June 2016 Diagnosis Stage 1A Her2+ Support
Hoping to compare notes with others recently diagnosed with Stage IA HER2+ breast cancer. I had the 1.2cm mass removed a few weeks ago and will have sentinel node surgery on July 5th, then begin weekly Taxol chemo July 15th. To say I am scared to death is an understatement! Anyone with experience out there that can calm my nerves and give me hope?
Comments
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Stage 1a Breast Cancer small mass
i, I have never been on here before so you are my first reply, but as I read the question of why are you not radiation only without chemo. I live in Dayton OH and went to the Kettering Hospital it sounds like you are the same as me. First let me say this, try to stay as calm as you can, over stressing is not helpful to your body for it to heal and do what it needs to do for you. Did you have a lymph node removed, I had one removed and that was my main problem as it caused a lot of arm problems. Anyway. You are early stage, small mass, and nothing in the lymph nodes, this is all good news or the best news you can get at this point. I had radiation, 21 treatments following my lumpectomy, I had nothing in my lymph node that was removed. Now I am starting on the 5 yr medication called Letrozole (which is why I came to the site, I am looking for info from others that have taken it and how the side affects were for them). Let me say that my first challenge was dealing with the emotional part of the treatment in all kinds of ways, it was very emotional, so it is ok to feel what you feel, it is how most react from what I am told and read. The other great part of this is the internet, lots of ways to stay in touch with folks, and make sure you find someone to talk to, and support you that is outside of immediate family (helps to talk) and a lot of it will be about them..funny.
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Additional comment
I realized today you were going back for the sentinel node surgery on July 5th. Hope you are feeling okay and the results came out okay. Let me know if you want to chat. I was just concerned about the chemo versus the radiation, just wanted you to know I only had radiation not chemo.
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No Herceptin?
Just wondering if you're HER-2+ why you did not mention Herceptin . .
Suzanne
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HER-2+Double Whammy said:No Herceptin?
Just wondering if you're HER-2+ why you did not mention Herceptin . .
Suzanne
It's been a few weeks since I have signed on. Thanks much for your reply. Yes, I am Her-2+ so will be getting Herceptin as well. I've decided to get a second opinion on Monday so I am seeing another oncologist to determine if the chemo is really necessary. This process is sooo confusing and I'm certain it is because cancer is so different for many of us.
Any advice?
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Thanks!gfbago said:Additional comment
I realized today you were going back for the sentinel node surgery on July 5th. Hope you are feeling okay and the results came out okay. Let me know if you want to chat. I was just concerned about the chemo versus the radiation, just wanted you to know I only had radiation not chemo.
Thanks so much for your post! You are correct....it is great to be able to chat with others who have gone through or are going through similar situations. I am HER-2+ which is the reason I think the oncologist recommended chemo. The surgeon removed 8 nodes and all were negative for cancer cells. Thank God! You are correct....we hang onto every bit of good news we receive! I was so relieved to get that news! Recovering well....even traveled last week on a plane to work and felt great.
I have decided to get a second opinion from another oncologist closer to home. I'm mentally ready to begin whatever therapy I need but will feel better hearing from another oncologist before I begin treatment.
Wishing you the best too. Were you HER-2+?
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Our stories sound similar,gfbago said:Stage 1a Breast Cancer small mass
i, I have never been on here before so you are my first reply, but as I read the question of why are you not radiation only without chemo. I live in Dayton OH and went to the Kettering Hospital it sounds like you are the same as me. First let me say this, try to stay as calm as you can, over stressing is not helpful to your body for it to heal and do what it needs to do for you. Did you have a lymph node removed, I had one removed and that was my main problem as it caused a lot of arm problems. Anyway. You are early stage, small mass, and nothing in the lymph nodes, this is all good news or the best news you can get at this point. I had radiation, 21 treatments following my lumpectomy, I had nothing in my lymph node that was removed. Now I am starting on the 5 yr medication called Letrozole (which is why I came to the site, I am looking for info from others that have taken it and how the side affects were for them). Let me say that my first challenge was dealing with the emotional part of the treatment in all kinds of ways, it was very emotional, so it is ok to feel what you feel, it is how most react from what I am told and read. The other great part of this is the internet, lots of ways to stay in touch with folks, and make sure you find someone to talk to, and support you that is outside of immediate family (helps to talk) and a lot of it will be about them..funny.
