Megan: Her2-Positive Breast Cancer

Want more? Check out this post on breast cancer testing, including Her2 status.

When women call the SHARE helpline and tell me they've just been diagnosed with HER2-positive breast cancer, I know how scared they are. Often they've consulted Dr. Google and learned that HER2-positive cancers are especially aggressive and likely to recur. I know, because Dr. Google told me the same thing seven years ago.

I was lucky, though—and so are the newly diagnosed HER2 patients who call the helpline. Shortly before I discovered I had breast cancer, a drug called Herceptin became available. It blocks the growth of HER2-cancer cells and dramatically cuts recurrence rates. Since then, additional HER2-specific drugs have been developed.

The advent of effective drugs has made HER2 cancer less scary, but the treatment is long and arduous, as my experience demonstrates:

I was 55 when I found the pea-size lump in the crease of my right breast. I'd had my yearly mammogram six weeks earlier, but the lump was not in the "squishable" part of my breast. My gynecologist referred me to a breast surgeon, who performed a fine-needle aspiration to remove sample cells for examination. Because the cells were fast growing and highly irregular, an immediate lumpectomy was scheduled to remove the tumor, along with a couple of lymph nodes from under my arm.

The pathology report came back positive for HER2 cancer in my breast and in one lymph node. To remove more tissue around the tumor site and to see whether there was cancer in the remaining lymph nodes, I had a second surgery two weeks after the first. During the procedure, the surgeon placed a port into my jugular vein, since the blood vessels in my arms weren't hardy enough for the frequent intravenous infusions I would need. The lymph nodes were clear, but abnormal cells remained in the tissue surrounding the tumor site. (A year later, concerned about those cells and about changes in the other breast, I had a bilateral mastectomy. You can read about my mastectomy experience here).

Meanwhile I was given a PET/CT scan to detect any evidence of cancer elsewhere in my body. There was a spot on my liver that the radiologist suspected was a metastasis, but the liver specialist I consulted was sure it was a hemangioma, a harmless cluster of blood vessels. It was in an area difficult to biopsy, so he recommended beginning treatment immediately and then examining the spot again to see whether it had changed. If it grew or shrank during treatment, we could assume it was a tumor; if it stayed the same size, it was a hemangioma. (It did indeed stay the same size.)

Herceptin is most effective when given in conjunction with standard chemotherapy drugs. My regimen started with an IV infusion of Adriamycin and Cytoxan every two weeks for two months. I felt lousy, the inside of my mouth broke out in sores, and my hair fell out, but I never threw up, and I was able to continue working throughout my treatment.

Then I was given Herceptin every week and Taxol every two weeks for two months. My long bones ached the day after the Taxol infusion. My fingernails and toenails turned brown and fell off, and my eyelashes and eyebrows disappeared, making me look like giant pink newt.

To help me tolerate the side effects of chemo, I was prescribed steroids, antinausea drugs, antacids, Benadryl, stool softeners and tranquilizers, plus an injectable drug to boost my white-blood-cell count. They helped, I think. But with all the chemicals coursing through my body—and with the shock of being diagnosed with a life-threatening disease—I felt dazed throughout the four months of chemo.

After the four rounds of Taxol, I continued Herceptin alone every three weeks for the remainder of the year. For me, the only side effect of Herceptin was a runny nose.

About a month after I completed Taxol and while I was still being treated with Herceptin, I began six weeks of daily radiation to "sterilize" any remaining cancer cells in my right breast. I was surprised at how little pain radiation caused—about as much discomfort as a bad sunburn.

Because Herceptin can damage the heart muscle, I was given a MUGA scan every three months to test how efficiently blood moved through my left ventricle. My score declined over the year but did not fall below the cutoff for continuing treatment. So nearly 18 months after finding my tumor, I finished treatment.

I thought I'd be thrilled. But I was terrified. All those months on drugs, all those visits to doctors, all those blood tests and scans had made me feel safe. When they stopped, I felt unprotected. So I was relieved that initially I had checkups every three months, then every six months. By the time I was told I needed to see my oncologist only once a year, I was ready to cut the cord.

