ER-, PR-, Her2+ Roll call
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@grammie2, I would love to join the group for Komen. Will you send me the info? We have a local event in October that I may go do as well.
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@djschmidt1 i bet it’s the same one! The walk event is 10/25.
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I've just been diagnosed for the 2nd time in ten years . im now diagnosed with er and pr neg ,her2 positive two areas dcis and mild foci of idc . waiting to see my surgeon for a plan. it seems that chemotherapy is a must even though I might be stage 0-1. If chemotherapy is a must is it doable?
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shorty - sorry for your new diagnosis. The same thing happened to me. Double mastectomy with no further treatment necessary. Then two years later - IDC in the residual lymph nodes on one side. Since I was diagnosed ER/PR neg and HER2 positive, my doc was very proactive. TCHP chemo, then surgery, then AC chemo since there were still some nodes that lit up, then radiation, then herceptin. It is certainly doable. I drove myself to each of the 6 hour infusion treatment and all the radiation treatments. If you're still working, I would recommend infusions on Thursday or Friday. I was always tired, but back to work by Mondays. The last treatments were now 11 years ago and I have been fine since. Bi-annual breast ultrasounds show no problems. Good luck.
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@shorty123 welcome and sorry to have to meet under these circumstances. This is a great group for support. I am 6 months out from my total treatment which included chemotherapy, lumpectomy, radiation and immunotherapy. Not super fun but totally doable. I had lots of side effects but most are gone (my feet still hurt). Please ask any questions, come here often, you will get help. A big hug to you. Donna.
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@shorty123 Hello! So sorry you are dealing with this for a second time! Sounds like they have caught this really early so that's a plus! I did TCHP for chemo, then lumpectomy, radiation and continued HER2 targeted therapy of HP/Phesgo. Not sure what treatment you had with the first, but while not fun, TCHP was doable. I worked the entire time, doing chemo on Thursday, taking Friday off. I had twice a week visits between chemo which was every three weeks. I drove myself (an hour each way) to all of my appointments except chemo day. I was given IV Benedryl on treatment days and was just way too groggy to drive home afterwards. Keep us posted on your treatment plan! We are all here for you and will be happy to share our experiences. This is a great group for sure!!
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@shorty123 sorry that u have to go through this again! I was stage 1a (high grade DCIS w single focus 1.3 mm invasive). I underwent BMX but no chemo or radiation - that was the recommendation that I got. I'm 2 years out. I've noticed some intermittent pins/needles sensation at my mastectomy site (side tumor was on).. still trying to figure out if it's just due to exercise or something else. My MO appointment is in November. I'll probably just keep an eye on it till then.
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Hello girls, how are you? Did you have a good August? Did you go on vacation anywhere? I went traveling around Scandinavia and am back to normal life.
@shorty123 I’m sorry you’re going through this again and I wish you the best of luck. Any further developments?
I’ve been feeling better, although still with the awful menopause symptoms. I had a terrible scare a few weeks ago when a large lump appeared on my arm in the operated side, near the armpit. I was seen by a doctor who wanted to do a biopsy if it didn’t improve within a week. Fortunately, it disappeared, and the conclusion was that it was from me overusing my arm (I exercise at home with weights and sometimes overdid it, until this happened).
I had more bad news. I went to a trichologist because my hair was never growing at a speed comparable to other people I know and was very thin at the top. It seems I am one of the rare cases with permanent chemotherapy-induced alopecia. The doctor said the only thing that can help me, without any miracle guarantee but just some improvement, is minoxidil—both the spray twice a day and in pills (apparently the spray alone does little). The problem is that it’s a lifelong treatment, because the hair falls out again as soon as minoxidil is stopped. The medication also causes hirsutism, and the doctor immediately said I’ll need laser hair removal on my whole body to try to control the excess hair. Additionally, since it’s a vasodilator, it can cause fluid retention and even heart problems when taken orally. I still don’t know what to do. This is devastating—I’m still young, and I loved my long, strong hair :( On one hand, I really want to have hair again because I can’t stand the wig anymore, but on the other, I’m very afraid of the side effects of minoxidil.
I haven’t decided what to do yet, and I need to make a quick decision because I’m going back to work and need to decide whether to keep wearing a wig (which is already in very bad condition and very uncomfortable), take minoxidil with its horrible side effects, or go bald on the top of my head. Maybe I'll use a scarf. I don't know what to do…
And how are you? any news?
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@catarina_fm I love following your travels on instagram ❤️. I am so sorry you are dealing with alopecia. And I understand the concerns about using medication. Does your insurance cover a real hair wig? I’ve seen some that are amazing. I wish I had the right words to share.
