Her2

sunnyskye

Hi. I've been reading about Her2, etc. etc. and thought I'd ask what it all means. My cancer was invasive ductal carcinoma, very small 9mm, with DCIS. I had a lumpectomy and a resection for cleaner margins with 6 weeks of radiation, no node involvement. Pathology was Grade III, ER+, HER2neu negative with chemocronidosis (not sure of the spelling). The chemo oncologist said he was not recommending chemo because it would make only a 1% difference. I was told I was not a candidate for Tamoxifen because of the Her2neu. It's been 1-3/4 years since surgery. I've never had any x-rays or other tests and have not had blood work done since the day of surgery. Is that standard procedure? I'd also like to know what the meaning of the Her2neu negative and ER positive is? Thanks.

SusanAnne

Hi sunnyskye,

I'm not an expert but I'll try to answer some of your questions. Sounds like they caught your cancer early, so that's a good thing. As far as I know, Tamoxifen has nothing to do with the HER2 status, only the ER/PR status. It's my understanding that anyone who is ER+ could be a candidate. I'm ER- but PR+ and still take it.

Regarding the annual testing, I'm just comming up on a year from dx so I wouldn't know yet but at the least I think you should be having blood tests for tumor markers (CA 27-29). If that number begins to rise, then further testing is indicated. I also hope you are going for mammograms.

The pathology of your tumor of course tells you what kind of cancer it is and what helped to fuel it to grow. In your case it looks like estrogen. Do you know which test they used to check the HER2 status? They first used the IHC (immunohistochemical) test for me and it came out negative (1+). I then had them use a newer test called FISH which came out positive 2.8. That means that in my tumor I had too many HER2 proteins on my cells which allowed my cancer to grow at a much faster rate. If they didn't use the FISH test for you, perhaps you can still ask it to be done.

Is anyone else out there who can add or explain things differently or perhaps correct me if I'm wrong? Hope this helps.

Susan

sunnyskye

SusanAnne said:

Hi sunnyskye,

I'm not an expert but I'll try to answer some of your questions. Sounds like they caught your cancer early, so that's a good thing. As far as I know, Tamoxifen has nothing to do with the HER2 status, only the ER/PR status. It's my understanding that anyone who is ER+ could be a candidate. I'm ER- but PR+ and still take it.

Regarding the annual testing, I'm just comming up on a year from dx so I wouldn't know yet but at the least I think you should be having blood tests for tumor markers (CA 27-29). If that number begins to rise, then further testing is indicated. I also hope you are going for mammograms.

The pathology of your tumor of course tells you what kind of cancer it is and what helped to fuel it to grow. In your case it looks like estrogen. Do you know which test they used to check the HER2 status? They first used the IHC (immunohistochemical) test for me and it came out negative (1+). I then had them use a newer test called FISH which came out positive 2.8. That means that in my tumor I had too many HER2 proteins on my cells which allowed my cancer to grow at a much faster rate. If they didn't use the FISH test for you, perhaps you can still ask it to be done.

Is anyone else out there who can add or explain things differently or perhaps correct me if I'm wrong? Hope this helps.

Susan

Thank you for the info. Yes, I go every 3 months to the doc and every 6 for the mammo. I just had it last week. Two times ago I had to have another biopsy. I have a lump under the scar which they think is fat necrosis. I don't like having it in there : ) it makes me worry. However, they are watching it. My cancer was caught early only due to my own proactive nature. I went for a routine mammo on 7/25/02 and calcifications showed up. I was told by the radiologist at that office they were and looked benign to come back in 6 months. But, I went online as I didn't have a clue what they were and what I read scared me into going to Hopkins for a second opinion. I had a biopsy on 8/6 and on 8/8/02 was told the news. So, I figure if God was ready for this girl, he would not have led me to the second opinion. Because of that I try to not worry as much but have recently been having other aches and pains elsewhere. It is very sad that once you've been dx with cancer, every ache and pain that lingers for a while makes you wonder and scared. The results of some testing show a bunch of things but the most troubling to me is a 2.5 x 2.9 ovarian cyst. I'm 47 and have not had a period in 12 years due to a partial hysterectomy. They are now watchin the cyst also but I'd prefer to get it all removed. I figure I'm going thru pre-menopause anyhow so why not but they don't see it that way. I am not a candidate for any hormones....i was told my cancer grew because of hormones. I never really bounced back from the rad treatments I get very very tired somedays depending on what kind of day it was. I exercise regularly, walk alot and try to eat right. So I'm doing what I can I just wish I could get the worry out of my mind. I think that it is because they do not testing. The tests I recently had was done by my GP, not my cancer doc. I've not had a blood test done or any other test by my surgeon or oncologist since 8/02 before the lumpectomy. I hear so many women talk about their routine blood work and the results and I've not had one of those in nearly two years and it makes me wonder why not. Thanks so much for the response...you sound much more knowledgeable than I am! : )

jeancmici

sunnyskye said:

