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.
Quite late in the day and playing catch up, but I am HER2+++, ER+, Grade 3. Finished chemo on 1st April. Had 3 FEC, 3TAX (with Herceptin) and now doing just Herceptin for a year. Just starting on Arimidex (not Tamoxifen) for 5 years.
Yesterday was told that another lesion has been found, so the op planned to remove the reconstruction (which was where cancer came back) will be to remove this new lesion and send it for investigation.
Ws due to start rads in 6 weeks, but this will be changing according to what this other lesion is - which is a pain, as I planned my house move around the treatment. (Not to mention the terror I felt yesterday, on being told this latest news).
I think the thing about cancer, is that it is like controlling a box of frogs: you think everything is safely sorted and another frog jumps out and sends you chasing off to wrestle is back into the box.
It is all very tiring isn't it? The treatment is one thing, but the constant drip-feed of other bits of info that you have to get your head round takes some getting used to - and that's before deciding who/what/when to impart the info to.
Anyway, beautiful day today, so time to get out there and focus on the good stories, like Juliet.
Thank you Sharon for posting and thats great news about Juliet, it is reassuring to here news like that - Thanks
Best Wishes to you both
Hope you are doing okay?
Thanks for posting, I am not doing to bad thanks, I found FEC hard going especially with the nausea/sickness, am abit anxious about TAX as my Oncologist has advised not to go back to work yet especially as I will be starting TAX? I have days where I start to get panicky about it all, and scared of every ache and pain I get but im sure we all feel like this? Do you know if you get scanned (ct, bones etc...)anymore? I have had them done once and they showed no evidence of mets?
I am not to worried about Herceptin as the chemo nurses have said it is alot easier than chemo, obviously it can affect your heart but they said I will be closely monitored.
Best wishes to you
I was one of the early posters - posting about my partner who was diagnosed in ~November 2004. She has still, fingers crossed, NED.
Good luck with the Herceptin -Juliet certainly found it the 'easist' of all the treatments to cope with.
I am about 6 months ahead of you in treatment terms, with a very similar diagnosis. I have finished chemo (last Tax was 14th Feb), had 6 herceptin (3 with Tax, 3 without), out of a total 18. I am also having rads, and started Tamoxifen last month.
The herceptin is fine. It has few side effects, other than the main one, of stressing your heart. My latest MUGA showed some deterioration, but my onc said it was fine. The only other SE I have noticed, is it giving me a bit of an upset stomach, but that is much better without the Tax and antibiotics.
How are you coping?
I know this is an old post but I was just found it and thought I would post!!
I am 34 and have been diagnosed with grade 3, HER+++, ER+, 2/22 nodes had micromets in, I have currently had 3x FEC and due 1st TAX on 27th April, I will then have 1st Herceptin with 5th TAX for 12 months and also Tamoxifen.
Are any of the ladies who originally posted on here still posting on here, just wondered how you all are?
Thanks Tracey, I do think a years herceptin is a bit harsh especially with the effect it can have on your heart.. Did all your symptoms ie shortness of breath and swollen ankles go after you stopped the herceptin, also are you on femara?
My symptoms initially were shortness of breath , it got that bad that even when i walked a couple of steps i could not breathe and also swelling of my ankles with what seemed to be fluid.
I also had regular scans om my heart and I had one done earlier so they could see what was going on and when they did my scan I was found that my LVEF fraction?? not quite sure if I have got that right was really really low and was basically told NO MORE Herceptin for me. Still I had managed 13/17, there are trials currently running to see if 6 months Herceptin works just as well as 12 months!!
I hope this is of help
Problem is, by having all those scans you could be exposing yourself to even more stuff like x-ray radiation and I think this is one of the reasons they are not done routinely. The oncologists have to weigh everything up.
If you are worried about symptoms, in particular symptoms of secondaries, then the Cancer Research UK website is invaluable. I revisit the info from time to time and find it very reassuring.
Nearly 4 years down the line, I no longer constantly worry about this, it does get better. It never goes away, but I've learned how to file it away in a drawer so I can manage to get on with things. I've always figured it it's going to come back in my case it will and there is little I can do about it. I've also met or known people who were still here 35 years on which I find a comfort too.