As for august travel, my husband and i took a road trip to the North Carolina mountains and had a wonderful time. I was able to hike and get around and it was just lovely. It was a nice break from the Florida heat. lThe scenery was beautiful! Sending you good thoughts and a hug
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@catarina_fm so good to hear from you and sounds like you've enjoyed your travels!! I am so with you on the hair thing. Mine has come back all over but pretty thin. And it is slow growing too. I keep hoping as Phesgo gets out of my system things will change (last one was mid May). My MO said I could try the topical Rogaine and I am seriously thinking about it. It works for some, but not everyone. My MO didn't encourage the pill form, but was ok with the topical. Mine is not so thin that I will wear a wig though. I did buy some powder to mask the scalp a bit. Aggravating but it does make a difference. I have a really nice wig that I bought when I was first diagnosed. I only wore that one a handful of times because it just wasn't becoming on me. Not sure your style or color, but I'd love to gift this one to you if you'd like. It's not 100% human hair but a blend I think. And it is "laced" so it is supposed to look more like real hair. I will try to find a pic if you are interested.
@shorty123 , @msn , @djschmidt1 @minustwo I hope you all are doing well!!
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Thank you so much for your kind words, you’re all such sweet people 💛 I feel like you really are the ones who understand me best, because we all went through such a similar diagnosis and treatment. I often say that even if we manage to beat the disease, we lose so much along the way 😔But of course, the most important thing is always our health.
@djschmidt1 I’ve always been fascinated by the USA. I was looking at pictures of the mountains in North Carolina and they’re absolutely stunning! You’re so lucky to have such a diverse natural landscape all within the same country.
@grammie2 thank you so much for your generosity, I really appreciate it ☺️ I think I might be able to apply here to get a free wig made of natural hair, given my situation. But I’ll reach out to you if it’s not possible, since the first wig was already expensive enough, and if you’re not going to use yours, it might work for me. Thank you!!!
I’m still not sure what I’ll do. I don’t want to take minoxidil pills, but maybe I’ll try the topical treatment, which I’d have to use forever. I looked it up and it has far fewer side effects, but it’s also not as effective. I’m sorry you’re going through the same thing. I doubt that topical minoxidil will make enough of a difference for me to give up the wig, but maybe it will work for you!
Sending a big hug to all of you! 😘
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@ catarina, I'm ok,just saw a surgeon and now waiting to see the reconstruction surgeon before surgery date .i guess no chemo before. I will know my treatment plan after testing tissue. I know the her2 positive is aggressive but I pray that by the time I am schedule for surgery it hasn't grown significantly. I will post updates as soon as I know more. Thanks to all who responded to my post ,God bless!!
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Hi all! @shorty123 I'm hoping for the best for u. It is scary but you are not alone and will get through this 🤗
@catarina_fm ugh the hair situation sounds frustrating. I think I would try the topicals first n maybe biotin vitamin supplement (supposed to help hair), Maybe scalp massage w coconut hair oil to help circulation? I wonder maybe if u do take oral minoxidil if u can try a very low dose or even take a pill every other day to limit side effects? 🤞 That your insurance covers cost of new n improved wig. I think there are breast cancer organizations that might help provide funds for wigs. Good luck chica!
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I was diagnosed with IDC breast cancer stage 1 grade 3 in 2012.
My pathology at my first hospital showed ER-PR-HER2+. I went to Boston for a second opinion and their pathologist showed I was not HER2 positive but still ER-PR-The two pathologist agreed to send it to the Mayo Clinic for a different test for HER2+ and their pathologist showed results were “ambiguous”. Didn’t show conclusively negative or positive.
because HER2+ before targeted therapy had an especially high mortality rate within five years they didn’t want to risk not giving me Herceptin along with two chemo drugs.
I have remained cancer free these past 13 years. Yay!But I did have a fairly low percentage side effect from Herceptin. After finishing the 4 months of chemo and remained on Her Elton my bone and joint pain (which was attributed to chemo) got worse and worse.
I told my oncologist at about six months on Herceptin I believed it was causing this. She had never seen that side effect and didn’t think it was related. I stayed on it the full year. My pain got worse during it and it is now a life long side effect.
To my oncologist credit at my 6 months post treatment checkup she came in with tears in her eyes and profusely apologized for not listening to me. She had another patient with this side effect and after researching it more it is a rarer side effect (it shows around 4 to 5% may get this) but of course that means some do.
I asked what she would have done differently and she said immediately stopped Herceptin when the pain persisted and got worse when only taking Herceptin.
with these drugs they base the length of treatment on the trials that were done to see the efficacy any of the drug. Typically that is a year but they don’t know if 3, 4, 6 etc months is just as effective. What they have seen is because Herceptin is linked to heart toxicity they give you echocardiograms every two months on it to monitor that. She said in cases where at 4 months mild signs of heart side effects means they stop giving Herceptin but she has seen those patients still have long term results from the treatment.
