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HER2+

pscheer
Posts: 56
Joined: Feb 2010

I am HER2+ and went for my 6 month after radiation mamogram last week. The technician made a remark that I am high risk for recurrence because my nuclear grade is 3. This is very upsetting to me. I thought that since I was stage 1 and no lymph nodes had cancer, I was very low risk for recurrence. Also, I am getting Herceptin, so that is supposed to really help reduce my risk. My nuclear grade was 3,because HER2+ is aggressive and reproduces rapidly. But I am only stage 1. Largest tumor was 1.5cm and the others were smaller. No cancer in the 4 sentinal nodes removed. I had Taxotere and Carboplatin for 6 rounds with Herceptin and am going to be done with Herceptin in November. I told my surgeon about the remark and my surgeon said I was not high risk, but no one can say what will happen.

Anybody know about these things?

By the way, my mamogram was fine. I have not ever had an MRI or CAT Scan.

survives
Posts: 255
Joined: Feb 2010

First off, your "technician" should NOT have made that remark. She is not the expert here. Second, I do like the way your surgeon answered, as truly, there are no guarantees in life. It sounds like you have had good treatment, and have done all that can be done RIGHT NOW to keep you healthy. Who knows what will be in our future as to really keeping us healthy? Even cured??

I, too, am HER2+, BUT did not receive any chemo because I had a mastectomy, and margins were clear, no nodes were involved. At the time of my diagnosis, only Stage II-IV were given Herceptin. I would still be in the gray area, as my tumor was <1cm. Way less. So, will I have a reoccurrance? Don't know. All we can do is stay vigilant, look to the future, and hope for the best.

Here's to your continued good health.

survives

Marsha Mulvey
Posts: 597
Joined: May 2010

I do not ever want to frighten anyone, but I would urge both of you ladies to remain vigilant. Perhaps the technician actually knew more than the surgeon about this specific type of cancer. If your HER2+ cancer is also ER-/PR-, it is quite a bit more likely to recur than other types of cancer and we know that any CAN recur. Being Stage I at initial diagnosis does not necessarily make it less likely. For more definitive answers, ask your oncologist and no other health provider.
I really hesitated to reply to this but have acquired a lot of knowledge about this specific cancer because it's what I have. Best wishes.
Marsha

pscheer
Posts: 56
Joined: Feb 2010

I am also ER/PR negative. Thanks, I see my oncologist on Friday and will ask.

Kittycat15
Posts: 8
Joined: Sep 2010

I am also ER/PR- and HER2+. I was at the low end of stage 2 and node negative. That technician was out of line to make that comment to you. Your oncologist and you are the decision makers on your treatment. As the others have said, we must be vigilant as the cancer can recur, regardless of the stage we were at when diagnosed. The technician's comment is certainly something to ask your oncologist about since it is clearly bothering you. (It would me too.)

Take care,
Kitty

survives
Posts: 255
Joined: Feb 2010

I am triple positive. I am taking Femara, and have been on it for four years, and have relatively well. So, keeping my fingers crossed.

Vigilance is now my new middle name. The guard will never come down, and my innocence is forever gone. No longer will I take my health for granted. Being denied chemo shook me to my foundation, but then, as I moved on, I learned that even with chemo, there is really no guarantee. There's no guarantee that I won't fall of the step stool this morning as I tackle my kitchen cabinets!! The point here is there is no guarantee with anything in life. If you like in the middle of that word...you will see "if".

survives

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

Congrats on the clear mammo!

Hugs, Angie

new2me's picture
new2me
Posts: 176
Joined: Jun 2010

Let me start off by saying that we are all different - But I want to share with you what my Oncolist sait to me at my last appt. (last week) I was very concerned because I heard rumors that once you have B/C the chances are very high of it coming to the other breast. Dr. Patel said that because my cancer is HER2+ my chances are NOT has high. If it were Estrogen fed then Yes, it would but mine is not. I asked him what % is there of it going to the other breast. He's 10%. 10% with all I'm doing. Chemo cocktial is Taxatore, Carboplain and Herceptin and then Radiation when finished. I had 15 lymph nodes removed and 2 were cancerous and had a lumpectomy in May. I was so relieved when he said this. I trust my Dr. and love him very much. He is the founded of CBCC here in Bakersfield and is affliated with UCLA.
I know we will always have fears in the back of our minds but we can't let it control us. We do all we can do but after that, it's all in Gods hands.
I hope this makes you feel better and it sure did me.