Hi all, i still think they should offer everyone scans tests etc maybe every two years or so. I realise that this would be costly but all cancer sufferers are living with a time bomb and dont know if the gastly thing is back. Maybe if we had scans etc it would let us get on with living our lives instead of the constant worry and some people dont even know what symptoms to look out for.
I asked a relative of mines who is an expert in cancer and Radiotherapy (he is a Professor) about scans etc back in 2007 (I was diagnosed Grade 3 Her2+ in 2006). He told me cancer cells have to form a mass the size of the nail on your little finger before any scan will detect them, so a scan will not pick up rogue cells.
I had 2 oncology checks after I finished Herceptin, 2 weeks after I had the last treatment, then 3 months later. The last one was an extra appointment my oncologist gave me as she had referred me for some counselling and she was adamant they were not discharging me until they were satisfied my emotional well being was better; also because I had menopause issues. I was also told they were there if I had any suspicious symptoms during the remission period and to just contact my breast care nurse if I felt I had to be checked.
At the moment I just see a Breast Consultant once a year for my annual review and I am fine with that. It does get a lot better as time goes on and you are able to put things into the background a bit so you can get on with the business of living.
I totally agree, I wanted to know how they could be happy to stop treatment of herceptin without doing some sort of scan/check/test anything to see if there was any evidence of the cancer at all.
Hello mnc just to let you know I didnt experience any heart problems on herceptin at all, in fact my reading improved on my second test so everyone reacts differently. I would look at the positives of this drug rather than the negatives.
I had a 4 month break after 13 Herceptins from June to September 2009 due to the heart LVEF reading having dropped to 42%. I was not experiencing any other symptoms of heart failure such as shortage of breath and fluid retention. I was advised by the cardio ologist not to have any more herceptin but because of my grade 3 cancer with lymph node involvement I was determined to finish the course and luckily my oncologist was in agreement. My heart function rose to 59% without medication and I resumed the Herceptin and finished the 17th herceptin on Xmas Eve 2009. I appreciate not everyone has the opportunity to complete the full course and as mentioned in previous posts, trials are now taking place to see if six months of herceptin is sufficient as opposed to a years treatment. My oncologist is of the opinion that six months is sufficient but because he believes mental wellbeing to be as equally important as body wellbeing I was able to complete my course. At the moment I am classed as No Evidence of Disease but remain ever vigilant for any indication that the cancer may have returned.
Hi Tracey and everyone
I'm at the lister hosp in Stevenage at the moment waiting for my 3rd fec. I'm meant to be having taxotere in three weeks time along with my first herceptin.
I'm worried as all I read about Herceptin is heart failure. Tracey, what were the symptoms and are you fully recovered from the effects of herceptin?
I'm so glad you have finished your treatment and send love to you and everyone.
I was initially diagnosed Feb 06. 41 yrs. IDC Grade 3, Stage 3, 3cm Tumor ER 7/8 PR -. Herceptin ++++. 6 Lymph nodes with Cancer after full node clearance and full Radical Mastectomy. 1 node + sentinel node superclavicle.
4 x Epirubicin
4 x CMf.
13/17 Herceltin. Was not allowed any more as I went into heart failure!!
I have just posted in after treatment has finished. Went to Onc yesterday and he does not wish to see me for 12 months .... I can tell you I came out of his office on a high..
My prognosis at the time was not good if you looked at the NPI....
everyone is an indvidual and we all deal differently with each stage of our journey
But yes there is light at the end of the tunnel......
If you have any questions pls feel free to pm me and I will get back to you....
Love to you all
The specialist nurse at our Herceptin clinic appointment said there have been trials that have shown that one year of Herceptin treatment is just as effective as two years of treatment in reducing the risk of recurrence in early breast cancer. (Apparently there is a trial going ahead to see whether six months would also be as effective.)
When I asked some time ago (at the beginning of Janet's six months of chemo) about whether she will get scans, the answer was basically that, by the time a tumour would show up on a scan, there would probably already be other noticeable symptoms, and at this stage any escaped cancer cells would not be detectable in a scan.
I have seen no published evidence to confirm these views, but putting these two points together, it all does seem to make sense.