Our stories sound similar, but of course, no cancer is the same. I too had a tiny DCIS, stage 1, ER/PR+, and no lymph node involvement. Did the lumpectomy, with 32 radiation treatments, and just started last week on Femara/Laterozole (sp?). So far, so good and no side effects that I can see yet, but I just turned 70 so all those bone issue things/joint pain etc are already in place. Dr. did put me on 1200mg of Vitamin D and 2000mg of calcium but my bone density showed excellent strong bones to start. Will be having a PAP soon, since I haven't had one in a long time, and am concerned that Ovarian Cancer might show up, as I do have a family history for that. I guess my reply is to just take everything one day at a time; get all the information you can; join a support group; and trust your intuition. Best of luck to all of you+
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I was also diagnosed with
I was also diagnosed with stage 1a dcis but also multi focal. I am ER/PR+ and HER2+ . My surgeon recommended a mastectomy. For several reasons, I had bilateral mastectomy. One was peace of mind and another was symetry after reconstruction. Due to my good health and small breast size and tumor towards outer edge, I was a candidate for skin and nipple sparing mastectomy.
My surgery was on 4/28/16 with immediate reconstruction (expanders to be replaced by implants). I had 2 fills and then waited about 4-5 weeks to have final outpatient procedure to put in implants on 6/20. I'm very happy with end result. Since I had mastectomy, I will not have radiation.
On 7/6, I started my 15 month path of treatment. Oncologist recommends ACTH. I can't think of this taking more than a year so I think of it as 3 phases. I will have 4 treatments of AC over 12 weeks. I had 2nd treatment yesterday. Phase 2 will be 12 weekly treatments of Taxol and Herceptin. With no interruptions, these 2 phases should end by mid December. The final phase will be Herceptin every 3 weeks for the remaining 40 weeks. I should finish all treatments in September 2017.
Im told the Herceptin is preventative to keep cancer from returning or showing up in other areas. My hair startEd shedding exactly on day 15 after first chemo. its extremely thin one week later but head is still covered. I've had few other side effects. They give me anti nausea med in IV before the chemo which do make me sleepy so I plan a nap shortly after I get home. The IV anti nausea meds help for about 3 days. I took one other nausea med after first treatment but didn't need another dose. So far appetite is the same and I walk 10,000 steps daily which includes a 2 mile loop most mornings.
My husband was battling head and neck cancer when I received my diagnosis. It was so frightening to help him through his chemo and radiation once I learned I would also be needing surgery and chemo myself. He is well on his way to recovery and decided to retire. Now he is around every day to help me. I am able to work from home and am taking advantage of that to limit exposure to germs and be able to rest or eat or whatever care I need.
my advice to you is to ask lots of questions, have confidence in your treatment team and make sure you understand their answers. They will help you. My oncologist noticed that I took a lot of notes. He said they best way you can help us help you is to make note of how you feel every day or notice when you feel something change. Let us know because we may have a tool in our toolbox to manage that symptom.
Best of luck to you. We can get through this! Hugs!
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Thanks!Homer's Mom said:Our stories sound similar,
Our stories sound similar, but of course, no cancer is the same. I too had a tiny DCIS, stage 1, ER/PR+, and no lymph node involvement. Did the lumpectomy, with 32 radiation treatments, and just started last week on Femara/Laterozole (sp?). So far, so good and no side effects that I can see yet, but I just turned 70 so all those bone issue things/joint pain etc are already in place. Dr. did put me on 1200mg of Vitamin D and 2000mg of calcium but my bone density showed excellent strong bones to start. Will be having a PAP soon, since I haven't had one in a long time, and am concerned that Ovarian Cancer might show up, as I do have a family history for that. I guess my reply is to just take everything one day at a time; get all the information you can; join a support group; and trust your intuition. Best of luck to all of you+
Thank you! Hope you continue to do well with your treatment!
Kathy0 -
Thanks!button2 said:I had Stage IIC triple positive four years ago
Just to let you know I'm a HER2 survivor and doing just great! Do the full treatments (incl Herceptin) and you'll do just fine. Keep coming to this site, the ladies are absolutely terrific! Hugs, Anna
Thank you! I agree....everyone here is sooo encouraging and positive. Need those vibes!
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Thanks!Kfish said:I was also diagnosed with
I was also diagnosed with stage 1a dcis but also multi focal. I am ER/PR+ and HER2+ . My surgeon recommended a mastectomy. For several reasons, I had bilateral mastectomy. One was peace of mind and another was symetry after reconstruction. Due to my good health and small breast size and tumor towards outer edge, I was a candidate for skin and nipple sparing mastectomy.
