HER2 learning more is it a bad thing?

sweetsunflwr · 08-17-2011, 06:36 AM

I am learning more about HER2, I have ER/PR+, HER-2 3+, I had a bilateral mastectomy March 2010, no chemotherapy as my lymph nodes were negative. I am only on tamoxifen daily 20 mg. I am very confused as I am learning more and more about my disease. I am very concerned with the fact that I didn't have chemotheraphy. My tumor size was 1.5 mm which was very small but I am so worried about this aggresive form of breast cancer that I had. I only go see oncologist every 3 months to check my blood - then visit with him when results come back. I also have CT and Bone Scans to make sure the cancer hasn't came back. I don't know if I am on the right treatment and I am going to go talk to the oncologist about my options. I am only on Tamoxifen and no other treatment has been an option for me.. just a little freaked out when I read some infomration about the HER2 in breast cancer... **The Her2 Receptor is associated with POOR Prognosis in patients with breast cancer** this statement scared me to death... Any information would be great I am newbie and posted on the newbie forum but also wanted to post here. My diagnosis was DCIS, Stage 1, HER2+/ER+/PR+, grade 3, node negative, which at time of surgery 3 weeks later to have my breasts removed it had turned into Invasive Ductal Carsinoma HELP!

suzan w · 08-17-2011, 09:38 AM

You can see by my profile how aggressively I chose to treat my ER/PR + Her2 +++ small tumor, no node. No regrets. I think Herceptin saved my life. My suggestion, get another opinion. Good luck!!

sweetsunflwr · 08-17-2011, 09:57 AM

Thank you Susan. I went to a website and read up on Herceptin. I do believe I need a second opinion. I have been on tamoxifen for over a year now. I started treatment in April 2010. I have got to get the right treatment for me. I do not think it is tamoxifen? Why would my oncologist put me on tamoxifen if I have HER2+? Makes no sense to me? My Mother was put on tamoxifen after her right breast was removed and 6 months later the cancer hit her bones and she died within 2 years of her diagnosis. I do not want this to happen to me. I am scared of tamoxifen I guess you would say... I have been reading so much information on this and now I am in question as far as what is the best available treatment for me... Going to make an appointment as soon as possible....

sweetsunflwr · 08-17-2011, 10:24 AM

I just think it is strange that doctor ordered no chemotherapy could that been due to the tumor size and also node negative? There is so much to learn about this disease and if you are not up on it you get lost in it all. I just had my bone and ct scan in May they were both negative... I mean is there anyone out there that has been on tamoxifen for the full 5 years and has had no recurrence being HER2+? If there is please reply - I just need more answers... I am having those same scary feelings as I did when I was first diagnosed. I hope that my oncologist or his nurse can sum it up for me.

bejuce · 08-17-2011, 11:09 AM

Hi ladies,

Sorry that you had to join us. There
are lots of positive stories on this site - one member was stage 3C, had two kids post diagnosis and is 5 years out. I plan on being here for a long, long time and so do everyone else on this site. There's a lot of hope for us HER-2+ folks. You can search for those stories in the search window.

Btw, I had one oncologist tell me that out of 50 patients he's treated, only 2 have recurred and even those two are doing fine.

ElaineM · 08-17-2011, 11:22 AM

If I were you I would get a second opinion as soon as possible.
I think it is a good idea to consider some Herceptin in addition to an anti hormonal medicine like Tamoxifen if chemotherapy is not recommended.
Take good care of yourself.

sweetsunflwr · 08-17-2011, 12:07 PM

Elaine,
Do you know if you can take tamoxifen and herceptin at the same time? Or does anyone know?

Becky · 08-17-2011, 01:06 PM

You can take Herceptin and Tamoxifen at the same time and they work very well (synergistically) together with the Herceptin taking care of the Her2 and the Tamoxifen taking care of the ER/PR.

wlproctor · 08-17-2011, 01:19 PM

on your original post you wrote: "My diagnosis was DCIS, Stage 1, HER2+/ER+/PR+, grade 3, node negative, which at time of surgery 3 weeks later to have my breasts removed it had turned into Invasive Ductal Carsinoma"
DCIS would be stage 0, so I'm assuming you have micro-invasive IDC to be stage 1....
I guess that might be borderline and since it's not in the lymph nodes maybe your doctor thinks the MX is enough, but I think it warrants a second opinion. It might only be a small chance that it could have moved out of the breast, but I'd rather be on the safe side myself. Herceptin has few side-effects and generally well tolerated...but it is an expensive drug (8k+ per treatment) so maybe the pathology has to meet certain criteria before the Insurance co. would pay....

tricia keegan · 08-17-2011, 01:36 PM

I'd also agree on getting another opinion and maybe herceptin may still be available to you?

sweetsunflwr · 08-18-2011, 05:34 AM

Just to clarify... My initial diagnosis March 4, 2010 after my biopsy was DCIS - 3 weeks later on March 29, 2010 when I went in for my Bilateral Mastectomy, the pathology report showed it had grown and became Invasive Ductal Carsinoma with a tumor the size of 1.5mm Stage 1 was then put in place.