Love always, Kelly

Marsha Mulvey
Posts: 597
Joined: May 2010

Unfortunately, the other breast is not the only place in your body that can have recurrent breast cancer. It can return in such places as the brain, liver, lungs, etc - it's still breast cancer even when it shows up in those places. There is a publication that states ER-/PR-/HER2+ cancer is 60% more likely to recur.

The simple reason that ER-/PR-/HER2+ is so very aggressive is this:
When you have estrogen receptors, only cells that contain estrogen can adhere causing growth. When you have progesterone receptors, only cells that contain progesterone can adhere. If you are both ER+ and PR+, cells containing either can adhere. But the big difference is that when you are ER- and PR-, your receptors are simply protein - meaning that ALL cells can adhere causing a much more rapid growth.

God bless us all.

Marsha

new2me's picture
new2me
Posts: 176
Joined: Jun 2010

I'm so sorry - I forgot to mention the most important part of the conversation with my Oncologist - he said the percentage dropped because my cancer was Ductal not so much because it is HER2+.
sorry for the confusion - thats what i get for working while I post. :)

LOve, Kelly

pscheer
Posts: 56
Joined: Feb 2010

Mine is Ductal, too. Yay!

new2me's picture
new2me
Posts: 176
Joined: Jun 2010

Go to this site and read other HER2+ stories. IT will make you feel so much better.
http://her2support.org

Bella Luna's picture
Bella Luna
Posts: 1571
Joined: Aug 2009

First of all, I cannot believe that tech said that to you. He/She needs to be reprimanded and sent to "How to Talk to Survivors" class. Holy smoke.

Just so that you know, I am HER2+, ER+, and PR+. I am Stage 1, Grade 3, no lymph node involvement. I was on the same cocktail as you( Taxotere, Carboplatin, Herceptin)and underwent radiation treatment. I am done with treatment and am scheduled to have my port removed come Wednesday-Hooray! Also, I am on Tamoxifen.

I have done all that I can to fight the beast. I have placed my trust in God and my doctors and believe that I am ok. I know I have to live with this for the rest of my life, but I will not let it consume me. I have a husband and a daughter who need me. I prefer to spend my time doing what I love with people that I love rather than spend my time worrying over what if's. I know this is easier said than done, but I have come to a point in my life where I cannot let the two reside in me. Either I live or I live with worry. I chose to live.

My best to you on your journey. Take care, God bless.
BL

carkris's picture
carkris
Posts: 4523
Joined: Aug 2009

I had estrogen receptor neg cancer in 1994, in left breast 2009 dx with estrogen positive cancerin right breast I was told that my chances were not increased, neverthe less after a couple of biopsies I decided to seek propholactic mastectomy. but I was too late I already had it. I guess i fell on the bad side of the stats.

pscheer
Posts: 56
Joined: Feb 2010

I saw my Onc today and told him what the tech said to me when I got my mammo/ultrasound about my being high risk. He said he was going to speak to the Dr at the Mammo clinic about it. He said what the tech based the statement on had nothing to do with anyone being high risk. Granted, he said I am high risk for recurrence (which he told me before, but we know how the memory is during chemo) but not for the reason the tech said. So, I have decided that this means I must take advantage of feeling good and not waste any good days. The reason I really needed to know is this-I have hated my job for 25 years and was going to retire in a year and a half. Now I know I need to keep working at this job because if I retired, my pension wouldn't be enough to pay the bills and I would have to work somewhere else to make ends meet. My current job has FMLA and I have 900 hours of sick leave accrued even though I already used 500 hours last year during surgery, chemo and rad. I used to never be sick. Also, I know they won't fire me for being ill. So, big deal that I hate my job, I am just soooo grateful to have good benefits. I have always drug myself to work when possible, so much that they were amazed. (Kinda wished I'ld stayed home).

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

I can't believe the tech told you that either. You should turn them in, as, they don't know.

I wish you all the best in your treatments and your future.

Hugs, Angie

lauri67's picture
lauri67
Posts: 15
Joined: Sep 2010

I'm HER2, BRCA2 positive and er/pr positive. I was scheduled for a mastectomy but just had a lumpectomy friday because of problems with surgeons etc. The mastectomy will be at a later date. They do want to start chemo in a few weeks, I'm still not positive I want to do that but most people I speak to say to do it because of the BRCA positive results. I think I'm more nervous about the chemo than the surgery. The lumpectomy went well, glad to have the little beast out but i am more sore than I expected!

pscheer
Posts: 56
Joined: Feb 2010

Being nervous is normal. Better to be nervous about chemo than nervous about wondering later if you should have done it and didn't. We are all her for you. We all get scared. You can do this! Hugs!

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