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.
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
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
Love
Tracey
xxxx
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?
Anne x
Hi,
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?
Best Wishes
Donna xx
Hi Donna,
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?
Tracey
X
Hello Donna,
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.
Sharon x
Hi Tracey,
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
Donna xx
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
Donna x
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.
Annie
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.
Annie
Hi Donna,
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
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.
Yup, another one here. Done FEC 3, 4 lots of T to go, then surgery, then Herceptin. Oh what fun :-S
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.
Hi there,
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…
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.
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
I was diagnosed in Sept 2017 HER -2 positive breast cancer and lymph nodes. I had a 12mm breast lump and confirmed 1 lymph node.
Took part in ROSCO trial with 4 chemo before lumpectomy & full anxiliary node clearance.
I had 4 x TC Chemo & Filgrastim.
Had my operation on 31st Jan breast lump had shrunk to 3mm. I had 15 lymph nodes removed evidence of cancer in 2 nodes but chemo had got rid of it. ?
9 days later was told I had full pathological response from chemo & operation. I’m now 4 weeks post op lumpectomy part was ok no issues other than losing part of my breast. Lymph nodes different story been painful and I have really bad cording. I’ve been having physio & my husband has been doing physio at home twice a day as shown by physiotherapist.
I start radiotherapy on 8th March. I’m still having herceptin via my portcath up to Sept.
My mammogram is 18th September. Inbetween I’ve got bone scan as I’ve stated on 5yr med called Letrozole 2.5mg.
I’m very positive I have changed my life and my diet as I never want this ever again.
Used cooling cap but lost top section of hair but it’s growing back nicely but I have a nice new wig that looks like the old me.
I’ll never be the old me again… but I’m positive and I’ll do whatever I can to keep myself healthy. I take supplements including selenium and my diet is organic.
Feel free to contact me if anybody needs help with anything.
Pauline x
Hello to everyone I have just been diagnosed to DIC Grade 3 Her2 positive and my journey / expedition starts on the 15th June. I have just spent 4 days on my own while my husband is away. I have sat listening to gentle music and absorbed processed and accepted what is happening. I am calm and prepared now anxious but not afraid. but I know myself pretty well and knew I just needed to be still and quiet. I am 67 and have the luxury of being able to do this and I know many ladies do not. But if I have learnt anything it is we need time to process when something awful happens. I know I shall be calling on you guys in the future when I have wobbled days . So thank you for being out there. The support is amazing