My surgery was on 4/28/16 with immediate reconstruction (expanders to be replaced by implants). I had 2 fills and then waited about 4-5 weeks to have final outpatient procedure to put in implants on 6/20. I'm very happy with end result. Since I had mastectomy, I will not have radiation.
On 7/6, I started my 15 month path of treatment. Oncologist recommends ACTH. I can't think of this taking more than a year so I think of it as 3 phases. I will have 4 treatments of AC over 12 weeks. I had 2nd treatment yesterday. Phase 2 will be 12 weekly treatments of Taxol and Herceptin. With no interruptions, these 2 phases should end by mid December. The final phase will be Herceptin every 3 weeks for the remaining 40 weeks. I should finish all treatments in September 2017.
Im told the Herceptin is preventative to keep cancer from returning or showing up in other areas. My hair startEd shedding exactly on day 15 after first chemo. its extremely thin one week later but head is still covered. I've had few other side effects. They give me anti nausea med in IV before the chemo which do make me sleepy so I plan a nap shortly after I get home. The IV anti nausea meds help for about 3 days. I took one other nausea med after first treatment but didn't need another dose. So far appetite is the same and I walk 10,000 steps daily which includes a 2 mile loop most mornings.
My husband was battling head and neck cancer when I received my diagnosis. It was so frightening to help him through his chemo and radiation once I learned I would also be needing surgery and chemo myself. He is well on his way to recovery and decided to retire. Now he is around every day to help me. I am able to work from home and am taking advantage of that to limit exposure to germs and be able to rest or eat or whatever care I need.
my advice to you is to ask lots of questions, have confidence in your treatment team and make sure you understand their answers. They will help you. My oncologist noticed that I took a lot of notes. He said they best way you can help us help you is to make note of how you feel every day or notice when you feel something change. Let us know because we may have a tool in our toolbox to manage that symptom.
Best of luck to you. We can get through this! Hugs!
I am ready! Just this week, I went to a second oncologist to get a second opinion. He was absolutely fabulous and the great news is, his office is much closer to my home than the 90 minute one way drive I initially had planned to do. After my meeting with him on Monday, he scheduled for me to get an echocardiogram, the port inserted by a surgeon (which hurt worse than the lumpectomy and the lymph node dissection!), and my treatment plan education by his RN. I know that was God's way of telling me this was the right place to get my treatment! The only surprise this week was from the treatment plan nurse....I didn't realize I would have to have the herceptin one day and then go back the next day for the Taxol on my first dosage.....seems like it will be a little easier on my body.
So, I will begin my treatment on August 18 with herceptin, then the first round of Taxol on August 19....after 12 weeks of herceptin and Taxol, I will begin radiation followed by a year of herceptin every 3 weeks.
Thanksgiving will have a totally different meaning for me and my family this year. My twins turn 21 the week after my final Taxol treatment. Everything is falling into place.......I'm ready.
Thank you for your positive thoughts. You are right...we will prevail! Then, we must think about how we will advocate for others.
Hugs to you too!
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Stage I HR Pos +3
I was the 20th family member diagnoised with various cancers. Only half made it. Because of my family history, I chose bilateral masectomy with no reconstruciton. No spread in the sentinal nodes and they removed 11 total to be sure. I just completed my high dose chemo. I could not go on to Taxol because my neuropathy was so bad and Taxol can really stir that up. I will begin a year of Herceptin in a week.
I wish you luck and peace and God's strenghth through your journey, it will be a tough one so remember to fight like a girl!
Tip: Lifesaver's candies help during infusion times. Plastic utensils help at meal time. Keeps the metal taste at bay.
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2nd opinion was great idea
im so glad you got a 2nd opinion and are more confident in the different facility and treatment. That will be very important to you emotionally during this journey. i too got 2 opinions. One recommended just TH and the other recommended ACTH. I asked why the chemo regimine with more drugs and toxicity was recommended and was it really necessary. He answered : ACTH is the recommendation by NCCN which I confirmed. Then he asked me: why would I want to do anything less than the national recommendation. I had no answer. If I'm going to do any chemo, I need to have faith in my doctors that the want to improve my chances of a long life free of reoccurrence.