KirisMum · 08-18-2011, 06:18 AM

You need to be on Herceptin. At the time you were diagnosed, I'm not sure Herceptin was standard treatment for very small tumors, such as yours, but it is now. You need to stay on the Tamoxifen, as well--as Becky pointed out, the tamox is to inhibit estrogen, which your tumor is positive for.

My daughter is on both - tamox every day for 5 years and Herceptin every three weeks for a year. Definitely find yourself another oncologist, preferably at a major cancer center.

Most recurrences of HER2 cancer happen in the first two to three years, so you are doing okay so far!! But best to cover all your bases. Good luck!

sweetsunflwr · 08-18-2011, 06:28 AM

I don't believe we have any major cancer centers here in Wichita. We have one location where everyone gets treated here. And it is so busy at all times. I am going to discuss this with my oncologist in the morning I have an appointment with him at 10 a.m. - I am going to push for the Herceptin I will do whatever it takes to not have recurrance. Is herceptin like chemotherapy? Is it taken through a vein? Or pill form? Can someone please advise? Thanks

KirisMum · 08-18-2011, 06:35 AM

Yes, you get it in an infusion, every three weeks generally. It doesn't take long - maybe half an hour or so. The protocol is often to start you off with some chemotherapy to make it "kick in," though - usually Taxol. What's your insurance like? Lani on the board here is a wealth of information, as is Jackie, and they can probably give you links to the latest research that you could print up and show to your oncologist.

Here is an article to get you going. http://www.breastcancer.org/risk/new...h/20091104.jsp

Don't be scared. With Herceptin now, HER2+ tumors are sometimes considered the best kind of breast cancer to get, because they're so treatable.

KirisMum · 08-18-2011, 06:39 AM

P.S. I just read the article myself, and your tumor was so small (1.5mm) that you may actually be getting the right treatment, as Herceptin is not recommended for tumors smaller than .5cm. Maybe print out the article and bring it to discuss with your oncologist, and a second opinion, even a third, is always a good idea.

Keep us posted. You're in our thoughts.

sweetsunflwr · 08-18-2011, 06:40 AM

KirisMum-
Thank you for the information. One more question, if they start me out on some chemo such as what you listed will I loose my hair? I mean how much chemo does one have before hair loss? I am more certain today than I was a few days ago, this website has helped me out so much. I feel bad asking so many questions but I want to know exactly what needs to happen for my treatment. Thank you for the website I will check it out. I appreciate it so much. Also, will a port need to be inserted for me to get the infusion? I hate needles and the Cancer Center here where I go has a hard time getting blood due to deep veins... let me know. again thank you so much!

KirisMum · 08-18-2011, 06:45 AM

My daughter did lose her hair on Taxol. But it comes back, and there are wigs. Some people don't lose their hair, just get some thinning.

NEVER feel bad for asking questions!!! How do you think we got all the answers? ;-)

But we can give you general information; the best specific information for your case will come from your treatment team. Some people get ports, some don't. It sounds like you would be a candidate for one if you needed regular infusions. My daughter HATES needles too, has never got used to them though she has had hundreds of them, but she didn't get a port because she's an equestrian and they were worried about her falling off her horse and landing on it. She has tough to find veins, too, so she just goes on getting stabbled, grinning and bearing it. Ugh.

Everyone's different. ;-)

sweetsunflwr · 08-18-2011, 06:53 AM

KirisMum-
Thank you for all the information, tell your daughter I feel her pain with the needles I hate them things! My last CT and Bone Scan they stuck me 7 times until they finally got a vein. You information has greatly help me this morning. I am taking the article and going to see what Dr. Reddy tells me. Regardless my gut feeling say to do this for me for my life... If he refuses then what do I do? Request another doctor in that same office to state his opinion? But what about mine? Regardless it wouldn't be a bad thing it would be a positive one I think...

KirisMum · 08-18-2011, 07:24 AM

You might have to go farther afield for a second opinion - not sure how good an idea it is to stick with the same practice. I'm not sure where the nearest major cancer center to Wichita is - I'm in the NorthEast, but maybe others on the board here can suggest some place. The University of Kansas hospital in Kansas City seems like a good bet.

If several competent oncologists agree that your tumor does not warrant treatment with Herceptin, I think you have to trust their opinion. They are all trying to balance potential harm from side effects against the risk that your tumor will come back.

You might want to look into getting into a clinical trial somewhere. Treatment is usually free, and you are contributing to research about unknown factors. There's a section here on the board about clinical trials.

I feel for you--the fear of recurrence is awful. I am dealing with that now regarding my daughter, who is doing fine, but I am up most nights waiting for the other shoe to drop. But you can't let your (understandable and normal) fear cloud your intellectual judgment. Hopefully talking to some experts will ease your fears.

Let us know what Dr. Reddy says.

sweetsunflwr · 08-18-2011, 07:44 AM

I believe your right - But I do trust my oncologist and I know even if I have my doubts about what he says he will do what I feel is best for me. It is my body and my decision. We will see what happens. Cancer sure is a scary thing and I pray that one day we find a cure for it there are so many that have it and it is so sad to me. Keep your chin up and think positive as I have tried to stay positive but it is always there and never goes away no matter how hard we try... xoxo hugs to you and your baby girl... and thank you for all the information this morning....