Looking for Her2 Positive survivor stories
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I had no trouble with chemo and radiation, I worked all through both of these only taking off on chemo treatment day and a few days when I was just too tired to go. I thought that I would do fine on Nerlynx, but it wiped me out. I had severe diarrhea & vomiting until I ended up in the ER for dehydration. They gave me bunches of anti-diarrhea and anti-nausea pills, but didn't help. I think it was just me, other people seem to do ok on it. I had to stop.
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Fitz33-congratulations on 9 yearss. I just started only herceptin infusion period plus letrozle. My chemo ended3 month ago but still have short duration on and of bone or joint pain in my foot and some muscle pain. I do not know anymore if it is lingering chemo se or herceptin or Letrozole? What type of se do you have with only hormon pills? You seem have some problems from rads such as lymphadema but I thought the latter happens due to surgery? How many years do you have lymphadema and what are you doing to control it? Thanks for re
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Margun, I had some residual joint pain after chemo and rads but they eventually stopped. When I went on Arimidex I joined a trial to see why some women could stay on it while others couldn’t handle it. I was told by the lead doctor to overlook side effects for 3 months each time new ones would come up because after that they would subside. Sometimes it was only a couple of months and eventually most side effects went away. The doctor said some women can handle it and they hoped to determine why through blood tests. Unfortunately, not all the money came through so the trial was discontinued. By then taking my nightly Anastrazole (Arimidex generic) didn’t bother me and now it’s 9 years or so.
Lymphadema comes from either rads or surgery, I’ve been told by one doctor mine was rads and another surgery so who knows? I think the lymphadema started a few or more months after treatment and I’ve had it ever since. I do a daily lymph massage on my arm and see a therapist from time to time when it gets worse, usually in the heat of summer. I then have a pneumatic pump sleeve placed on and it helps to bring the swelling down. Hope this info helps you. Oh, I also wear a sleeve.
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Good Morning all,
I am NED for 5/6 years depending on when you start counting. I am still on exemestane. It does get better. Do I have fears, yes usually around appointments and tests. And I still get weepy at my kids events giving thanks that I could see them, and praying to see many more. But I also have days, weeks that go by and I don't give C a second thought.
Sending Sunshine from Miami.....
Vivian
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ALTHOUGH THIS HAS NOT BEEN FUN FOR ME, I WANTED TO TRY TO GIVE YOU SOMETHING TO LAUGH A LITTLE, BUT PLEASE NOT TO HARD THIS IS THE TRUE STORY OF MY LIFE!! CANCER SHIT THAT WAS A BREEZE! MY ORIGINAL POST FROM 2018! THANKS TO ALL WHO HAVE RESPONDED W AMAZING AND HEARTFELT WISHES! LOVE YOU ALL!!
I hope this story I am sharing will find you in great health. I was diagnosed with her2 positive lobular carcinoma in 2009 about February. It never really hit me until I went to the surgeon who said that my left breast must be removed. Then it was my choice to have a double mastectomy. I was 38 years old with four children and married. It didn't quite hit me that I actually had cancer or that this was something very serious until I came out of surgery after the double mastectomy and so nothing left but an in cave chest. In addition about a week later I was informed that my left axillary lymph nodes all tested positive for cancer as well which led to additional surgeries. I went on from the surgeries and was told I would have to receive the chemotherapy with taxotere, radiation therapy and follow with tamoxifen for five years. I'm probably unlike anyone on this site. I didn't like people talking staring looking questioning. I believe I approach this in a totally different way. I wore prosthetic bra to cover up my double mastectomy. I went to several chemotherapy appointments, did go to the radiation oncologist at one point But ultimately decided I was not going to do that right off the bat. This would have had interfered with the way I was going to have reconstruction which was where I was focused. Now by any means I do not suggest this as I do not believe any treatment hurts or causes any type of cancer to remain or to come back . I ended up against medical advice going and having reconstruction without knowledge of both my oncologist and without my plastic surgeon being aware that I was not finished with my treatment. There's a few reasons for this I didn't have any support. I went to my chemotherapy appointments by myself. My husband lacked the ability to