So I was diagnosed Her2 positive, estrogen postive, grade 3. Massive tumour....am told they couldnt fit it all on the screen!! So i had the works: masectomy, FEC-T x6, Herceptin -had to stop at 6 months as was affecting my heart, 15 rounds of rads and then a year later DIEP reconstruction. Was put on Letrozole after my masectomy, horrible reaction, did better on examastane. Stuck it for 7yrs but then effects on my body & mind were too great so chose to stop. 4 months later feeling much better.....
So there is life after cancer treatment. But whatever you decide take good advice from your oncologist......they know the score and know your own particular case and the risks you run. Having said that at the time I thought I was on a dodgy wicket but I was wrong!! I was very lucky and took all the treatment offered.......if I hadnt doubt Id be here still, still clear of cancer.......wow!
Keep going it took me ages to recover from all the inital treatment so be kind. Some people bounce back quicker than others.... xx
Her2 is quite aggressive. I'm grade 3 as well. Are you hormone positive or negative? if hormone negative it's even more aggressive and likely to return as metastasis. I would do the chemo and there are two non-chemo drugs hercetin and perjeta that you should be on for a year afterward. I wouldn't try to do this naturally but I understand your wanting to keep the baby. Sometimes they can give a chemo the is safe for baby during pregnancy and another chemo afterwards. My sister-in-law did this and her son is now a teenager and totally fine. If you are set on trying to treat naturally at leas work with an integrative dr that has experience with this. There are many Facebook groups online with people attempting to cure naturally and most use a doctor specializing in integrative oncology - you can probably get a referral. I will say this - you have one chance to try to cure cancer and keep it from returning somewhere else. Do whatever you can now! Don't play with your life - there are great odds for her2+ patients with the new drugs! I was alternative and did fewer chemo cycles than recommended and now I'm stage 4 and will be in treatment for the rest of my life! Don't be like me - don't gamble with your life. Use the fabulous drugs you are fortunate to have available to you - give yourself the best shot at a cure you can. Good luck!
hi im 34 had breast cancer hers 2 positive. Had a mascetomy 8 weeks ago and 18 lymph nodes taken.
was telling them for over a year i had it and they kept turning me away. i have chosen no chemo and natural suppluments. i today have found out im pregnant. Is there any possible way i can keep this baby. Please does anyone no how bad this is or good or will it make the cancer spread
any advice please thinking of chemo and spread to the liver.
Hi, My name is Lisa. I am her2 positive and grade 3, but didn't have cancer in the lymph nodes. I just finished radiation but now am having trouble with two chemo pills: Anastrozole and Letrozole. Both are causing extreme stomach bloating. I read the side affects online and discussed with my medical oncologist but no where did i read that these two drugs cause terrible stomach distention. My stomach is about 6 to 7 inches bloated and it all started a few days after I began the first drug, Anastrozole. My oncologist took me off of it and started me on Letrozole but the same thing happened. I also have a sore throat with both of these drugs. Have you ran across anything like that in your sphere? Bloating?
I totally understand the aggressive cancer. Mine was too. And I worried about if it had spread elsewhere. But be encouraged that surgery and meds will help keep it from coming back. I am afraid I won't be able to tolerate any chemo pill from here on out and have nothing, fearing it will return. I will keep you in my prayers that your doctors will help to address your concerns.
Stay positive and surround yourself with positive people,
omg i couldnt have wrote it better i got a complete pathological response and im terrified every daylove ruth
It's great to hear that you had a complete pathological response too.
I might have misunderstood my oncologist, but I think my recurrence risk after surgery was c10% and the phase 2 treatments (radiotherapy, the ongoing 3-weekly HerPer injections, plus the daily hormone/bone tablets) takes that down to c3%.
I have bought a book about the history of Herceptin to read other the Christmas/NY break. I will let you know if I learn more.
On 22/12/21 i was diagnosed with a her 2 grade 2 37mm node positive cancer i got a pathological response to
can you tell me what did your oncologist say was your chance of reoccurence was
It's been great to read this thread. Thank you all.
I was diagnosed last winter aged 53 (c30mm lump in my right breast, ER+, and 2 lymph nodes impacted).
