Community Member
2 years agoI have Her2 positive, grade 2 cancer. Has anyone here had a similar diagnosis and been treated with only Herceptin (without Chemo). I was diagnosed with DCIS and Paget of the beast last September and had a lumpectomy removing my nipple and the DCIS. I was not offered radiation after surgery as I am over 50 the margins of the tumor were clear. I have now been diagnosed with a very small invasive cancer.
Accepted Answer
Treatment approaches for HER2+ breast cancer can vary significantly based on many individual factors that only an oncology team can fully evaluate. Many community members have shared experiences with different treatment combinations, and connecting with others who have similar diagnoses can provide valuable perspective and support during this journey.
3+ patients found this helpful
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6 months agoI had left sided DCIS grade 2 back in 2009. I was 53. My surgeon wanted me to do 33 radiation treatments & 5 years of Tamoxifen. I got a second opinion to find out what the risk was with & without radiation & Tamoxifen. I decided on surgery only. I went for a mammogram & ultrasound checkup every 6 months & after 5 years, once a year. It never came back. Then in Oct. 2022, I went for my yearly checkup & they found stage 1A, (node negative) triple positive invasive ductal carcinoma on the right side, unrelated to the left sided DCIS. (I was on bio identical hormone replacement for 13 yrs, probably a bad choice.) I got 3 different oncology opinions. The standard of care is 12 rounds of chemo (once a week for 3 months) with Herceptin & Taxol. Then a year of Herceptin every 3 weeks, either thru infusion or shots in the thigh area. I did do radiation after the surgery (had to have a second surgery because she did not get clear margins the first time). I opted out of the chemo, but did do Herceptin Hylecta shots in alternate thighs. I was supposed to do 17 shots & got through 8. I had some very bad side effects which most people would have put up with, but it affected my joints & I got such bad eczema on my face & eyelids, that I could barely see. I don’t do well with any kind of drugs. I have to get my heart checked every 6 months because of the Herceptin, which can cause heart problems. I keep physically fit & eat vegan, and pray for the best outcome. So far so good. I still have so many unanswered questions from the surgeon and oncologist. Best wishes to you. 🙏
Community Member
6 months agoI was Her2 positive with Occult Breast Cancer... Meaning it didn't present in my breasts at all, only in the left axillary lymph nodes. I did do chemo and I responded 100%. No cancer left. I then did a DBL mastectomy, by choice and am doing 28 rounds of radiation. Radiation because of so much lymph node involvement. 8 removed under the arm and one on the clavicle that couldn't be removed as it is under the muscle. I will be doing #16 out of #28 of radiation today... I am on herceptin/Psego shots every 3 weeks in my thigh. I will do these for a full year from the start of chemo...I did them with chemo as well. Everyone seems to have "the same but different" treatments. I hope this helped... 💋
Community Member
6 months agoSounds like you are doing great with your treatments. You are very positive. They took out 3 nodes & I only did 16 rounds of radiation (what was recommended, so the full treatment) & I have lymphedema in my breast & around the side. I went for lymphedema therapy which seemed to improve things a bit. I think it helps a lot to trust & have faith in your drs.
Community Member
6 months agoHi Valerie I too was just diagnosed with HERS+ er/pr negative & super early caught thank God Stage 1 Grade 1 and have been recommended herceptin treatment adding perfecta at first they wanted to do it before surgery adding chemo however my surgeon recommended to remove the tumors first (I had 3 small positive tumors) he stated the final pathology would truly pave the systemic route. I have done a lot of research & I feel confident in the targeted therapy of herceptin/perfecta with radiation. I am praying my path comes back in my favor to not have to add chemo. I had surgery Friday and feel very optimistic. Have you had surgery yet? Praying for your journey 🤲🏼
Community Member
6 months agoValerie what's your update?
Community Member
6 months agoI was, diagnosed with stage2,4mm tumor,lumpectomy, sick as a dog on herceptin did 6 months, tried all anti estrogen drugs, caused horrible leg pains at night. It’s 2 years later and now have another spot on same breath.. radiation was not done
Community Member
6 months agoHaving another lumpectomy, it is no longer HR2, just estrogen and progesterone positive only 4mm, going to do targeted radiation… will keep you All posted
Community Member
2 months agoTreatment approaches for HER2+ breast cancer can vary significantly based on many individual factors that only an oncology team can fully evaluate. Many community members have shared experiences with different treatment combinations, and connecting with others who have similar diagnoses can provide valuable perspective and support during this journey.
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