be a support to me in any way. In fact as I drew more interested in what I can do to help live a lot longer he grew interested in making sure I stayed just right where I was. He was making travels to my hometown of Philadelphia to research my medical issues with other doctors and researchers very difficult. And Incredibly long story short, he would go so far as to have me incarcerated from month to month on various bogus charges that became unfounded and just cost me a little bit of money. They never would go to court but at the same time this was exposing me to A Whole New World of germs. I had to do what I thought I had to do it the time to make sure I was saving my life. So I decided I'm going to go ahead and have my plastic surgery to repair what cancer has taken from me for starters to make me feel better about myself. This did not go over very well obviously with my oncologist and rightfully so. As chemotherapy days after surgery is not by any means a good idea.. Surgery went well I was fine. This is where I stopped my treatment all together. It wasn't because I was unhappy with my oncologist or in denial of any sort but simply because I needed to ensure my well-being and at this point in time it was not going to be a good idea that I underwent more treatments. I could not stop the police from arresting me or from believing him or even caring about my medical issues. Okay now we can fast forward we are 9 years later now. I have not resumed chemotherapy, I did not receive any radiation, nor did take the tamoxifen for five years. In the past 9 years I have finished up all the reconstruction surgery that I needed to have. I have divorced the man that had made this decision in my life critical. I am still in a rut trying to get out of the same county as this man. But my reason for sharing my story in short of course is although I didn't do anything the way it should have been I am still here almost 10 years later. I am not saying the medical community does not know what they're doing. But I strongly do believe that you have to believe you have to believe in yourself and you have to believe that you are strong enough to fight this no matter and a reminder that everybody needs somebody to support them. Had I had somebody just one person who showed care and concern besides the Dr of course I probably would have finished. I was faced with additional challenges that should have never been in front of me. Nobody should have to face what I faced. And even now I still face challenges still hope to get out of this County and back home where I need to be. Just be as strong as you possibly can be, look for your support because sometimes they don't know you need it. Don't let anybody step in your way of treating yourself the best way you can. My Hope Is that breast cancer it's a thing in the past and the treatment is ever so easy. Even though I didn't go very far mine it was not an easy fight. I am nervous every time I enter a doctor's office knowing that I did not do all that I could do, all that the medical community has offered me. I thank God everyday I am still here. May God bless you. Jacqueline D Robbins Baldwin
SO THE DRAMA CONTINUES TO CONSUME ME!!! UHHHHHH
Still here!! Not to sure why! Okay February of this year would have been my 10 years. How the hell I did it, I don't know. Like I have posted I did not complete chemo, did absolutely no radiation, and did not take the pill tamoxifen 5 years. What I did was opt for a double-mastectomy and after surgery they informed me that ALL of my left axillary nodes were involved. So I had an additional surgery to remove all those nodes. I actually should have been wearing one of those sleeves or there should have been cause for me to wear one of them. I had one on standby for many years but I guess I don't need it.
I'm not sure if they consider spreading to your lymph nodes a metastasis or not. I kind of would think so since it did spread beyond my breast tissue.
Here's something I rarely say but really bothers me. I started with one small very small lump in my left breast. This little lump was biopsied. I have every reason to believe that the needle biopsy caused the spread of the cells. I really do believe that this has drug my cancer cells throughout my breast and into my left axillary lymph nodes. I find no other explanation for the extremely quick spreading of the , and I might not have that explanation cuz I never asked I'm ready to explain what I think. Sometimes I think I know what I know and that's the way it is. I believe because of the lymph nodes being involved and the amount of cancer in my breast they put a stage of 3B on me with her2 positive lobular carcinoma. That is a pretty serious stage for somebody that is 38 years old or anybody for that matter. I am not a churchgoer I don't rely on prayers, but in addition let me say I don't think they hurt at all. I could never explain why the events in my life have happened the way they did.