Although not every woman with HER2 breast cancer will be given the same drugs I was given, and not every woman who gets those drugs will respond the way I did, I think my treatment and side effects were fairly typical. So when I talk with women who have just been diagnosed, I know the road ahead is long and the terrain may be rough, but I feel confident in assuring them that if they put one foot in front of the other, chances are good that they'll make it to the destination of renewed health and that one day the journey will be just a memory.

Looking for more information about Her2-Positive breast cancer? Check out this post on breast cancer testing, including Her2 status.

Author

Megan

Megan is a volunteer on SHARE's Breast Cancer Helpline.

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  • Robin

    Thank you for sharing, I am not so afraid anymore.

  • Tg

    Thank you for allowing me to read your stories. My wife has stage 1 her2 + and is about to begin chemo on Monday . She is 42 years old and a mother of three children . I am heartbroken over this and what she'll have to go through. Ladies I am sorry for all of you have been though. I am looking for Hope everywhere and your shared experiences are inspiring to say the least. When I hold my wife's hand and tell her she'll get through this I will remember your courage and preservance . Thank you.

  • Nancy

    Your story is very similar to mine and I am approaching 7 years this July. I know that it can return at anytime and that with herceptin women have had remission up to 15 years before starting another round…. May God bless us all.

  • Dorothy

    I am 64 yrs old was diagnosed with stage 3 her2 positive feb 2013 had surgery and all lymph nodes removed one positive.After my sixth chemo my bowel perforated in three places lost eighteen inches of bowel and got side passage was home one week and was rushed in with a large blood clot in both lungs. Am now three yrs clear walking four miles a day and go to keep fit twice a week. My hair is still not grown in properly but am hopefull for the future.

  • Kristen

    I am supposed to start Taxol and Herceptin this Thursday. I already had a lumpectomy. What do you think about the chemo causing secondary cancers. And how about reoccurance? Thank you kindly

  • Rebecca

    My name is Rebecca. 5 days before Christmas, I found out that I have Hers 2 positive BC stage 2 1 cm tumor, with 2.5 DCIS surrounding tissue. I had a lumpectomy, but had to have a reincision surgery, because pathology report showed 1 magin unclear. I had a sentinel lymph node biopsy ( 7 removed). 1 was detected positive, the rest negative.

    I am 40, married, and 1 child whom is 4. Being a mother, this was my first fear. I want to live a longer life and see my son grow. With me having negative receptors, my treatment options were limited according to my Oncologist. The fear of death from either cancer or the damage from chemo started to consume me. I have always been positive. Slowly I started to doubt my own self before the battle began. Having my husband in the military made this experience more difficult. We were 1000 miles from any family. I was forced to leave my husband demographically, and move in with family that now co-parent my child.

    My treatment plan is 6 months of Taxol, with Cytaxon. Then 2 months of radiation. Also, Herceptin for one year.

    I'm so scared. The Taxol especially, combined with the Herceptin scares me in regards to heart problems. I start treatments in two weeks. I'm concerned, because I have been battling pneumonia from my last BC surgery.

    I am in the midst of getting a new Oncologist. My last one refused to do a heart check up before, during and after treatment. This made me feel uncomfortable. He told me if you feel like your having a heart attack then go to the ER.

    I was just wondering how anyone felt about this? What tests were performed before, during and after the regimen to monitor your body?

  • JojoRod

    Thank you for posting your story. I had my biopsy and lumpectomy (with clear margins) with sentinel node biopsy recently. I found out that one of my lymph nodes tested positive while one was negative. I recently was diagnosed with Stage 2 and positive for HER2 and the other two receptors. I am having my port put in on Monday, November 30. I am not sure of my chemo and radiation regiment but I have been nervous, upset and trying to stay positive. I am concerned about my how my life style will be, daily functions and interactions with family and friends. I know every story is different but I just was hoping for any advice or anything you can give me to help me through my beginning journey of chemo, radiation and treatments. I won't have my treatment plan until December 3 but was told I would have many tests to include a MUGA test. I am 49 and my 50th birthday is in May. I am really anxious and of course even though I have been through the prognosis, surgery and diagnosis, I know the difficult part of my journey is in front of me. I am truly reaching out for support and to see how you faired with normal activities, work, family and daily living. I just don't know what I should expect to change or do. I have not information yet and I am trying to relieve my mind before treatment.
    Thank you for sharing and thank you for any information you may have.

