Just diagnosed with Her2+ positive level 3 Stage 1 breast cancer

i am clinically stage 2a. her2 positive. my onco told me in the beginning that her2 positive nowadays have a very good chance of full recovery thanks to Heceptin and recently Perjeta.. i am just in the beginning of this journey and i am very thankful for the advancement in science when i was diagnosed. chemo is no fun but there are meds to help with side effects. plus there is this wonderful wonderful online community that has been very helpful to me from the beginning. goodluck!

I have recently diagnosed 0.9cm node negative her 2 positive breast cancer. Underwent lumpectomy and sentinel node biopsy.now got my first taxol plus herceptin. The worst body aches from the taxol but thankfully short lived. Will be better prepared next week.

Elaine Therese --you mention that there are ladies getting only herceptin and perjeta for stage 1? I asked my oncologist about Perjeta but she said she would only use perjeta for women with tumors >2cm.

Barb --please do not refuse sentinel node biopsy or herpcetin based chemotherapy. Her 2 cancers are not good actors and herceptin has changed the face of this disease. As much as I hate the fact that I am in this place in my life, I am glad I have a treatment like herpcetin available to me

Thank you ladies for sharing your experiences. It's a tough place to be in at a relatively young age in life for me, still I take it one day at a time. It's a difficult place emotionally --- one is to be grateful for curative intent therapy ( and I am! ) but at the same time, one gets resentful at this diagnosis --it's a physical and mental journey .

Tara,

Deni1661 is getting just Herceptin + Perjeta, but that's because she's part of a study. Otherwise, yes, most of us get Perjeta as part of neoadjuvant treatment when our tumors are over 2 cm in size. I also got some body aches from Taxol; hope your side effects continue to be manageable!

I had my last Herceptin in December 2015. I DO think the inner angst gets better with time. I've been on hormonal therapy for two years now, and I have mammograms every six months (had a lumpectomy). The mammograms have been clear, and I don't experience much in the way of side effects from hormonal therapy other than hot flashes. So, all is good!

thank you Elaine --so glad you are doing well and all is good with you! It's reassuring to hear from ladies who have gone through treatment and are moving on with life! Especially good to know that the inner journey gets easier with time

Germangirl1 --so nice to hear you have tolerated this protocol well! I am 44 years old going through the same protocol as you. I too will need a second surgery as margins aren't good enough, but I plan to choose mastectomy instead of radiation( very dense breast which didn't show the lump on mammogram, I happened to feel the lump ) --don't want the anguish of worrying about imaging studies in the futur

For those of you who had taxol herpcetin ---did you experience hair loss /eyebrow /eyelash loss ? Or was it only hair thinning ? Nail issues ? I understand these are temporary --but these are what announce the disease to the world at large, so am trying to prepare myself for how much hair loss I shoudl expect on the taxol/herpcetin protocol

Any specific tips on dealing with the bone pain of taxol? It seems like more than the taxol itself, the steroid premedication causes lack of sleep and other side effects --still grateful to get the steroids to prevent any reaction to the taxol,

Wishing all the ladies on this thread the very best!

Germangirl 16--thnk you for the tips and sharing your experience. I will ask my doctor about glutamine and thanks for the Claritin tip for the bone pain as well. Shall make sure to hydrate and exercise . Thansks for the good wishes and will keep you updated --feels really nice to have this support and good wishes here.

Hi Barb, I was just diagnosed yesterday with invasive her2 + breast cancer, I am also worried . I had a lumpectomy a week ago and the pathology report was not what I accepted. I hope we can both overcome and fight this cancer. I also hope to read positive stories of women who are survivors and are still here with us. Hope you do well in your care.

Julie

"No stone unturned." Yes, I agree, very aggressive. With Stage 1 I believe that your chances of living long will be the same with or without chemo. and radiation. You should be able to opt for just the herceptin for a year with your lumpectomy. Regardless of +++. I think radiation is overrated and does more harm. I don't believe in chemo. for Stage 1 or 2 if there are other options. If they don't consider this request above then I would do a mastectomy and pass the chemo AND RADIATION. It's too radical to me. You can rebuild the breast and have a better chance of living without all that extra unnecessary stuff.

her2+ is not something to mess with in my opinion! I had only 1.5mm of her2+ IDC. But I had a very high FISH score, and lots of comedo necrosis, so it was an aggressive bugger. So I went ahead with taxol and herceptin. I tolerated it very well and worked full time and took care of my two small children. It's not so bad. I was only 40, so I threw the book at it. Good luck with your decision.