So back to this 10 years cancer free as of February 2019. I watched as the days in February came and left. I actually decided to make a doctor's appointment a few months ago, I was going to go ahead and get one of those damn check-ups that are we supposed to be getting every few months. I figured I needed to spoil myself and show these doctors im still alive. After all It has been several years, lol. I don't think I've had a pet scan since diagnosis. I know I haven't had another mammogram. I had a little bit of blood work here and there, but definitely did not have anything that I should. I guess some people may say how stupid or that im stubborn and some may say that I just don't want to know or dont care. The truth is so much less complicated then me! I honestly cannot stand to wait in waiting room for a doctor to tell me to go get some blood work and I'll see you back in a week. What? No I think the doctor should have called me and told me to get the blood work and that we could then discuss the results of the blood work at my appointment. I think because they weren't very efficient with my time it pissed me off. I mean really, I was already spending day in and day out trying to get rid of this asshole of a husband, at the same time trying not to go to jail on one of those bogus charges he convinces these county workers of. So yeah sure I had all the time in the world to come in there for you to give me a piece of paper for blood work. Maybe they should have thought a little bit about compassion and be a little less scientific and more personal, or maybe just some good oldbedside manner. Trust me, If I was your patient , you would know that I have had so much positive support and so many fans in this community cause my ex probably told you about the horrible person i was. He usually in normal jerkoff didnt leave anyone out of the loop that places judgement on CRITICALLY ill people. He was extremely convincing, he should have sold used cars. I also was showered with so many volunteers that were gonna be sure that this unlicensed bitch from philly was gonna get to these doctor's appointments and tests.
His actions indirectly had caused my license to be suspended. He didn't want to stop there, he would also inform any uniformed officer when i was pulling out of my driveway so that I would be pulled over before hitting the highway . There I was arrested again! This would absolutely consume me! There was my revolving door with no end in my sight. My income was that small social security check I was forced to try and live with. They don't factor in a narcissistic ex-husband, bail bonds money, and fines when they consider the amounts they are going to pay younger adults that become unable to work.
OKAY OKAY , so its 10 years, I make the doctors appointment and after missing two of them I show up to one! Lol I don't even think it bothered to pull my file prior to seeing me walk in the office. This was going to be my new oncologist. but what I didn't know they were associates of my prior oncologist. not that I was surprised but he already knew who I was. I don't doubt that these doctors have a "worst patient" bulletin board or meetings on "patients you could do without." Well this doctor says "what are you doing here" . I don't know why I was surprised, I mean they were supposed be professional and everything they went through all these years of schooling to land the perfect job. With confusion in my eyes I said "excuse me?" He said "you have not been to the doctors like you were supposed to what brings you here now?" Lol I couldnt believe what he said and kinda got a feeling he was a bit pissy about it. I was sure he had been talking to somebody and I was the subject. Lol. I said " 10 years cancer free!"with the biggest smile. well he didn't feel as though I should be smiling. He was a doctor and he was supposed to cure people. He was also supposed to believe in the medicine he prescribed. I guess it was kind of a slap in the face to him. I didn't allow him to Rain on My Parade. it took me till the third appointment I made for me to even show up. I was kind of serious and I wanted to ask some questions. I guess I wanted a little bit of an explanation as to why I was still walking on God's green earth. Oh but this doctor was not budging he wasn't thinking this was very funny. Well guess what he needed to know that I did the things I did because that was ME! I fought this battle on my own. I never thought poorly about a doctor. I never doubted their treatment plan. I just wasn't going to do it. I was going to pretend or think in my mind that there was nothing that they could do to make my situation better and there was nothing I could do to make it worse. Well now that he had that slap in the face that certainly wasn't intentional. I was there to figure this out. he simply says to me with the most serious of faces, "I don't think you had cancer." Wow hold up what did he just say? he said "I don't believe it." I'm thinking well I thought never crossed my mind but if I didn't why the hell did I get this double mastectomy? You know I did lose my hair too! For a few minutes I was thinking somebody must have played a joke on me. That would be entirely too cruel! But he finally says that the pathology was looked over again and he cannot explain why I was sitting there with him. I don't think he was thinking it was a miracle either. He didn't say nothing else other than thanks for coming in. And as I walked out of the office without a suggestion of a future appointment. I realized that he did not understand. I realized he didn't know that I really did take my life seriously and I also had a strong will to live despite all the drama that prevented me from getting the type of medical care that I should have needed. Well I won't be returning there! See I don't think I ever bothered to mention. During the time after my diagnosis and prior to my divorce I had an argument in which my ex said some pretty powerful little words that hurt more than any cancer, broken bones, or surgeries. He said "die bitch die." Those 3 words are what i think healed me. I Without knowing my body fought harder then any chemo could. I was not comfortable telling these scientists who knew how cancer is destroyed that something that was said cured me. I didn't wanna end up in a nut farm. So I kept that to myself, but now that its public, I would like to thank that narcissistic asshole for saving my life. My will to live grew with those words. I was never one to believe in fate. That's changed now,
I do believe that everything happens for a reason, I believe our bodies can heal themselves, and I believe that you can turn any negative into a positive.