  • Jennifer R.

    I have the same story except for being on a clinical trial instead of taxol and i was given chemo first then surgery then radiation. Yes HER2 cancer does have a very long treatment process and this friday i am supposed to have my last herceptin treatment.
    My cancer is gone and i am so ready to have my port out!
    Bless you all.

  • Michelle

    My treatment for HER2, Stage 2 Breast Cancer, diagnosed in July of 2013, was identical to Mary's. I just had a 3-month check up and all is clear! However, I find it very stressful living with the thought that my cancer could return. My oncologist told me 2-years cancer-free is the goal.

    Taking steroids during chemo impacted my pancreas. I am now type 2 diabetic on insulin and Metformin. Doing all I can to stay cancer-free as long as possible. Have always been physically active. Just recently am able to get back to my pre-cancer exercise level. The one thing I am doing differently is significant changes to my diet, totally eliminating beef, pork and dairy, and significantly reducing poultry and fish – my oncologist almost did a dance when I told him this.

  • None

    Thank you for sharing your stories. I have been diagnosed with stage 3 her2. I am starting the treatment soon. Reading your stories gives me hope and helps me with my fear. I will think of you everyday as I go through this. Alesha K.

  • sam

    Hi everyone, I am 53 a vegetarian and a health fanatic. I have just been diagnosed with Her2 breast cancer and shocked and I am not coping well with this at all. I don't even take panadol I have never smoked drank a glass of alcohol in my life and breast fed all my babies so I feel very angry that all these obese unhealthy people in life get away without getting cancer and I got it…. which I imagine lots of you feel too.. I do not believe in killing all the healthy cells and the immune system in your body when you need it most however I did have a Lumpectomy to get the cancer out but refused the sentinel biopsy. I am looking into all options as I get supreme nutrition and exercise. I feel great except I am very low in iron however being a vego this happens. This has wrecked my great life and I wont let it ruin it and I certainly will not go down the road of the above and possibly kill myself with poisons which is all the doctors know. Ah life is unfair however no one ever says a death is from side effects of poison they just say cancer. The statistics of chemo is not much better than doing nothing for life expectancy. in fact it kills many women who have breast cancer. I wish you all luck on your journey which ever way you choose. My doctor informed me the Australian government insists on chemo before they let you have herceptin anyway even if it is not needed where is the logic in that. Yep let the poisons flow….. kill everything in your body and maybe you and then you can have a drug that may save your life although it has terrible side effects and also may kill you. Hurrah something to look forward to.

  • Susie

    I was diagnosed with stage 1 HER2 breast cancer on Nov 9th. They are going to do chemo for 6 rounds 3 weeks apart along with Perjeta and Herceptin for 1 year. My tumor is 2 centimeters. They'll be putting in a port and doing a lymph nodes biopsy. I think they want to do the drugs first in case it is somewhere else. Probably surgery sometime after. They will be checking it along the way. Just want to get started as I know this can be more aggressive. I am 63 and physically fit and walk every day with my 2 dogs. I am very scared as I've never had any health problems. I hope they're doing the right thing in doing the drugs 1st. The doctor told me this is what he would do if it was his wife.

  • IE

    My mum was diagnosed with stage 4 Her2 positive BC last month and has just undergone her 3rd chemo session of Taxotere and Herceptin. Her cancer marker dropped from 11 to 0.7 in that period of time and her largest tumor of 3cm in her lungs has disappeared. God bless us all, I hope and pray that our journey is a positive one and we find the meaning of life through this ultimate test.

  • Megan

    I'm so glad, Mary. Good luck with your remaining treatments. You're on your way …

  • Mary

    Thank you for your story. I am 53 years old and I was diagnosed HER2 + BC in January and I am scared to read about how aggressive this cancer can be and of course, recurrences. I have had two chemo treatments with four to go. You have uplifted my spirits today!

  • Katrina L.

    I was dx'd with triple +, grade 3 CA. It will be over 2 months from diagnosis to surgery, then the fear of the harsh treatments. I read about the side effects and fear my body will be destroyed while they work to kill cancer.
    Hair loss and damage to skin, nails, heart, joints?!! I don't know how I can survive this?