I am now nearly halfway through my post-op phesgo (her/per) injections, and about three months into taking leteroxole, ibandronic acid and vitD/calc. My radiotherapy was in August after a June lumpectomy. The six rounds of docetaxel with her/per between Feb and May led to a complete radiological and pathological response. That still feels like a miracle!
I've recently experienced a new side effect for me - tender ribs caused by the radiotherapy. My first recurrence wobble, given I'd forgotten this could happen at this stage.
November has also brought more energy as the fatigue finally starts to fade, and much improved finger nails after the subungual haemorrhaging at the end of chemo. The hot flushes might also be waning, or perhaps I am just getting very used to them ...
I have just signed-up to a Dec Moving Forward course and might join an in-person equivalent at my nearest Maggie's centre in the new year.
Very best wishes to all diagnosed as HER2+/Grade3,
Just checking in to say I’m 14 1/2 years on now. I have a neighbour who is two years ahead of me. All fit and well. Breast cancer is something that happened to me in the past, I rarely think about it now
I just wanted to say reading this thread and in particular your story has made me feel so much more positive about my situation. I was diagnosed with Her2 positives grade 3 er + and Pr+ breast cancer last May 2020. This past year has been a bit of a whirlwind of treatments and operations (cancer mixed in with covid has certainly been a challenge at times!) . A few major hiccups on the way being my initial mastectomy and reconstruction operation resulting in a collapsed lung, then 3 weeks later my implant failed (they felt due to the lack of oxygen to the wound straight after my op) so I had to have it removed and go flat. Safe to say I put all my operations behind me and cracked on with chemo and radiotherapy. I'm still receiving 3 weekly herceptin and perjeta injections and have 8 more to go but really have felt joy that this summer I've been able to start living my life properly again. I too gained considerable weight from the steroids and chemo which was tough, but I did the 100 miles walk challenge in May with a fantastic groups of friends and this helped me lose the pounds pretty quickly. I've also been trying to change my diet, eliminate stress and focus on the positives that I get to grab this life again by the balls and make the most of it. My one difficulty is the mental side...in that I feel I'm on borrowed time and that the cancer will return as its so aggressive. I try not to dwell on thinking like this but sometimes it creeps into my brain and I don't want to worry my family or friends any more as they see me now looking better, so they think I'm over it...done. I too haven't had any counselling, (covid has made face to face meetings impossible and I don't want to really talk over the phone) so I've quietly worried about things on my own and googled stuff late at night.. def not a good idea. But today I found this thread and realised that there are people out there like yourself who are living for a long time and moving on from cancer . 14 years is amazing and gives me such hope thankyou .I would say that this whole experience has made me a better, stronger person, proud of getting through everything and more appreciative of my friends and family than ever before I wish everyone the very best in their treatments...keep smiling everyone and keep believing you can do this...
Well I haven't been on here for years, not quite sure how I made it here today! I posted on this thread years ago (was three years on at the time) - I'm 12 1/2 years on now, still fit and well. In fact I got a PB at a half marathon yesterday! If you only finished herceptin in August, you're still in early days - I think it took more like six months to recover my energy after herceptin. So please don't despair, things will get better, just give yourself time.
i was diagnosing in May 2018 with HER2 position be Grade 3.
I initially had 7 chemo FEC-T with Perjeta and Herceptin with the last 3. Herceptin continued until August 2019. In November 2018 I had surgery and then 4 weeks of Radiotherapy. Surgery was the easiest by far. I’m still suffering from chemo/Herceptin and had bad burns from the Radiotherapy.
I am currently suffering from sleepless nights, hot sweats, peripheral neuropathy, my nails are still awful and some days I have no energy at all. 😡
I fully expected to feel like my old self by now and becoming increasingly depressed because I’m not.
Anyone else feeling the same??
Thank you for this and everyone's input. Just joined this site for first time as feeling rather low after my surgery 10 days ago. My diagnosis was just before last Christmas from a scan on my liver so very lucky it was found. Mine is grade 3 HER2 & ER positive so had chemo and antibody drugs for 12 weeks pre surgery. Now about to start radio and it feels so relentless. Plus on own at home though great support from friends. Sometimes very gloomy at night! So this site will really help I feel.