I may not have fought the way I was supposed to. But I think that cancer was just brought upon me to show me not only who I married but how to ditch his ass too! I'm not sharing this story so people follow in my footsteps but you need to know that anything is possible as long as you put everything you have into it. I never wanted to be sick. No one does. What I didnt know was that my ex was probably what was going to kill me. I cant think of anything else that would explain this crazy ass life of mine! God bless all ! Wishing all the best of health.
Jacqueline Robbins Baldwin
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Reminds me of a little phlupfuff I had on righty. Things were deteriorating with my husband. I had a biopsy which was negative. I did not tell him for exactly the reason you describe above. It might have given him some sympathy for me, or it might not. The kids and I went to shelter one night, and when we returned there were signs that he had beaten the dog. Needless to say, I have been divorced a long time.
Your situation reminds me just how wicked men can be. There is one woman who dropped out, and I would certainly like to know the rest of her story; I was thinking about it as I was waking up this morning. Yes, your survival was miraculous.
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stats in my signature
I am almost 8.5 years out - I almost typed 7.5 years! that goes to show you do move on from this !!
I still think about it some days but it doesn't consume me like the early years that's for sure. You never think that day will come but it does.
My sadness these is seeing all the women around me who are now getting diagnosed. I have 2 friends going through it now and I know that the road they are going to travel is a tough one...i find comfort in knowing i can support them through this difficult time
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Congrats rozem!
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Hi , been a long time since i been on here wow 3 years now dang. I'm 8 years out. so anyone out their you do move on .. and OH HI, Rozem !!!
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So glad to read how well you are doing.
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A little late coming back this year because a breast MRI revealed a small lump. It was scary, but a follow up ultrasound showed only a benign fibroadenoma. SO, four years after surgery, I am still NED and counting my blessings. My thoughts go out to those undergoing treatment right noe. It isn't easy at the best of times and must be even more stressful right now. Take good care.
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Pipandor - Glad to hear it was nothing to worry about. I would have been scared too feeling a lump.
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5 years cancer free today! It feels great to reach this important date.
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Wonderful news Pipandor!
Congratulations on the 5 years lambma!
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congratulations to all that are beyond 5 or 10 years. You give hope to others and to myself diagnosed in January 2019with triple positive grade 3 cancer. I had my surgery August 19, 2019 (Goldilocks bilateral mastectomy where the brests are reconstructed with my one breast fat) and finished herceptin this April 20th. I am more anxious than happy because I was closely followed. But I guess after sometime herceptin does not give additional benefit.
My question I starting what date we have count 1 year and hopefully 5 years milestone ? After the surgery or when herceptin is stoped?
Recently i am feeling some discomfort around my brests and in upper arm ( mostly in the right affected breast) . Because lymph nodes are removed from only right one, i am guessing ithat is related to the more scans. My April mammogram was postponef until mid June because of covid-19. While I am convincing myself it is cut nerves and muscle around the brest, i am worried. I would like to know if anyone feels such discomfort 1 year after surgery.
Thanks and may we all stay safe and healthy
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forgot adding that I taking letrozole now.
What is your experience with it? I have some numbness or stiffness in my toes, on and of low pain in bones. Felt slightly dizzy a couple of times
Thank
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Margun - everyone counts differently. SOme count from date of diagnosis. Others count from date of surgery. And still others from the date of the last treatment. Personally, since I had a recurrence it's easier for me to remember the date of that 2nd diagnosis.
Sorry, I don't know anything about Lextrole. You should contact your doc about the dizziness. That's not something to fool with.
Check out the neuropathy threads. CIPN is cancer induced peripheral neuropathy. You haven't mentioned other chemo, but several of them - particularly taxotere & taxol - can cause neuropathy. The numbness may "get better" over two years, but many of us will have it forever. Sounds like at least you don't have the extreme pain some women have.