I had #3 of 4 AC treatments today. I will start Taxol and Herceptin on Sep 7. My oncologist recommend taxol be given weekly and not dose dense taxol every 2 weeks. He says his patients have tolerated weekly treatments better. Also he said I would not get neulasta after the taxol treatments.
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2nd opinion continued
It is my understanding that Herceptin is given for a full year. I believe the Herceptin you will receive in August will count towards the total year. So when you are done with radiation, you might only have 9 months of Herceptin but I suggest you clarify with your oncologist.
I've been drinking ice water during AC chemo and have no changes to taste or mouth sores. I plan to do the same during taxol and hope I have the same success. Will your taxol be given weekly or every 2 weeks? I'd love to hear about your experience as you will be starting taxol a few weeks before I will.
Karen
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Hi Karen,Kfish said:2nd opinion continued
It is my understanding that Herceptin is given for a full year. I believe the Herceptin you will receive in August will count towards the total year. So when you are done with radiation, you might only have 9 months of Herceptin but I suggest you clarify with your oncologist.
I've been drinking ice water during AC chemo and have no changes to taste or mouth sores. I plan to do the same during taxol and hope I have the same success. Will your taxol be given weekly or every 2 weeks? I'd love to hear about your experience as you will be starting taxol a few weeks before I will.
Karen
Hi Karen,
I am starting my treatment plan this week. I will have Herceptin on Thursday and Taxol on Friday for this first round. Then, I will begin weekly Herceptin and Taxol treatments every Friday for 11 more weeks. Then, I will take Herceptin via infusion every 3 weeks until this time next year. Hopefully, I will finish Taxol by the beginning of November and then will begin the radiation. I am ready to get through this process. I travel with my work (via plane most of the time) and am hopeful I can still work. My oncologist is optimistic and believes I will be able to do so. I'm trying to remain positive and know that God will take good care of all of us ladies through this process.
How are you doing?
Kathy
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Karen,Kfish said:2nd opinion continued
It is my understanding that Herceptin is given for a full year. I believe the Herceptin you will receive in August will count towards the total year. So when you are done with radiation, you might only have 9 months of Herceptin but I suggest you clarify with your oncologist.
I've been drinking ice water during AC chemo and have no changes to taste or mouth sores. I plan to do the same during taxol and hope I have the same success. Will your taxol be given weekly or every 2 weeks? I'd love to hear about your experience as you will be starting taxol a few weeks before I will.
Karen
Karen,
I forgot to mention in the first response that my oncologist has perscribed Dexamethasone (a steriod) that I have to take prior to my first taxol treatment....I will take 5 pills the evening before the treatment and 5 pills the morning of the treatment. She also perscribed a nausea medication and lidocaine that I will put on the area of skin above my port the morning of the treatments to numb the area. It sure is a lot to remember and writing down the info in a journal is helpful. I have a long list of over the counter "stuff" I need to get this week as well just in case I have other symptoms.
Look forward to hearing how you are doing.
Kathy
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I had #3 of 4 AC treatments
I had #3 of 4 AC treatments last Wednesday. My last AC treatment is on 8/24. I will begin 12 weekly Taxol and Herceptin treatments on 9/7. I've had minimal side effects from AC. Nausea was managed by meds prior to chemo infusion. I did lose my hair but no other side effects From either AC or Neulasta.
i haven't discussed any specifics about the taxol & Hercept infusions with oncologist yet but will be sure to ask about the steroid and I'm curious why taxol and Herceptin are given on separate days for your first treatment. My oncologist recommended weekly infusions rather than dose dense every other week. He has said other patients seem to tolerate the weekly treatments much better.
i wish you minimal side effects as you begin the taxol journey. You will be 2 treatments ahead of my schedule. please let me know how you are doing. Stay strong!
I can offer tips that I feel have helped minimize my side effects with the AC chemo but I have no idea if the same practices will help with Taxol. I increase my water intake to at least 80 ozs the day before, day of and for 2-3 days after chemo. I take a thermos of ice water to chemo and chew on ice during the one infusion. I don't know if that's prevented mouth sores but it sure can't hurt anything. I also have continued to exercise regularly ( it's good for me physically and mentally). I've not had any mouth sores or taste changes and therefore have been able to stick to a pretty normal healthy diet with plenty of veggies and fruit. I do find that I need an extra nap on 2nd day after chemo but am back to normal by day 3.
im hoping these same practices help me sail through the taxol treatments.
Best of luck to you!