Diagnosed June 2014 grade 3 er+ he2+ 2 lymph nodes affected after full clearance. Had mastectomy in the July with immediate recon then chemo started Sept 14 finished Dec 14 with herceptin then rads Jan 15 ( 5 weeks worth )... went back to work full time in April 15 and continued with herceptin - Tamoxifen first now on Letrozole .... I think I’ve been very lucky in that all treatments went really well , sailed through surgery, chemo and rads with little effect and didn’t lose my hair! (Had cold cap tho ) I have found afterwards a bit harder tbh and have suffered with psychological effects and had a couple of major wobbles .... gp suggested talking therapies ..... no good for me I’m afraid ... wanted to talk about my childhood and lack of emotional warmth so the therapist and me parted company quite quickly lol .., do suffer with anxiety occasionally etc but try to deal with it in my own way ... still working full time and have a demanding job but part of that keeps me going.... I haven’t got time for cancer 😉 💪🏻🖕🏻
What a fantastic story. Thanks for sharing that. Really lively to hear you are doing so well after a scary diagnosis. So pleased for you xx
I was diagnosed in 2005 when I had just turned 30. I had inflammatory breast cancer and my right breast blew up. My oncologist said such cancer is extremely rare but especially rare in women my age. It saved my life, because by blowing up it alerted me to the fact something was wrong and I went to the Doctor. It turned out I was HER2 Positive and it had spread to my underarm lymph nodes and the lymph nodes in my neck. I received Herception every week for 20 weeks and chemo every 3 weeks for 6 rounds. After that they sent me for another PET scan and the cancer was gone. They were delighted because (unbeknownst to me at the time), they didn't think they could operate. The drugs had reduced my breast to a normal size again and I had a full mastectomy. Then my oncologist gave me 4 more rounds of chemo to 'be on the safe side' (carboplatin and Taxotere). I also had 5 weeks of radiation. After surgery, I had Herceptin every 3 weeks for 5 years. I gained 2 stone in weight from the steroids, but after chemo I started walking every day for 1.5 hours and the weight started to come off. It has been 14 years now, I am 44 and last week they discharged me from annual visits as they feel I am cured. I went back to college and studied for a Higher Diploma in Psychology which I really enjoyed. I did my thesis on Self-compassion in Cancer Survivors. I basically wanted to find out do those with higher levels of self-compassion experience lower levels of body image dissatisfaction as a result of cancer treatment. They do. So be kind to yourself and gentle in your recovery. You will get there and when you do you will be wiser for the experience. I wish you all a healthy cancer free future. Look after yourselves. Take care , J
So good to read this, I've been diagnosed with the same today - many thanks to you. Clare.
Hello, it's 4 1/2 years since I was diagnosed with grade 3 HER2 positive breast cancer. I had the usual chemo, herceptine and radiotherapy treatments and am on Anatrazole. Just got the yearly all clear, so just 1 to go.
Have peripheral neuropathy from the chemo so on Gabapentin.
Life was a struggle at first but got better and better. I am 68 this month and my daughter gets married in May, so lots to look forward to.
Well done Chrissie10. I'll be two years post diagnosis in May next year and to see you've just had the 5 year mammo all clear result is a great boost and thank you for sharing. I'm sorry to hear you're still sore with scar tissue after rads - so am I! Still small price to pay. Have a good Christmas and Happy New Year x
Hi Nimra, I was diagnosed with ER- PR- HER2+ grade 3 in 2008. I went through all the necessary treatment - mastectomy, chemo, rads herceptin. I'm sure my daughters felt the same as you when I was diagnosed and I can't believe it is now ten years since then. I have just had my routine mammogram which came back clear and fingers crossed it stays that way. Lots of lovely things have happened since 2008, both daughters have graduated, got their dream jobs, both married and one now a mother of two. Have spent the day with them watching Disney on Ice. When going through the process of treatment you don't ever believe life will get back to "normal" - but eventually it does and you appreciate those special moments even more. It is early days for you and your mom and she might find it best to just concentrate on getting through the treatment one stage at a time, she will have bad days as everyone does, but try to make the most of days when she is feeling ok it helps to have some normal routine away from hospital appointments. If you have any questions you need advice on and I can help please ask. I don't post on here often but I still find it a comfort to pop in.