Not sure if anyone on this thread has had side effects of bone and joint pain but if you have and are still in treatment talk to your oncologist about that side effect as likely they would stop it because the longer you are on it the worse the symptoms and it becomes chronic.
I am grateful I am alive and even with this pain have learned to live and enjoy a wonderful life.
I also have a gene mutation linked to breast and other cancers which was finally tested for after I got cancer. My maternal side had my Mom and both her sisters with breast cancers, first one and then the other several years after, lung cancer and colon. They all died of cancer but thankfully survived in my Mom’s case 15 years from her first diagnosis at 50. But she died so young. I am now 66, a year older than when she died.
If any of you have family histories I highly recommend have them run the full panel of genetic mutations linked to breast cancer and others. I think it checks for well over 28 mutations. Prior to be diagnosed because of my family history was closely monitored and just six months before my diagnosis a genetic oncologist did screen for mutations but only the BRAC ones. She should have done the full panel as I made it clear if they found any o would have prophylactic mastectomies. Sadly they didn’t although likely the cancer was already there given they screened me only six months the prior.
My sister and cousin both screened positive for it and both had prophylactic mastectomies and no cancer.
Thankfully my daughter got screened after she was done breast feeding her last baby and does not have the mutation.
My sons should be screened at 40 because of the link to prostate and colon so they would be screened earlier for those should they have it. And my one son has a daughter so he would want to know for that reason too.
My brother didn’t screen himself, not sure why and he was diagnosed with prostate cancer 3 years ago and a reoccurrence last winter but they feel his outcome will be good.0 -
@julieho Hey there! I'm so glad you stopped by and put your experience out there to help others. I'm sorry you have suffered a long term SE from Herceptin. I am 3 months out from my last injection. I have mild neuropathy in my feet and lower leg which does seem to be improving. I fought and still fighting edema that started about TCHP #4. It went away during the 2 months between finishing chemo and having surgery. But once I started Phesgo the swelling started again about the 3rd injection. While it is a very effective cancer fighting drug, it can cause some chaos too. I received Phesgo (herceptin and perjeta) for a total of 17 or 18 (lost count). The ECHO's are done every three months now.
I didn't qualify for the genetic testing and I was 58 at diagnosis. No one in my family has had cancer. My dad did have some pre-cancerous cells removed in his colon, but that was it.
Thanks again for sharing and congrats on being cancer free for 13 years!!! That's wonderful and makes us all hopeful!
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@julieho, I second that. Congratulations on being cancer free for 13 years! I only made it to 10 years.
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Hello all! I have my oncology appointment in couple weeks. I have noticed some firmness and a sore feeling above nipple line area of my implant (same side as where cancer was). It feels fuller than the other side. First I thought it was muscle sprain from chest exercises but still present several days later. Other implant feel soft and just fine. Maybe it's a capsular contracture but is it odd that it is in middle of implant and not on sides? Any thoughts?
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Update- so I think I have sprained my pectoralis muscle on left side. I have submuscular implants. Has anyone had this before and if so how long did it take to heal?
My breast MRI and chest CT were normal - thank goodness! No signs of cancer or capsular contracture to explain the discomfort.
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By the way, I just read this today about vaccine! This gives me so much hope for us!
https://www.curetoday.com/view/fda-fast-tracks-vaccine-for-some-with-breast-cancer
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Hi @snm I don’t have implants but I am glad to know it appears to be muscular. No one quite understands the anxiety that comes with this road we've been on. I am due on December for my second follow up since completing treatment and the unknown is a little anxiety inducing. I read the vaccine study, very encouraging.
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@djschmidt1 I am right there with you on the 2nd follow-up. I already had the second mammo scheduled for Dec 1st. I've been going to therapy for swelling and fibrosis and three weeks ago, the therapist felt what she thinks is a node at the tumor site (on side towards armpit). I had two positive at original diagnosis and had 4 removed at surgery. Went to my surgeon, but she didn't feel anything but added ultrasound to my scheduled mammo. I'm nervous about this to say the least. I still have my port, so as prepared as I can be for the worse outcome sadly.
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@grammie2, i will keep you in prayer. D
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Hello girls, how are you? I miss you! I’m back at work and it’s been crazy. I wish I could work part-time, but my job doesn’t allow it. I confess that after everything, it’s been harder to keep up with the pace I had before the illness. But anyway, I’ve finished the Herceptin and I believe things will start to improve. I’m taking minoxidil (topical and oral) because I was left with permanent alopecia on the top of my head. For now I don’t see any changes there, but I do notice a lot of facial hair growing, it’s awful, I’ve been bleaching it so it’s not noticeable. Let’s see if the hair starts growing where it’s supposed to!