  • Jacquie

    Thank you for your story. It gives me great hope. At age 52, after 8 months of being persistant that something was wrong with me (4 biopsies-B9), and switching doctors; I was diagnosed with Paget's in August, which finally lead to an MRI (and 2 more biopsies) that detected 2 masses in my right breast that tested HER2+, ER-, PR-. I have had 2 chemo treatments of Herceptin, Perjeta, Taxol, and Carboplatin (sp.?) and have 4 remaining. I am mentally not strong, but am blessed with a wonderful support system and hope to become more positive. I was a runner and my working out has basically come to a stand still due to fatigue, working full time, and mental stress. The plan is for surgery after chemo, followed by radiation, and then followed by a year of Herceptin. May God Bless and be with us all.

  • Talitha Gwaltney

    Thank you for sharing your encouraging story! I was diagnosed last April with Her 2 + breast cancer. I had a lumpectomy with 3 lymph nodes removed.
    A small amount of cells were in 1 lymph node, but the other two were clear. My treatment was the same as yours, and I will finish taking the Herceptin treatment in July. I feel nervous about possible recurrence, and your post has uplifted my spirit. I pray daily that I never have to deal with this again. Hopefully, breast cancer will be a thing of the past very soon.
    -Talitha

  • Tammy C

    Thank you Megan for your wonderfully encouraging words. When I got my diagnosis of stage II ER+PR+HER2+ in my left breast in March, God had prepared my heart. I knew the biopsy would be positive. I was ready to fight, I knew my enemy, I trusted my doctor and away we went. Adriamycin/Cytoxan with neulasta shot and b12, Every two weeks for 4 cycles then Taxol every two weeks for four cycles. Along with Herceptin every week. Then they did a mastectomy I also had a 1cm area of DCIS in same breast. Not a candidate for lumpectomy. So I had bilateral mastectomies in July. I am now in the process of immediate reconstruction with expanders. Sentinel Node negative! Weekly herceptin. I have never had a full body scan but now as a baseline they want me to have a CT and Bone scan. NOW all of a sudden I am fearful, I was not fearful before. All of the what if's are coming up now. Every blood test, and scan has me a nervous wreck. I am so afraid maybe it is somewhere else and they just didnt check before. My surgical oncologist told me I have about a 1% chance of getting cancer in the breast again.
    Why am i fearful now? I should be rejoicing, done with the hard chem, done with the hard surgery. Only Herceptin left.

  • Laura

    I was diagnosed with breast cancer 10 years ago. I was stage 2b and was her2 positive. I had a lumpectomy and 11 lymph nodes removed. The cancer had spread to the first 3 nodes. I did several months of chemo and 6 weeks of radiation. I was supposed to take herceptin for a year but only took it for 6 months because it caused heart damage that has repaired itself. I was 33 years old at the time of diagnosis and I am now 43. I am scared every day of having a relapse. I was told my chances of relapse are high due to the fact that I didn't finish the 1 year recommended herceptin. Last year my other breast started leaking fluid and after a mammogram, sonogram and mri, I was told they could find nothing. Since all of those test came back clear my doctor just quit trying to find out why. Therefore, my fear of a relapse is worse than ever.

  • Cathy

    I have a pathology report that I have read, estrogen and progesterone negative. HER2 positive. I am being see at the Mayo Clinic this Monday, wish me luck…I'm scared.

  • Chrissy

    Thank you for sharing your story! I am 39 years old
    Old and was just diagnosed with invasive DCIS
    And positive for Her2, I had a lumpectomy and sentinal
    Node biopsy, which came back neg, in the beginning
    I was told just radiation and I would be good, but
    Now being told Chemo! Questioning if just haveing a massectomy
    In the beginning would have been beneficial to me!
    It so scary and very confusing! I have 3 children
    And all I think about is them! I'm glad I read your
    Story! It gives me hope!!

  • Steve S.

    I was diagnosed with late stage 3 GE (gastroesophageal) junction cancer that tested positive for HER2. I underwent aggressive chemo, including Herceptin then radiation and more chemo, then surgery (esophagectomy and partial gastrectomy). After surgery my pathological results showed total response and no cancer was found. I was unbelievably lucky. I am currently undergoing a regimen of Herceptin for one year to prevent the possible recurrence of cancer. Throughout all that treatment I have had very few side effects, although my runny nose persists, and I am keeping Kleenex in business. The reason I am writing is to say that this is a minor problem. Figuring out ways to gracefully deal with all the little humiliations that cancer treatment introduces to our lives is the least price we pay. Bring it on!