Thank you for the info. Yes, I go every 3 months to the doc and every 6 for the mammo. I just had it last week. Two times ago I had to have another biopsy. I have a lump under the scar which they think is fat necrosis. I don't like having it in there : ) it makes me worry. However, they are watching it. My cancer was caught early only due to my own proactive nature. I went for a routine mammo on 7/25/02 and calcifications showed up. I was told by the radiologist at that office they were and looked benign to come back in 6 months. But, I went online as I didn't have a clue what they were and what I read scared me into going to Hopkins for a second opinion. I had a biopsy on 8/6 and on 8/8/02 was told the news. So, I figure if God was ready for this girl, he would not have led me to the second opinion. Because of that I try to not worry as much but have recently been having other aches and pains elsewhere. It is very sad that once you've been dx with cancer, every ache and pain that lingers for a while makes you wonder and scared. The results of some testing show a bunch of things but the most troubling to me is a 2.5 x 2.9 ovarian cyst. I'm 47 and have not had a period in 12 years due to a partial hysterectomy. They are now watchin the cyst also but I'd prefer to get it all removed. I figure I'm going thru pre-menopause anyhow so why not but they don't see it that way. I am not a candidate for any hormones....i was told my cancer grew because of hormones. I never really bounced back from the rad treatments I get very very tired somedays depending on what kind of day it was. I exercise regularly, walk alot and try to eat right. So I'm doing what I can I just wish I could get the worry out of my mind. I think that it is because they do not testing. The tests I recently had was done by my GP, not my cancer doc. I've not had a blood test done or any other test by my surgeon or oncologist since 8/02 before the lumpectomy. I hear so many women talk about their routine blood work and the results and I've not had one of those in nearly two years and it makes me wonder why not. Thanks so much for the response...you sound much more knowledgeable than I am! : )

With your last more detailed message, I need to add to SusanAnne's very good advice to you. I cannot understand why you are not being followed routinely by your oncologist. I think you should ask him/her and see what the answer is. If the opinion is no need for an oncologist's follow-up then I would look for another oncologist- do some homework on good docs and take your business elsewhere.

I too think watching a cyst when you've already had a partial hysterectomy is nutty. Also unusual what you were told about tamoxifen.

You went to John Hopkins and this is the followup you got from them???? Really, your situation sounds so atypical that I did not write earlier because I did not know what to say. But you were originally proactive - start your research again and become proactive again even if now you are tired which I can understand. Some of your tiredness I'll bet is this underlying worry that all is not being done as it should be.

Good Luck and please keep in touch with us in the forum.
Jean

inkblot

sunnyskye said:

Thank you for the info. Yes, I go every 3 months to the doc and every 6 for the mammo. I just had it last week. Two times ago I had to have another biopsy. I have a lump under the scar which they think is fat necrosis. I don't like having it in there : ) it makes me worry. However, they are watching it. My cancer was caught early only due to my own proactive nature. I went for a routine mammo on 7/25/02 and calcifications showed up. I was told by the radiologist at that office they were and looked benign to come back in 6 months. But, I went online as I didn't have a clue what they were and what I read scared me into going to Hopkins for a second opinion. I had a biopsy on 8/6 and on 8/8/02 was told the news. So, I figure if God was ready for this girl, he would not have led me to the second opinion. Because of that I try to not worry as much but have recently been having other aches and pains elsewhere. It is very sad that once you've been dx with cancer, every ache and pain that lingers for a while makes you wonder and scared. The results of some testing show a bunch of things but the most troubling to me is a 2.5 x 2.9 ovarian cyst. I'm 47 and have not had a period in 12 years due to a partial hysterectomy. They are now watchin the cyst also but I'd prefer to get it all removed. I figure I'm going thru pre-menopause anyhow so why not but they don't see it that way. I am not a candidate for any hormones....i was told my cancer grew because of hormones. I never really bounced back from the rad treatments I get very very tired somedays depending on what kind of day it was. I exercise regularly, walk alot and try to eat right. So I'm doing what I can I just wish I could get the worry out of my mind. I think that it is because they do not testing. The tests I recently had was done by my GP, not my cancer doc. I've not had a blood test done or any other test by my surgeon or oncologist since 8/02 before the lumpectomy. I hear so many women talk about their routine blood work and the results and I've not had one of those in nearly two years and it makes me wonder why not. Thanks so much for the response...you sound much more knowledgeable than I am! : )