@grammie2 I wanted to share two things that happened to me:
First, a few months ago, a huge and inflamed lump appeared on my arm on the operated side, near the armpit. I panicked, went to the hospital, and the doctors that saw me that day were already considering doing a biopsy. They called my oncologist and she said they shouldn’t do any biopsy because it was probably nothing (I had had an appointment with her the week before, she examined me, and there was nothing). We waited a week and the lump ended up disappearing. They concluded it was caused by some effort I had made, and the truth is that if I put too much strain on that arm, it feels “bruised” and it hurts to the touch. But it’s nothing serious. I need to find time to see a physiotherapist to understand whether there’s some kind of mild cording causing the pain. The doctor said that since they removed nodes, the lymphatic system changed and this kind of thing often happens.The other situation, more recently, was that I felt a round, hard lump in the breast, exactly where the tumor used to be. To make it worse, it became slightly inflamed and painful, and I definitely didn’t have anything there before. Another huge scare. I went to the hospital, they called the surgeon to examine me, and she immediately said it was probably a radiation side effect, but she requested an early mammogram and ultrasound (my first mammogram and ultrasound were supposed to be only in December, but they were done in October because of this).
When I had the exams, the doctors immediately assured me everything was fine. The lump did indeed show up as a radiation effect. What they explained was that since we get a radiation boost in the area where the tumor used to be, the chances of these hard spots appearing are real and not uncommon. They told me to massage it, and I try to massage it every day, but since it hurts, I don’t insist too much. The “lump” is still there, although I think it has reduced a bit with the massages.
All this to say that I truly think it’s something like that, based on what you describe. Don’t be afraid! Everything is going to be fine :)
Hugs to all of you!
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@catarina_fm so good to hear from you! I miss all the chats with everyone! I know what you mean about not having the same "get up and go". I feel this too, but I do think it's improving. I really hope the treatment will work and you will start seeing improvement in hair growth. Mine is so very thin…scalp showing. I am trying a little bit of everything before I resort to topical minoxidil. My MO didn't seem keen on giving me the pill form. I've been applying castor oil with rosemary and peppermint and leaving it on overnight. Only difference I see is it "plumps" up the strands of hair I do have a bit. No growth and maybe some spots actually thinning a bit. Ugh.
Thanks for the info on your lumps and thankful yours were fine. I found it really odd that my surgeon couldn't feel anything out of the ordinary. But glad she is still being proactive and ordering the diagnostic mammo and ultrasound. Honestly, I find that side of my breast and armpit area lumpy anyway. And when the therapist found it, she made me feel it as well and I did feel a small hard lump. I made her feel to see if it was still there at my appt. last Thursday and she said yes. I know that there a fat necrosis and other stuff that happens after treatment and surgery, so maybe that is all this is. I don't really have any other symptoms.
Everyone take care!!!
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Hi ladies!!! I am coming with wonderful news! I had my diagnostic 3D mammo and ultrasound today to see if what my therapists felt was indeed concerning (my surgeon couldn't feel anything weird but changed my scheduled 6 month follow up mammo to diagnostic). There was nothing new and my post surgery seroma has become a tad smaller! I am so thankful and give God the glory for these results! We prayed hard!
I hope and pray all are coming through their journey as easily as possible. It is so hard once diagnosed with cancer and all of the SE's that follow us after the fact. My hair for one. I know that is small compared to having a body free of cancer, but I guess I am a little vain and wish I had a thick head of hair that would grow. I'm a year and a half from chemo and barely have 2" of growth and so thing. I know a couple of you relate and are even in more dire straits. Sorry for whining! I just feel old, fat and ugly.
Sending you all hugs and so thankful I have all of you to come and celebrate with and also whine too LOL.
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I told you, I knew everything would be fine because I went through the same thing 😊 But I understand the fear, when I felt the lump in my breast I ran to the hospital and had emergency tests done. Now I’ve realised that radiotherapy causes changes, especially in the area where the tumour was, because we get a radiotherapy boost on the spot. I’m happy for you! 🥰 As for the hair, you already know I feel the same way, and in my case I can’t take the wig off because I really have very little hair, and on top of that the minoxidil makes me grow hair all over my body and it doesn’t seem to be working on my head unfortunately. Let’s see what the doctor says in April, it might turn out that there’s nothing to be done. Anyway... The joint pain, the sudden hot flashes from the induced menopause, some slight problems with my arm that hurts for a few days when I make a bit more effort, etc. There are so many changes and I never imagined being like this at this age 🥺 It’s discouraging on one hand, but on the other we just want to be free from this damned disease forever and may it be so. Stay strong girls 🙏
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