  • Sherry

    Megan thank you for sharing your story and providing a hot line for those with questions. I was diagnosed at 43 triple positive with 11 lymph nodes affected and thought it was the end of the world. I was in a clinical trial which consisted of carbo/ Abraxane and Herceptin. Then my mastectomy then more Adrimycin and Cytoxin DD than radiation. So I call it the kitchen sink. They say I had a CPR. Didn't think I would get through but I did. I wish I knew if this line when I was first diagnosed. It would of helped a lot.

  • Jen

    I am 56, Stage 2 Her2 breast cancer. I have had three chemo treatments. I am so sick this week and nothing is going well. Side effects are too great to bare and I am done. I have decided that quality of life is more important than being poisoned and possibly dealing with other health issues. Chemo is just too much for me. I never even used aspirin prior to these chemicals. My body is not doing well, I have joint pain, gray skin, numbness everywhere, stomach issues that do not quit, Having trouble leaving home and working. Life is just not worth a complete isolation. I wish you all well. I choose life my way.

  • Patricia Madelyn

    Anyone on Herceptin should protect your heart by taking these 3 supplements: Ubiquinol- (COQ10), Hawthorn Phytosome, and L-Carnitine. I have been on Herceptin for 10 months and my ejection fraction was 71% prior to Herceptin and my mugascan every 3 months has stayed @ 71% (last one was 70%). I "Vidyo " chat with a naturopathic oncologist who put me on these supplements to protect my heart- most medical oncologists wait for your heart to show damage, then they take you off the Herceptin. I had a mastectomy for stage 1 breast cancer with a negative sentinel node, a 3 cm clean margin, but with "prominent lympho-vascular invasion." I refused the chemo and have only had Herceptin- my choice. I will only have 14 of 17 treatments- again, my choice (with much input from several docs). I have found "Eleuthero- Siberian-ginseng solid extract" helps tremendously with the fatigue. But mostly, God is with me and has brought me through a very difficult year! Praise Jesus! -Isaiah 43:1-5 God bless each of you!

  • Linda

    7 years ago…HER2 positive, stage 1, no nodes affected, (lumpectomy) no lump just small specks, none in surrounding tissue. Cobolplatin and Taxatere-4 months, herceptin-1 yr, radiation-1 month-every day. BEWARE of Herceptin! It didn't give me heart problems but 2 yrs after treatment I got an auto immune disease. I was given way too much meds for such a small spot, stage 1. I can't prove it but I researched it and alot of Herceptin patients ended up with one. I heard they don't give that much to stage one her2 anymore. I feel like I was a Ginney pig! Now I have to take IVIG infusions every 5 weeks for…ever?? So my immune system won't attack my skin and muscles!

  • Susan

    Thank you so much for your story. It really does give me hope. I was diagnosed in January with Her 2 +, plus Er +, & PR +, DCIS. I had a lumpectomy, and three nodes removed which came back clear. I then had four treatments of Adriamycin chemotherapy, and next week will be my twelfth and last treatment of Taxol. I've also started Herceptin, and will start Tamoxifen and radiation after I finish Taxol. I'll still in disbelief over this whole diagnosis. I'm only 42 years old, and I have no family history of this. With the Herceptin I think I have a good prognosis. Thank you for sharing your story. BTW, I have a daughter named Megan, and she spells it the same way you do.

  • Maggie

    In 2012 at 56 years old I was diagnosed with metastatic breast Cancer stage one estrogen postive. Never smoked breast fed all 5 of my children. Was Her positive breast cancer. I elected to have a bilateral mastectomy. My nodes were negative. My chemo was delayed do to the tissue expanders leaked and needed another surgery to replacement them. I wished I just had my breast removal then chemo and then reconstruction. Had chemo carboplatin and taxotere for 6 sessions and Herceptin for one year. I was told I was over treated for my cancer and I did not really need to worry. I took tamoxifen faithfully. In July 2015 I started having chest wall discomfort after lifting something heavy. Eventually I had MRI of chest and back in October and found out I had metastases to the sternum and spine. I started weekly chemo abraxane, Perjeta and herceptin. It was so tough to hear this news. I am presently in a vaccine trial for HER positive breast cancer at NIH. I have decided to try this hoping for a better outcome. I feel like I have been a case where every thing that could go wrong went wrong.

