Found out too late?

[MAVIS]

I posted this on the wrong thread and will try here. I am new to the Her2 group --- and not sure I even belong.

I will try to be brief.

Dx. IDC in 04 - 63 yrs. old, lumpectomy with wide clear margins, no node involvement, ER+ PR + over 90%, tumor size 1.4 cm, stage 1, grade 3 - 36 rads w/ boosts, took Arimidex for 5 years.... many se's so decided to go off, since the dr. left it up to me.

I was reading about Her2 because of a friend and saw there were numbers..... saw that 2+ is considered border line positive and should be verified by a FISH test.

I didn't remember any numbers so dug out my path report and looked. It says : HER2 = 2+ (negative) and there was a notation at the bottom saying this was in consultation with another dr --- who verified, (but nothing about a FISH test being done)

I called the dr. office and was told that in 04 a score of 2+ was considered negative. They said they would try to find out more info and call me back. They did call back and said that I was just on the edge of the time that they started using the FISH test and I didn't have one. The Onc. they talked to said that being 5 and 1/2 years out I was doing well......

My surgeon specializes in breast surgery and all the female drs. and nurses at this breast center go to him. He did not think I needed chemo - so he manages the BC. I never saw a Med. Onc.

I have been seeing the Rad. Onc. since 04 because of not having a Med. Onc. I talked to her about the Her2 and she told me the exact same thing.

I have done a little reading and find that it is way too late now to do anything about it...... but here I am for 5 years thinking I am HER2 negative and I've been at least borderline!

I've even talked to some ladies that were dx at the same time (different hospital) and their path report just says negative - no numbers at all! I almost wish mine had had no numbers or that I wouldn't have looked....... This had upset me a lot.

I don't even know what I expect any of you to say --- just wondering if any one has any input at all.

So far I'm doing well, especially since I'm off the Arimidex, just some mild LE in the arm and breast.... and very serious joint problems they tell me will not get much better.

Any thoughts would be appreciated from any one.
Thanks,
Mavis

[Becky]

Dear Mavis

Being over 5 yrs out is wonderful. I just got to 5 yrs myself but I am highly Her2+, moderately ER+ but PR negative.

I know it is hard to not worry. All of us worry and most with no cause. It is too late for chemo or Herceptin but you are still in a great place. Her2 cancers tend to recur earlier (2-3 yrs out or so). And you have done well with nothing but surgery, rads and Arimidex! It is one thing I have always said on this board, not everyone needs everything thrown at them, the problem is that no doctor can tell yet who needs chemo, herceptin or other things so they tend to give it to everybody.

If your tumor block is still around, you might be able to get your doctor to send a piece of it off for a FISH test. Remember though, the results could be positive for Her2 and that won't give you much relieve but it very well might be negative too. Only you will know if this will give your mind any relief or if it will only make you worry even more.

Remember, you are doing FANTASTIC with great results from the treatment you have received.

Big hugs to you.

[MAVIS]

Thank you Becky for the reply.

I should tell you that one reason my dr. thought no chemo was because I am so super sensitive to almost all meds, everything from pain relievers to antibiotics that he said the chemo would do me more harm than good.

We are all amazed that I could do 5 years of Arimidex. It was really rough.

I will talk to my dr. at my next appointment which is not until March ----- I have no idea if I can have the tissue checked. It will depend, according to my research, whether it was preserved in wax or frozen..... and some labs only keep it 5 years and I'm past that!

I don't know what your beliefs are but will tell you how I decided to go with what this dr. said.
After much prayer and asking for wisdom for the dr. to tell me the right thing to do ---- and talking to others that had him for their BC..... when he told me what he thought - I just went with it.

I was very naive and didn't know much about BC. Like most of you, I've learned more than I ever wanted to know!
Thanks again,
Mavis

[chrisy]

Hi Mavis,

Ahhh yes, sometimes a little too much information is just what we need to think oh my gosh, what does THAT mean?!?!?!

Sometimes it means nothing at all; and it's not a bad thing that your team has consensus that you are doing well. 5 1/2 years out is indeed "doing well". Very well!

I wouldn't read anything into the fact that your report had numbers, and your friends' didn't. It very much depends on the facility how they report these things. So the fact that you had numbers and someone else didn't does not mean that your number would have been higher.

A couple of other thoughts...
At the time of your diagnosis Hereceptin was still in ongoing clinical trails in the adjuvant setting (to prevent recurrence after early stage cancer such as yours). It was not approved for early stage BC, only for metastatic. So a borderline Her2 status may not have changed your treatment recommendations - and it is unlikely you would have been treated with herceptin.