It is very overwhelming isn't it, and trying to decide the best treatment options adds to your stress. I was diagnosed last summer, had surgery, and decided to go with the weekly Taxol and Herceptin for 12 weeks followed by radiation as well as every 3-week Herceptin until next September. I did get a port put in which I am really glad about - so much better for me than having the nurses trying to find a good vein each time. I managed the Taxol very well and the side effects which were tolerable went away very quickly once the treatments ended. I have no side effects from the Herceptin except an bit of fatigue (could be also because I'm older). My thoughts were to utilize everything that was offered to me so that I could be confident I had done everything possibly to ward off a recurrence.Good luck with your decisions and treatments!

I have to share with you the story that happened to me. Surgery 5 years ago BMX. Large dcis ...2 very tiny 4mm IDC. These two separate tiny tumors did not meet protocol at that time for chemo. Onco struggled with it because he knew how sneaky her2+. How the path rechecked and even sent out. He did not recommend chemotherapy due to side effects could include leukemia etc. My sentinel node was negative.

2 years later accidentally found over 50 tumors in my lungs bilaterally. Of course now chemo without reservation.

I am only sharing to tell you beware of Her2+....it can be very sneaky and devastating.

Good luck on your mission to find out what is right for you. That is the only way to do this

Hi, Barb,

Hope you are over your initial shock...I had the same reaction as you---all this for a tumor the size of a pea? But I'm so glad I decided to have chemo----I just finished my 12th and final Taxol/Herceptin combo last week and didn't have any problem tolerating it. I still went to work and played tennis...I didn't lose any hair at all until the 10th infusion and while its shedding a lot now I predict I'll keep about 80 per cent of it. My friends tell me I look great and I think I do too---I thought I would look ten years older by the time I was finished but no! My blood counts dipped a little but I felt fine and never caught so much as a cold. Herceptin has managed to turn a very aggressive cancer into something very treatable in the early stages, and this protocol is not to be feared! I hope you decide to go ahead with treatment. I think you will rest easier for the next 5 years knowing you did all you could to eradicate and CURE your cancer

Hi, I was diagnosed with Stage1A, Grade 2 HER2+, like you.  My grade is different.  I too thought this is sooo aggressive, the treatment for a Stage1.  But. I finished my 12 taxols, and am on Herceptin for the rest of the year now, like you.  I opted to do a mastectomy, so I didn't need radiation. Mine was extensive though, with a large DCIS with some focal invasion. But I had Paget's of the nipple, as well.  The whole thing is scary, but it goes by so quickly, before you know it, it will be finished.  Just being on the Herceptin is ok at the end.  I only have joint stiffness.  I didn't want to do my treatment either, who does?  But, in the end, I would not be able to sleep if I hadn't done what the Oncologist had suggested.  He gave me two scenarios to pick from for treatments, and not doing it was not one of them.  So, that was not an option.  So, I chose the less aggressive 12x taxols.  And trust me I was devastated, scared and upset about the whole thing. Why or how could this happen to me?  But once it is all done, it's done. Just focus on the end.  I'm 5 weeks out of finishing the taxol.  You can do it.... prayers and hugs, take care.   

Also, as for the side effects of the 12 Taxols.  My hair did shed starting on the 6th treatment and onward.  Everyone is diff with this.  I never really lost my hair, but I chose to cut it down quite a bit to keep the tangles at bay.  I'm 5 weeks past my last Taxol, as I said, and it is growing in all over.  Hair does grow back in. And trust me, that was the most devastating part for me.  It just shows you, you can get through anything, if you have to.  Again, good luck... you will do ok.

I had a 6mm her2 positive, grade 2 tumor. I had radiology only and have been taking Anastrazole for a few months with no side effects. It's such a hard decision. I opted to not do the Chemo and I am pretty comfortable with my decision.

New here and I have a lot of anxiety, esp. about the HER2+ part of my diagnosis, since HER2+ seems to be aggressive from what I've read. I am nearly half-way through neoadjuvant TCHP. I feel so fortunate to have health insurance, I can't believe how expensive chemo is. Wow.

I did the OvaNext genetic panel and was negative for all of that, and my twin sister was too. I pray she never gets cancer. The doctors wanted to know genetic results before I make a surgery choice. So, I'm not sure what my surgical options will be after the chemo - lumpectomy? Mastectomy? I'm leaning toward mastectomy because I'm a worrier and have very dense breast tissue. Too much to think about. I wish you all well!