Just came back on this site after many years and did not look carefully at where i was posting. I am very sorry but just replied to a post from 2010. I am really sorry and apologise
I feel i have to reply as you seem to be having a really rough time. I came on here for my sister who is 16 months post treament but I had cancer myself 13 years ago. It was grade3, Her2 positve with 3 pos nodes. I had lumpectomy, 6 rounds of chemo, 5 weeks of rads, 1 year Herceptin and 5 years of Arimidex. Sounds a lot of treatment but I hardly remember it now. I am cancer free and had my last neg mammogram about 8 months ago
It may be an aggressive cancer but you can still pull through. Do not bottle things up (I did and just made things worse) voice your fears, take all the help that is offered and stay positive. I hope and pray that you get through this and look back in years as i have done and hardly remeber anything about it xx
just read your post, I too was diagnosed with HER-2 positive Stage 3 last March after a routine mammogram, what a shock, there were no obvious signs at all, no lumps or pain. After being diagnosed I too went on the Rosco trial, had four rounds of chemo, then another four slightly changed, in with that was Herceptin, the cancer disappeared completely, I had a lumpectomy in November with removal of all lymph nodes from my left breast and had the other breast remodelled to match, still no signs of cancer, phew! Luckily I was able to choose my surgeon, I did lots of ground work and asking and now have amazing breasts, nipples moved, and at 70 years old I am very proud of them, something good came out of all the trauma. February brought fifteen rounds of Radiotherapy and at the end of May I finished the Herceptin injections at home. I was discharged from hospital cancer free and feel like a new woman.
My yearly mammogram is in December, not looking forward to it but it has to be done.
Like you I have changed my life, go walking, eat very healthily and feel much better.
I tried the cold cap but lost my hair after two weeks so I asked hubby to shave it off, I had bought a good wig in preparation which has been my constant companion until February when my hair was long enough to keep it off, I am keeping it short and it has the chemo curl, which all my friends tell me, looks good..
I still have after effects of chemo, it has left me deaf, also tinnitus, my toes still have peripheral neuropathy though not too bad, nails are slowly getting better, so life is good and I appreciate every minute as I am sure you do too.
I was diagnosed October 2017 with IDC, HER2, ER2 positive Grade 3, 20mm, 2 lymph node removal which thank goodness was negative. I had 4 rounds of chemo, Taxotere and Cyclophosphamide, 4 and a half weeks Radiotherapy, plus Herceptin (just had number 10 out of 18 ) and Letrozole for 10 years, it has been an emotional and eventful roller coaster to say the least, still a way to go but i'm getting through it and very thankful. 3 weeks a go i had a swelling come up under my arm, i'm waiting for an ultra sound appointment for that. My fisrt mammogram since diagnosis will be in November so not to long now, nearing the goal, wishing you all lots of positive thoughts and best wishes on your journeys.
Thank you for your post. A huge motivation for people like me. I am on Herceptin too. God Bless you.
Hello, I'm a her2 positive grade 3 with 2 lymph nodes involved (sentinel and 1 other). I have had chemo, radiotherapy and on herceptin 3 weekly. I have heard that the more aggressive the cancer the easier it is to zap and get rid of. I'm coming up to a year after diagnosis. When I have my rational head on, I am sure that it"s gone and won't come back, but a lot of the time my mind torments me with negative thoughts. It doesn't help that I still have pain and swelling under the arm and my affected breast is a cup size bigger than the other! I guess all we can do is be glad we got it before it marched on even further. I do find meditation and yoga help also music and tv shows that you can lose yourself in. Hope you"'re feeling better than you were the other morning. I"m new on here, so only just seen your thread. Take care
Hi this is my first post. I was diagnosed with stage 3 Her 2 positive Breast cancer. I had the usual treatment fec t, taxotol and 16 radiotherapy. I was 67 when diagnosed this time in my lymph node I had 23 out of 25 positive nodes. I had Breast cancer when I was 40 with a mastectomy and reconstruction and 15 years of tamoxifen no chemo then just radiotherapy. My problem is now although I was lucky to survive the first treatment and have so many years. I am now on aromisin (exemestane) and also I have had 45 herceptin and I am on it for the long term every 3 weeks. I am very grateful for this as I know it is expensive. I just feel so unwell all the time breathless and tired, I have told my oncologist. I have a ct scan every 6 months and also an echo. I have been told my heart is coping well, I have nodules on my lung which are stable. I feel so ungrateful that I don’t feel well, people must be fed up with me, I used to walk a lot, I have neuropathy which was made worse by treatment.. I was diagnosed late 2015. Will I ever feel better. Sorry to moan.