Hi sunny:

I'm curious as to what happens at your every-3-months doctor's visits? What kind of doctor do you see for "follow up"? Seems that at least a chemistry profile and CA 27-29 would be considered. Does the doc do a physical exam at that time as well? If nothing at all is done then these passive visits would seem to be a waste of time and monies. Follow up visits should be just that...a monitoring process. A proactive visit should include something other than "how are you". Some kind of tests where bio systems are checked via blood work and at least a minimal physical exam is done.

During these visits is also the time when you would voice any concerns, get answers to questions and/or get your docs opinion about anything else going on which is of concern to you.

Since you had rads, did your rad onc not suggest a regular follow up schedule? I'm almost 3 years out from surgery, chemo and rads and I initially saw all the docs on my team, every 3 months. I'm currently seeing them all on an every-6-month basis. I have blood work, including counts, chemistry profile and CA 27-29 with each oncologist visit. Each doc also does a physical exam at each visit. Each doc looks at my mammo films...not just the report. My surgeon absolutely scrutinizes the mammo films. I am currently on a once yearly mammo schedule, after two full years of every 6 month mammo's. (I had lumpectomy) I very much look forward to the time when I'll only see each doc once yearly!

You were fortunate in not having chemo but radiation can present some long term changes in addition to any short term effects and needs to be monitored for progress and proper healing (which can take several years to fully settle).

I believe that SusanAnne's info is correct and correlates with what I understand about Her2/neu. I also agree with Jean...Get another opinion and/or switch docs. You're paying for the services of a doctor who appears NOT to be delivering quality care. You deserve better.

Good luck and keep us posted.

Love, light and laughter,
Ink

SusanAnne

inkblot said:

Hi sunny:

I'm curious as to what happens at your every-3-months doctor's visits? What kind of doctor do you see for "follow up"? Seems that at least a chemistry profile and CA 27-29 would be considered. Does the doc do a physical exam at that time as well? If nothing at all is done then these passive visits would seem to be a waste of time and monies. Follow up visits should be just that...a monitoring process. A proactive visit should include something other than "how are you". Some kind of tests where bio systems are checked via blood work and at least a minimal physical exam is done.

During these visits is also the time when you would voice any concerns, get answers to questions and/or get your docs opinion about anything else going on which is of concern to you.

Since you had rads, did your rad onc not suggest a regular follow up schedule? I'm almost 3 years out from surgery, chemo and rads and I initially saw all the docs on my team, every 3 months. I'm currently seeing them all on an every-6-month basis. I have blood work, including counts, chemistry profile and CA 27-29 with each oncologist visit. Each doc also does a physical exam at each visit. Each doc looks at my mammo films...not just the report. My surgeon absolutely scrutinizes the mammo films. I am currently on a once yearly mammo schedule, after two full years of every 6 month mammo's. (I had lumpectomy) I very much look forward to the time when I'll only see each doc once yearly!

You were fortunate in not having chemo but radiation can present some long term changes in addition to any short term effects and needs to be monitored for progress and proper healing (which can take several years to fully settle).

I believe that SusanAnne's info is correct and correlates with what I understand about Her2/neu. I also agree with Jean...Get another opinion and/or switch docs. You're paying for the services of a doctor who appears NOT to be delivering quality care. You deserve better.

Good luck and keep us posted.

Love, light and laughter,
Ink

We just had a discussion at my breast cancer support group last week regarding doctors. Sunnyskye, if you do not feel comfortable in any way with your doctor, whether it be bringing up certain topics, not getting straight or understandable answers, or you not thinking they are doing a thorough enough job of tracking you, then maybe these doctors are not a good match for you. You are going to have a very long relationship with your doctor, it's worth finding one that suits you and makes you feel confident that you're on the right path. At the very least I'd go see one other oncologist just to get a second opinion. No offence to your GP, but I think this is a little out of the range of his expertise. Once you feel like you are in control of your situation once again, I'm sure you will begin to feel much better overall. You are your own best advocate.

Good luck to you.