  • jeannie

    you are a very bright light at the end of a very long tunnel for me, I start chemo on 4th dec 1 session every 3 wks then radiation then ovaries removed. I am 58 and have a history of cancer in my family but I still can't believe this is all happening. I am so glad I found you , you have lifted me.

    Thank you
    Jeannie

  • sam

    Hi everyone, I am 53 a vegetarian and a health fanatic. I have just been diagnosed with Her2 breast cancer and shocked and I am not coping well with this at all. I don't even take panadol I have never smoked drank a glass of alcohol in my life and breast fed all my babies so I feel very angry that all these obese unhealthy people in life get away without getting cancer and I got it…. which I imagine lots of you feel too.. I do not believe in killing all the healthy cells and the immune system in your body when you need it most however I did have a Lumpectomy to get the cancer out but refused the sentinel biopsy. I am looking into all options as I get supreme nutrition and exercise. I feel great except I am very low in iron however being a vego this happens. This has wrecked my great life and I wont let it ruin it and I certainly will not go down the road of the above and possibly kill myself with poisons which is all the doctors know. Ah life is unfair however no one ever says a death is from side effects of poison they just say cancer. The statistics of chemo is not much better than doing nothing for life expectancy. in fact it kills many women who have breast cancer. I wish you all luck on your journey which ever way you choose. My doctor informed me the Australian government insists on chemo before they let you have herceptin anyway even if it is not needed where is the logic in that. Yep let the poisons flow….. kill everything in your body and maybe you and then you can have a drug that may save your life although it has terrible side effects and also may kill you. Hurrah something to look forward to.

  • Susie

    I was diagnosed with stage 1 HER2 breast cancer on Nov 9th. They are going to do chemo for 6 rounds 3 weeks apart along with Perjeta and Herceptin for 1 year. My tumor is 2 centimeters. They'll be putting in a port and doing a lymph nodes biopsy. I think they want to do the drugs first in case it is somewhere else. Probably surgery sometime after. They will be checking it along the way. Just want to get started as I know this can be more aggressive. I am 63 and physically fit and walk every day with my 2 dogs. I am very scared as I've never had any health problems. I hope they're doing the right thing in doing the drugs 1st. The doctor told me this is what he would do if it was his wife.

  • IE

    My mum was diagnosed with stage 4 Her2 positive BC last month and has just undergone her 3rd chemo session of Taxotere and Herceptin. Her cancer marker dropped from 11 to 0.7 in that period of time and her largest tumor of 3cm in her lungs has disappeared. God bless us all, I hope and pray that our journey is a positive one and we find the meaning of life through this ultimate test.

  • Megan

    I'm so glad, Mary. Good luck with your remaining treatments. You're on your way …

  • Mary

    Thank you for your story. I am 53 years old and I was diagnosed HER2 + BC in January and I am scared to read about how aggressive this cancer can be and of course, recurrences. I have had two chemo treatments with four to go. You have uplifted my spirits today!

  • Katrina L.

    I was dx'd with triple +, grade 3 CA. It will be over 2 months from diagnosis to surgery, then the fear of the harsh treatments. I read about the side effects and fear my body will be destroyed while they work to kill cancer.
    Hair loss and damage to skin, nails, heart, joints?!! I don't know how I can survive this?

  • Jacquie

    Thank you for your story. It gives me great hope. At age 52, after 8 months of being persistant that something was wrong with me (4 biopsies-B9), and switching doctors; I was diagnosed with Paget's in August, which finally lead to an MRI (and 2 more biopsies) that detected 2 masses in my right breast that tested HER2+, ER-, PR-. I have had 2 chemo treatments of Herceptin, Perjeta, Taxol, and Carboplatin (sp.?) and have 4 remaining. I am mentally not strong, but am blessed with a wonderful support system and hope to become more positive. I was a runner and my working out has basically come to a stand still due to fatigue, working full time, and mental stress. The plan is for surgery after chemo, followed by radiation, and then followed by a year of Herceptin. May God Bless and be with us all.