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I had lymph nodes removed under my left arm in early 2015 and that arm is still a bit stiff and numb. Hope that helps. The bottom of my feet are still numb from Taxol. Better to be alive with numbness. Grateful, Jean
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zjrosenthal. Absolutely, it is better alive with some stiffness and muscle bone aches . It is just when the discomfort is around the affected area I get anxious. When it gets better I forget about it there is so much other things to worry anyway.
It is encouraging to see that you 5 years out and doing well. May we all stay healthy for many many years. I am triple positive and I am taking letrozole. I saw that you are just er- but pr positive and still taking hormone pills. So I guess if you are even one hormone positive you must take hormone pills?
I have a friend who is her2- and er/pr positive grade 2. She was given a choice take or not take Tamoxifen. She decided do not take because, on another hand, her gynaecologist told her that in her place she would not take it. Perhaps because her grade is only 2? Myself I am taking the letrozole as recommended by my MO.
I am in fifties only and I am guessing you are even younger because you are taking tamoxifen. I hope our efforts gives as many years and even decades healthy life.
Take care
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Hello Ladies,
I am joining the 15 years club NED officially!
This despite phenomenally poor prognosticators way back.
I am healthy and living large and in gratitude everyday.
Wishing all the very best.
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Dear Ikc. Congratulations for this huge milestone and wish you have many more healthy years to come. I am immensely grateful to you for taking your time to come back here and to post here to encourage me and other new her2 positives.
I perhaps read all your post about being 9, 10,12... and now 15 cancer free. I am not sure but I think I did not read more than 15 years here but hopefully We will.
God bless you. Thank you again from the bottom of my heart.
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WOW!! Linda K dx'd May 05 Stage IIIC erpr-, her pos, 12 pos nodes Congratulations!
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Congratulations lkc on the 15 years!
I guess I am officially a survivor. Just passed the one year mark (from diagnosis). Almost finished with my year of Herceptin. Not sure when I'll get the port out.
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Congrats Ikc! 15 years is such a milestone. I will hit my 4 year mark next week and I appreciate everyday so much more than I ever have! Life is amazing and we are so lucky to beat bc!!!
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lkc - I love it when you post! You are five years ahead of me, this year will be 10 years for me, at my annual MO appt he high-fived me, which I thought was so cute!. I think it is so important for those of us who have been so fortunate to be here to offer hope to more recently diagnosed Her2+ folks, and I appreciate that you return to do that! I am so happy for you!
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Congrats to you both, lkc and SpecialK! And yes, SpecialK, I could not agree more about how encouraging it is to those far behind you to hear of women doing well many years later. When I was in chemo, I never posted and only lurked, but I can promise you, when I would read of success stories like yours, it would give me HOPE, and it still does!
xo,
Beesy
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- I am er+, pr- taking Tamox for 10 yrs. Just passed 5yrs. I am 76 and taking tamox since I have osteopenia and it also is a good for the bones. Jean
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congrats to all beating her2 bc. You give hope for ones ladies. Thanks
SpecialK- you had bmx, chemo and anti hormone pills but no radio. The radio is not suggested to me by my breast surgeon because the benefit did not outweigh the se and I like to know if it was your case? If yes, what was the explanation given by your docto not apply another safety measure against her2? Thanks
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margun - during BMX my sentinel node was declared clear and no additional nodes were removed during that surgery. At my post-op appt I was told that my sentinel was actually positive based on what was seen in the lab later. Both my BS and my MO insisted on removal of levels 1 & 2 nodes - because of the Her2+ aspect, so I had ALND five weeks after the BMX. That surgery revealed a much larger positive node, but because I had complete axillary clearance and a very thorough mastectomy with excellent margins, radiation was not recommended. I asked both docs on two different occasions and they consistently indicated radiation was not needed. My BS was the former head of breast surgery at an NCI center, and my MO is at the largest private oncology practice in the US, I trusted their opinions so I did not pursue a radiation consult.
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thanks SpecialK . Me too, I followed my surgeon’s recommendation and did not do radio. As she said the risk outweighs the benefit and even though the her2 cancer scared me and the chemo was so awful, I decided to listen the experts. May we all stay safe and healthy
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