Susan

sunnyskye

inkblot said:

Hi sunny:

I'm curious as to what happens at your every-3-months doctor's visits? What kind of doctor do you see for "follow up"? Seems that at least a chemistry profile and CA 27-29 would be considered. Does the doc do a physical exam at that time as well? If nothing at all is done then these passive visits would seem to be a waste of time and monies. Follow up visits should be just that...a monitoring process. A proactive visit should include something other than "how are you". Some kind of tests where bio systems are checked via blood work and at least a minimal physical exam is done.

During these visits is also the time when you would voice any concerns, get answers to questions and/or get your docs opinion about anything else going on which is of concern to you.

Since you had rads, did your rad onc not suggest a regular follow up schedule? I'm almost 3 years out from surgery, chemo and rads and I initially saw all the docs on my team, every 3 months. I'm currently seeing them all on an every-6-month basis. I have blood work, including counts, chemistry profile and CA 27-29 with each oncologist visit. Each doc also does a physical exam at each visit. Each doc looks at my mammo films...not just the report. My surgeon absolutely scrutinizes the mammo films. I am currently on a once yearly mammo schedule, after two full years of every 6 month mammo's. (I had lumpectomy) I very much look forward to the time when I'll only see each doc once yearly!

You were fortunate in not having chemo but radiation can present some long term changes in addition to any short term effects and needs to be monitored for progress and proper healing (which can take several years to fully settle).

I believe that SusanAnne's info is correct and correlates with what I understand about Her2/neu. I also agree with Jean...Get another opinion and/or switch docs. You're paying for the services of a doctor who appears NOT to be delivering quality care. You deserve better.

Good luck and keep us posted.

Love, light and laughter,
Ink

Hi. thanks for responding. i go to a doc every 3 months right now. one visit i see the surgeon and she does a breast exam and asks how i am feeling. 3 months later i see the oncologist who does a breast exam and asks how i'm feeling. every 6 months (on a surgeon visit) i have a mammo and she also reads the report for that. i don't beleive she actually reads the films. that is what my visits consist of and i thought they were the standard until i started reading this board. i had blood work done in august, 2000, the pre-surgical stuff, chest xray, etc. that is the last time either of my doctors ordered anything in regard to testing other than the mammo's every 6 months. it appears that that is not standard. do you think i ought to be asking for the blood work? i go back to the surgeon 4/2. i had the mammo done last week but the doc cancelled my appointment til april. thanks again, diana

sunnyskye

jeancmici said:

With your last more detailed message, I need to add to SusanAnne's very good advice to you. I cannot understand why you are not being followed routinely by your oncologist. I think you should ask him/her and see what the answer is. If the opinion is no need for an oncologist's follow-up then I would look for another oncologist- do some homework on good docs and take your business elsewhere.

I too think watching a cyst when you've already had a partial hysterectomy is nutty. Also unusual what you were told about tamoxifen.

You went to John Hopkins and this is the followup you got from them???? Really, your situation sounds so atypical that I did not write earlier because I did not know what to say. But you were originally proactive - start your research again and become proactive again even if now you are tired which I can understand. Some of your tiredness I'll bet is this underlying worry that all is not being done as it should be.

Good Luck and please keep in touch with us in the forum.
Jean

thanks for the response. i'm not wanting to watch the cyst. i think i'm going to get another opinion on that. with my history (as you are all probably aware) waiting and watching something is not easy!

SusanAnne

sunnyskye said:

Hi. thanks for responding. i go to a doc every 3 months right now. one visit i see the surgeon and she does a breast exam and asks how i am feeling. 3 months later i see the oncologist who does a breast exam and asks how i'm feeling. every 6 months (on a surgeon visit) i have a mammo and she also reads the report for that. i don't beleive she actually reads the films. that is what my visits consist of and i thought they were the standard until i started reading this board. i had blood work done in august, 2000, the pre-surgical stuff, chest xray, etc. that is the last time either of my doctors ordered anything in regard to testing other than the mammo's every 6 months. it appears that that is not standard. do you think i ought to be asking for the blood work? i go back to the surgeon 4/2. i had the mammo done last week but the doc cancelled my appointment til april. thanks again, diana

Yes, at the very least ask them to do a CA 27-29. Also ask if it was done prior to surgery and get those results to compare. Everyone is different but it should be under 38. You should ask for copies and track it yourself. If the number starts jumping up, insist on further tests. In the beginning I think the test is done every 3 months and, if stable, goes to every 6 months. Let me know what happens.

Susan

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