Karen
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Herceptin
Hi:
My mom was diagnosed with Stage 4 HER 2+ breast cancer. She had it in her right breast, one lymph node and a nodule in each lung. Since she was 82 at diagnoses and very independent, she didn't want to do chemo and they wouldn't do surgery because it was in the lungs. She decided only to do the Herceptin. Well 18 months later, her tumor was reduced by 55%, the lung nodules were gone, and they were able to do surgery. She had the breast tumor removed and the lymph node plus an extra lymph node. The second node was negative. She just saw the doctor yesterday and was very pleased with her prognosis. He wants her to continue with the Herceptin. They may want her to do radiation but I don't think she will at this time.
She had no reaction to the Herceptin and she usually drives herself to her treatments. I thought I would let you know about the Herceptin.
My best to you,
Kathy
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Thanks much and so happy forKaleena said:Herceptin
Hi:
My mom was diagnosed with Stage 4 HER 2+ breast cancer. She had it in her right breast, one lymph node and a nodule in each lung. Since she was 82 at diagnoses and very independent, she didn't want to do chemo and they wouldn't do surgery because it was in the lungs. She decided only to do the Herceptin. Well 18 months later, her tumor was reduced by 55%, the lung nodules were gone, and they were able to do surgery. She had the breast tumor removed and the lymph node plus an extra lymph node. The second node was negative. She just saw the doctor yesterday and was very pleased with her prognosis. He wants her to continue with the Herceptin. They may want her to do radiation but I don't think she will at this time.
She had no reaction to the Herceptin and she usually drives herself to her treatments. I thought I would let you know about the Herceptin.
My best to you,
Kathy
Thanks much and so happy for your mother. Hopefully my results will be similar....feeling good about the treatment plan.
Kathy0 -
Karen,Kfish said:I had #3 of 4 AC treatments
I had #3 of 4 AC treatments last Wednesday. My last AC treatment is on 8/24. I will begin 12 weekly Taxol and Herceptin treatments on 9/7. I've had minimal side effects from AC. Nausea was managed by meds prior to chemo infusion. I did lose my hair but no other side effects From either AC or Neulasta.
i haven't discussed any specifics about the taxol & Hercept infusions with oncologist yet but will be sure to ask about the steroid and I'm curious why taxol and Herceptin are given on separate days for your first treatment. My oncologist recommended weekly infusions rather than dose dense every other week. He has said other patients seem to tolerate the weekly treatments much better.
i wish you minimal side effects as you begin the taxol journey. You will be 2 treatments ahead of my schedule. please let me know how you are doing. Stay strong!
I can offer tips that I feel have helped minimize my side effects with the AC chemo but I have no idea if the same practices will help with Taxol. I increase my water intake to at least 80 ozs the day before, day of and for 2-3 days after chemo. I take a thermos of ice water to chemo and chew on ice during the one infusion. I don't know if that's prevented mouth sores but it sure can't hurt anything. I also have continued to exercise regularly ( it's good for me physically and mentally). I've not had any mouth sores or taste changes and therefore have been able to stick to a pretty normal healthy diet with plenty of veggies and fruit. I do find that I need an extra nap on 2nd day after chemo but am back to normal by day 3.
im hoping these same practices help me sail through the taxol treatments.
Best of luck to you!
Karen
Karen,
I think the steriods are to prepare my body for the intensity of the taxol drug. It is 12:25 and I can't sleep the night before my first herceptin treatment and I'm not sure why....don't feel a bit anxious. May be because I just got off a plane (I travel via plane weekly for work that I absolutely LOVE!). Definitely talk to your oncologist....the first oncologist I went to didn't say anything about giving me herceptin one day and taxol the next, nor did she suggest the steriods the night before and the morning of taxol. That was a Duke Cancer Center. My second opinion oncologist is the one who I decided to get treatments from. I will take 5 of the pills tomorrow at 10pm and 5 at 6am on Friday morning prior to the Taxol. The paperwork that the oncologist gave me indicates, "IF YOU DON'T TAKE THE STERIODS, YOU WILL NOT BE GIVEN TAXOL." That's pretty strong to be written in all caps.
Good idea about the ice....I will be sure to take some with me. Hopefully I can get a lot of water in me tomorrow as well before the taxol....I hate water! Ha!
Will let you know how I am doing this weekend. Day 1 of 12 treatments will be history by then and I am optimistic that I will be feeling just fine!
Kathy0
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