Take heart from the fact that you are several years out from your initial diagnosis; the longer you go without recurrence, particularly with Her2+++, the better chance you will not have a recurrence.

[MAVIS]

chrisy,
Thank you and I know that I am very fortunate to be this far out - especially if I am even border line positive.

Thanks for the info on Herceptin --- and to Becky --- thanks to you for the info on the 2 - 3 years . I did not know that.

I so appreciate you ladies taking the time to "talk" to me about this -- when you are having such a time of it yourself.

I have been having anxiety attacks over this for a couple of months and finally decided to ask those of you that know something about HER2. Thank you for being so kind as to answer.

I will -- in return -- help every one I come in contact with that is going through this journey.

I have told our pastor that any ladies that need someone to just talk to --- I will be available.

When I was dx. I knew no one and did not have the Internet.

Thanks so much!
Mavis

[Rich66]

"My surgeon specializes in breast surgery and all the female drs. and nurses at this breast center go to him. He did not think I needed chemo"

From my mom's experience, I have to say surgeons should do surgery, med oncs should do medicine. I found my mom's surgeon a bit lacking in the medicine area. This was back in Tamoxifen/Aromotase revolution days where it was a hot topic (still is). When I used the term SERM, he gave me one of those confused looks dogs give you.
Ok..enough.

You might get the tissue tested since there may be vaccine trials available without recurrence. Positive Her2 results might give you leverage for higher follow-up vigilance.

[MAVIS]

a vaccine? for what?

[Rich66]

To prevent recurrence. I think there are various kinds. but you might be too many years out to qualify. Have you considered getting an appointment to get acquainted with a medical oncologist? They could coordinate any follow up care/checkups and discuss things like this with you.

[MAVIS]

Thank you Rich66
I have waited this long ---- I think I will talk everything over with my Dr. when I see him again.
If anything comes up I have access to him 24/7. He is available to all his patients anytime. Very unusual Dr, and very up to date and informed.

Mavis

[cynthia1962]

Hello everybody;

Newby in the house again.
You made me look at my pathology report for numbers. I don't know what none of it means but here it is Her2neu specific immostain tissue; 10% buffered. No staining or membrane staining in 10% of tumor cells 1+negative. Faint membrane staining in 10% of toumor cells only part of the membrane is 2+ week postive. Week/moderate complete membrane staining in 10% cells 3+ strong positive. Strong complete membrane staining in 10% tumor cells. So I have three numbers what do they mean anybody no.

[MAVIS]

CYNTHIA,

I sure don't know -- but some one on here will know, I'm sure. I would like to know if that is all it says about HER2. Isn't there somewhere that it says Negative or Positive?

BTW --- I've done a little more research and Chrisy, you were right. In 2004 I would not have gotten the Herceptin anyway.... because they were only giving it to 3+ and/or metastatic ladies.
Sooooo, other than having chemo - I got all they could give me.

Cynthia,
Hope you get some answers.

Mavis

[Lien]

Hi Mavis,

I was diagnosed in 2004 as well, and didn't have chemo. I'm almost 6 years out from diagnosis and only had rads and hormone tx. I was talking to my doc last month, at my checkup, and he said that they probably wouldn't give me Herceptin now either. They are seeing some people with severe side effects, especially those who are very sensitive to all kinds of things. I have severe allergies and intolerances, so I didn't do chemo or herceptin either. I'm still doing well.

Jacqueline

[Lien]

Oh, I see I forgot to mention: I was her2 ++ as well. So borderline. The hospital where I had my rads retested, but I never found out whether they did a Fish test or not, so I guess it's borderline. After all this time, I really can't be bothered to ask. I survived and I can't change what was done 5 years ago. So I decided that all the anxiety was keeping me from living my life to the fullest.

Statistics about treatments have very little impact on the individual patients situation. Even if our odds are very good, we could be in the tiny group that has bad luck.

You've done all you can to keep your cancer from recurring and it has worked well.

My take on this is: If it ever comes back, I will know more about treatment than I did the first time and I'll be better equipped to deal with it. I will know what to do, whom to aks, where to go for second opinions and I'll make sure I get the very best care available to me. For now: I'm alive and trying to have as much fun I possibly can.

Hope this helps a little.

Love

Jacqueline

[MAVIS]

Jacqueline!