Hi Everyone, Just to say I too was diagnosed with Her2+, stage 3, grade 3, estrogen postive BC. The tumour was 9mm but I got a complete remission with 6xs FEC/T . Also had a masectomy, DIEP, 15 rounds of rads & 9 Herceptin jsbs. That was 3 years ago.
Still on estrogen blocker, loosing bone mass but apart from that doing well. I do still tire so going part time soon at work. Cant wait! Life is for living gals!! Who knows what the future holds none of us whether diagnosed with cancer or not truly know so best not to even try to crystal ball it!! BC teaches you to enjoy what you have NOW. Thats what I am doing & plan to carry on doing.
Hugs to all you brave ladies!! Xxx
Thank you so much for such a positive and inspiring post. Wishing you all best wishes for Christmas and 2018 and continuing good health
Yes Maddie, its great to hear from people who are a long way forward in this 'game' (I couldnt think what word to us, instead of journey....lol you all know what I mean, perhaps 'expedition of life' is better ?). Sometimes these forums can be a self-selecting group, of people who are just having problems and there are lots of people out there who are doing just fine and getting on with life happily. Wishing you a happy continued happy, healthy future x
Hi Maddie, what a lovely positive post to read on Christmas Eve! Delighted you are doing well 10 years on , long may it continue! Happy Christmas and thank you for coming on to post 🎄❤️
I was diagnosed with Her2+ ER+ Grade 3 breast cancer 10 YEARS AGO, and have been healthy with no sign of recurrence since the end of treatment. Hang in there! Believe that you can beat this thing, be patient with the process of healing (it took a while to trust that not every little ache wasn't the cancer coming back!), and be kind to yourself...
- I've got the same, but everyone is different and reactions are different too.......For example, they decided I won't have any radiotheraphy, but my protocole seems the same as you........
- reactions different, .................ask your doctor for problems, my reactions are not bad so far (2snd chimio), , after I'll have 12 taxon every week.....
- Don't think too much about it and live as usual in between, make yourself happy...........take pleasure...!
Relaxation may do you good as well...me, I've been practising yoga for a long time, I've started again after my operation (April 4th), it's getting OK, and I practice cycling a little and gardening a little for pleasure or painting, or sudoku, or .......music!
Take care, and stop worrying.....(that's the best therapy)
Im her 2 pos grade 3 only known by my node involvement as im cup cancer. have finished 4 fec and 4 tax due to have lymphs removed on 9th May as a day patient and then rads. ON Herceptin no 6 out of 18. All scans show NED will have to wait and see what nodes show after surgery but clinically clear.
Yup, another one here. Done FEC 3, 4 lots of T to go, then surgery, then Herceptin. Oh what fun :-S
Another HER2+ here. Age 49, Grade 3, Er+ 4/8, Pr+ 6/8, no nodes (hurrah!) and am in the middle of 6 x FEC, with rads, Herceptin and Tamoxifen to follow.
I had a portacath inserted as I really didn't want to get stabbed with cannulas for a year and a half, and I do want to get back in the swimming pool when I'm allowed (not supposed to during chemo).
It's good to read all the NED ladies posting, that is very reassuring. Bummer for you though, Annie22, let's hope it's a local recurrence which they treat as a new primary, and that your new treatment goes well. I find ether very useful for controlling the frogs, but sometimes the ether runs out and the whole bloomin' lot get out.
Still here, over four years on now. Fit and well.
Herceptin is a breeze after chemo, although tiredness tends to kick in after several months of it, so don't worry if you feel better at first, as the chemo tiredness recedes, but then go back downhill as this is the herceptin tiredness kicking in. This will go after you finish herceptin
Ooops, sorry....I didn't mean that everyone should get out there and focus on the good things...I mean't that I should.
Anyone who is feeling bad, should do exactly what they want - shut the curtains on the sun if they feel like it...I did.