  • Talitha Gwaltney

    Thank you for sharing your encouraging story! I was diagnosed last April with Her 2 + breast cancer. I had a lumpectomy with 3 lymph nodes removed.
    A small amount of cells were in 1 lymph node, but the other two were clear. My treatment was the same as yours, and I will finish taking the Herceptin treatment in July. I feel nervous about possible recurrence, and your post has uplifted my spirit. I pray daily that I never have to deal with this again. Hopefully, breast cancer will be a thing of the past very soon.
    -Talitha

  • Tammy C

    Thank you Megan for your wonderfully encouraging words. When I got my diagnosis of stage II ER+PR+HER2+ in my left breast in March, God had prepared my heart. I knew the biopsy would be positive. I was ready to fight, I knew my enemy, I trusted my doctor and away we went. Adriamycin/Cytoxan with neulasta shot and b12, Every two weeks for 4 cycles then Taxol every two weeks for four cycles. Along with Herceptin every week. Then they did a mastectomy I also had a 1cm area of DCIS in same breast. Not a candidate for lumpectomy. So I had bilateral mastectomies in July. I am now in the process of immediate reconstruction with expanders. Sentinel Node negative! Weekly herceptin. I have never had a full body scan but now as a baseline they want me to have a CT and Bone scan. NOW all of a sudden I am fearful, I was not fearful before. All of the what if's are coming up now. Every blood test, and scan has me a nervous wreck. I am so afraid maybe it is somewhere else and they just didnt check before. My surgical oncologist told me I have about a 1% chance of getting cancer in the breast again.
    Why am i fearful now? I should be rejoicing, done with the hard chem, done with the hard surgery. Only Herceptin left.

  • Laura

    I was diagnosed with breast cancer 10 years ago. I was stage 2b and was her2 positive. I had a lumpectomy and 11 lymph nodes removed. The cancer had spread to the first 3 nodes. I did several months of chemo and 6 weeks of radiation. I was supposed to take herceptin for a year but only took it for 6 months because it caused heart damage that has repaired itself. I was 33 years old at the time of diagnosis and I am now 43. I am scared every day of having a relapse. I was told my chances of relapse are high due to the fact that I didn't finish the 1 year recommended herceptin. Last year my other breast started leaking fluid and after a mammogram, sonogram and mri, I was told they could find nothing. Since all of those test came back clear my doctor just quit trying to find out why. Therefore, my fear of a relapse is worse than ever.

  • Cathy

    I have a pathology report that I have read, estrogen and progesterone negative. HER2 positive. I am being see at the Mayo Clinic this Monday, wish me luck…I'm scared.

  • Chrissy

    Thank you for sharing your story! I am 39 years old
    Old and was just diagnosed with invasive DCIS
    And positive for Her2, I had a lumpectomy and sentinal
    Node biopsy, which came back neg, in the beginning
    I was told just radiation and I would be good, but
    Now being told Chemo! Questioning if just haveing a massectomy
    In the beginning would have been beneficial to me!
    It so scary and very confusing! I have 3 children
    And all I think about is them! I'm glad I read your
    Story! It gives me hope!!

  • Steve S.

    I was diagnosed with late stage 3 GE (gastroesophageal) junction cancer that tested positive for HER2. I underwent aggressive chemo, including Herceptin then radiation and more chemo, then surgery (esophagectomy and partial gastrectomy). After surgery my pathological results showed total response and no cancer was found. I was unbelievably lucky. I am currently undergoing a regimen of Herceptin for one year to prevent the possible recurrence of cancer. Throughout all that treatment I have had very few side effects, although my runny nose persists, and I am keeping Kleenex in business. The reason I am writing is to say that this is a minor problem. Figuring out ways to gracefully deal with all the little humiliations that cancer treatment introduces to our lives is the least price we pay. Bring it on!

  • Sherry

    Megan thank you for sharing your story and providing a hot line for those with questions. I was diagnosed at 43 triple positive with 11 lymph nodes affected and thought it was the end of the world. I was in a clinical trial which consisted of carbo/ Abraxane and Herceptin. Then my mastectomy then more Adrimycin and Cytoxin DD than radiation. So I call it the kitchen sink. They say I had a CPR. Didn't think I would get through but I did. I wish I knew if this line when I was first diagnosed. It would of helped a lot.