Your post is exactly what I was hoping to see! (I appreciate all posts and opinions) - but your's is so similar to mine, and you do understand my particular situation.
It was wonderful to see that you are this far out!
I do agree with you about obsessing over this .... and I was doing pretty well until I read that path report and I let it throw me into a tail spin!
Thank you for your input and taking the time to make this ole' gal feel better!
May I ask -- are you still taking Arimidex? My dr. would not help me decide and said it was up to me! I almost made myself sick over that decision and finally went off in May. In his office he said that almost 100% of women with my dx. go off in 5 years if they are having severe se's.
The fatigue and mood swings were the worst for me, besides the joint pain. Still have the joint pain - but not as bad, and the brain fog lifted within 2 weeks! Fatigue much better and what is left is probably old age creeping up!
Now that I know I am borderline HER pos...... I wonder if I should have stayed on the Arimidex? I understand there is a study about women like me staying off Arimidex for a couple of years - then going on Femara, or Evista.
If you don't mind me asking - if you are still on Arimidex - why you made that decision?
Thanks again.
Have a wonderful day!
Mavis

[cynthia1962]

Mavis

Yes, it says 3+ Strong Positive - Strong complete membrane staining in >10% of tumor cells.

[MAVIS]

cynthia,
I don't know as much about this as some of the others on here, but you sound like you will be taking Herceptin and from what I'm reading it is a wonderful med......
I don't know what all the other stuff means but if it says 3+ strong positive that is probably the one that is most important.
Some others will be able to tell you more.
Mavis

[julierene]

Yes, being 5 years out is a huge accomplishment. A long time ago, back in 1991 I gave my blood for research. We had a huge line of cancers in our family, and they wanted to test me after my 5-year old brother developed rhabdomyosarcoma after my mother had just died at 33 from breast cancer. I never heard anything back, I was 15 years old.

When I was having my 3rd child, I was diagnosed with breast cancer at 28. Then 9 months later, my 5 year old daughter was diagnosed with adrenal cancer. They "tested" our genetics again and said we had Li-Fraumeni Syndrome. It really angered me, that I had this horrible suspension that they tested me on that back when I was 15.

I did a whole bunch of research and searching to find that pediatric oncologist of my brother's and found that they had indeed tested my p53 gene, but the whole thing hadn't been mapped out yet. As far as they knew, we had no Li-Fraumeni, or the chances were very low. They had tested Exon 1-9. Ours fell into the 10-12 last section, and it took them over 10 years to realize we were one of those unfortunate families. For years, I dealt with knowing I had unknowingly passed this gene to my other 2 children.

Now my own dx was supposed to be Stage 1/2a and 89% chance of no recurrence. After I begged my oncologist for HER2 test, and it came out positive, he wouldn't give it to me because it wasn't approved for early stage breast cancer. My ex had drug me out to podunk Illinois, and I had begged for him to take me back to the city so we could deal with all of this crap. I wanted Herceptin. But I couldn't get him to move back, and I felt like I needed my husband so badly. So now, my cancer is spreading everywhere, my ex cheated on me 5 years before I ever got cancer... now he is married to someone else. I feel so cheated and sh.t on that I can't even hardly manage my daily life.

[mcgle]

Mavis

Hope I'm not tempting fate here, as my 4 year post-op mammogram and ultrasound are due this week!

Similar pathology to you, but grade 2.

But I was HER2+ (2+) which tested positive by FISH, but only weakly so (2.71).

Had surgery, rads and tamoxifen, and so far, so good.

Hope this helps.

Mcgle (UK)

PS A high ER / PR score (mine was) is unusual with HER2+ bc, but not unheard of.

[MAVIS]

julierene,

I am so sorry, and I know that just sounds lame, but dear, I have no words!

Reading your post breaks my heart!

You indeed did find out very late what you should have been told early on!
You have been through so much, and are so young.

If it will not offend you I will put you on my prayer list.
I just don't know any thing else to say.
God bless and be with you.
Mavis

[MAVIS]

mcgle,

Thank you for that. It does helps every time I hear from some one that has similar circumstances, and are doing well.

I know what you mean by tempting fate and I really hope you have good results from your upcoming appt. I get the heebie jeebies every time I have to go for mine..... and last time I got a call back. (Turned out it was a batch of bad film and everything was fine with me). Things like that ----- and reading your path report and finding out you are really HER positive are some of the things that drive us batty!

Thanks again for the incouraging words.
Mavis