again, I know this is much easier said, than done, truly it is.  But you are doing everything you possibly can do right now to get good information, make well thought out decisions, using restraint and following the advice of your oncologist.  I, for one, really admire how you are handling this and I think you have put yourself in the best position possible to move forward with any possible treatment after the surgery.  I think you are doing a great job.

Try to use this time before the surgery to clean up your house, wash the sheets, eat some good meals and get some rest.  I am not a medication taker myself, so I had a lot of trouble admitting that I was too worried to sleep and had a lot of sleepless nights.  When I finally said something, they were able to give me some medication for sleeping and for coming down off my anxiety level when things just got a bit much for me.  I was so worried about becoming dependent on these things, but of course, I didn't.  When I look back, I wonder why I suffered needlessly, so if you need some assistance from your onc, don't hesitate to ask for it.

The ladies on this board are great.  I didn't reach out to them for a long time after my diagnosis and that is something I would have changed also.  Again, I admire you for reaching out, getting answers, making cautious but deliberate decisions.  You are doing great, Herky.  None of here blames you for being anxious or scared - but you are making good decisions in spite of your fear and that is all anyone can hope for.

Take special care.  Kelly

Herky

Kelly - I have both a 9cm mass that's DCIS and the MRI showed an additional 9mm mass in my anterior mediastinum.  It was the 9mm mass that I had the CT scan of and it showed that it was a lymph node, so that was good, but I still have a large area of DCIS and now these new spots on my liver that showed up on the chest CT. You're so dead on about the liver spots not mattering in terms of my next treatment steps, which is why I'm not bothering with the MRI. I'm just going to wait for the pathology from the BMX and that will determine any further testing on my liver. It's jsut scary - my pathology can be anywhere from just DCIS to an invasive cancer that has already started to spread to my liver and who knows where else. It is hard to get used to though, you would think you'd want to just know every place where the cancer is (or isn't) before proceeding, but it just doesn't work that way. And I know I shouldn't worry about the unknown or unproven, but there's a part of me that thinks that if I worry about it then I can prepare myself for whatever happens next. I don't want to be caught off guard. I'm ok with having the BMX, and I'm coming to terms with maybe having to have chemo even though I don't know yet if I'll need it. I really appreciate your words of encouragement - it means alot. Your advice about anti-anxiety meds is well taken - I will ask about that when I see the oncologist because I think it would help, although I'm really not having any trouble sleeping because I have two little ones that wear me out! Thanks again! Kristine

Louisa2

Hello.  You all seem to know a lot about HER2 and Herceptin.  I had a lumpectomy for DCIS that showed ER+ and PR+, but they did not test for HER2.  Affected area of 3.5 cm, plus small margins--and small breasts!--have led me to schedule a unilateral mastectomy for May 2.  I distinctly recall asking the surgeon about HER2, but I think she said that they don't usually test for that if it's DCIS.  I could be remembering that incorrectly, as I was still trying to absorb the mastectomy idea.  Should I insist on being tested for HER2?  Shouldn't they be able to do that from the existing pathology slides, or would they have to do it from fresh tissue?  I have not yet seen an oncologist, and they told me I wouldn't until after my surgery.  Does anyone want to weigh in on my situation?  Thanks so much.

lago

I would talk to your doctors about that but I think the information is correct that they don't test for HER2+ if your in sito. I did read this on Dr. Susan Love's site:

"First, HER2 is still an enigma. It is present in most ductal carcinoma in situ (DCIS), a precancerous breast disease, but is present in only about 25 percent of all invasive breast cancers. Since DCIS usually doesn't progress to invasive cancer, HER2 may be telling the cells to grow, but not necessarily to invade other tissues-a condition for malignancy. This may mean that HER2 needs other factors to become malignant." source 

Granted as we know there are cases that DCIS does become invasive but if Dr. Love's statment is correct not all DCIS that is HER2+ will develop into IDC that is HER2+. Taking Herceptin only workse on HER2+ cancers.

So again I say discuss this with your doctor. (I have no idea when Susan Love post that information so I don't know if it's dated).

-----------------------------------------------------

Also check out standard care at NCI (breast cancer pdf on page): 
http://nccn.com/patient-guidelines.html
or
http://www.nccn.org/professionals/physician_gls/f_guidelines.asp