  • Jen

    I am 56, Stage 2 Her2 breast cancer. I have had three chemo treatments. I am so sick this week and nothing is going well. Side effects are too great to bare and I am done. I have decided that quality of life is more important than being poisoned and possibly dealing with other health issues. Chemo is just too much for me. I never even used aspirin prior to these chemicals. My body is not doing well, I have joint pain, gray skin, numbness everywhere, stomach issues that do not quit, Having trouble leaving home and working. Life is just not worth a complete isolation. I wish you all well. I choose life my way.

  • Patricia Madelyn

    Anyone on Herceptin should protect your heart by taking these 3 supplements: Ubiquinol- (COQ10), Hawthorn Phytosome, and L-Carnitine. I have been on Herceptin for 10 months and my ejection fraction was 71% prior to Herceptin and my mugascan every 3 months has stayed @ 71% (last one was 70%). I "Vidyo " chat with a naturopathic oncologist who put me on these supplements to protect my heart- most medical oncologists wait for your heart to show damage, then they take you off the Herceptin. I had a mastectomy for stage 1 breast cancer with a negative sentinel node, a 3 cm clean margin, but with "prominent lympho-vascular invasion." I refused the chemo and have only had Herceptin- my choice. I will only have 14 of 17 treatments- again, my choice (with much input from several docs). I have found "Eleuthero- Siberian-ginseng solid extract" helps tremendously with the fatigue. But mostly, God is with me and has brought me through a very difficult year! Praise Jesus! -Isaiah 43:1-5 God bless each of you!

  • Linda

    7 years ago…HER2 positive, stage 1, no nodes affected, (lumpectomy) no lump just small specks, none in surrounding tissue. Cobolplatin and Taxatere-4 months, herceptin-1 yr, radiation-1 month-every day. BEWARE of Herceptin! It didn't give me heart problems but 2 yrs after treatment I got an auto immune disease. I was given way too much meds for such a small spot, stage 1. I can't prove it but I researched it and alot of Herceptin patients ended up with one. I heard they don't give that much to stage one her2 anymore. I feel like I was a Ginney pig! Now I have to take IVIG infusions every 5 weeks for…ever?? So my immune system won't attack my skin and muscles!

  • Susan

    Thank you so much for your story. It really does give me hope. I was diagnosed in January with Her 2 +, plus Er +, & PR +, DCIS. I had a lumpectomy, and three nodes removed which came back clear. I then had four treatments of Adriamycin chemotherapy, and next week will be my twelfth and last treatment of Taxol. I've also started Herceptin, and will start Tamoxifen and radiation after I finish Taxol. I'll still in disbelief over this whole diagnosis. I'm only 42 years old, and I have no family history of this. With the Herceptin I think I have a good prognosis. Thank you for sharing your story. BTW, I have a daughter named Megan, and she spells it the same way you do.

  • Maggie

    In 2012 at 56 years old I was diagnosed with metastatic breast Cancer stage one estrogen postive. Never smoked breast fed all 5 of my children. Was Her positive breast cancer. I elected to have a bilateral mastectomy. My nodes were negative. My chemo was delayed do to the tissue expanders leaked and needed another surgery to replacement them. I wished I just had my breast removal then chemo and then reconstruction. Had chemo carboplatin and taxotere for 6 sessions and Herceptin for one year. I was told I was over treated for my cancer and I did not really need to worry. I took tamoxifen faithfully. In July 2015 I started having chest wall discomfort after lifting something heavy. Eventually I had MRI of chest and back in October and found out I had metastases to the sternum and spine. I started weekly chemo abraxane, Perjeta and herceptin. It was so tough to hear this news. I am presently in a vaccine trial for HER positive breast cancer at NIH. I have decided to try this hoping for a better outcome. I feel like I have been a case where every thing that could go wrong went wrong.

  • jeannie

    you are a very bright light at the end of a very long tunnel for me, I start chemo on 4th dec 1 session every 3 wks then radiation then ovaries removed. I am 58 and have a history of cancer in my family but I still can't believe this is all happening. I am so glad I found you , you have lifted me.

    Thank you
    Jeannie

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