Newly diagnosed with grade 3 HER BC

[Guest user]

How stupid am I!!! I am neither a man nor a younger woman, as my name indicates, although it refers to my job rather than my status.

[Guest user]

Hi. I am an absolute beginner. I obviously don't know enough about my "alien" yet. I was diagnosed 3 days ago. It measures 2 - 2.5. c.m. and it doesn't look as if my lymph nodes are affected. I know this can't be confirmed until after surgery. Not having surgery until 22/3, then radiotherapy. I felt it was just an inconvenience - the next thing to deal with, until I read the literature. There is far more to it I am beginning to realise. I have made 2 major decisions. 1. Don't ever underestimate the scale of the challenge and 2. Only think about the next thing. This is really happening!!!

[Guest user]

Hi Bunny3
I was given the same diagnosis in oct 2010 have had lumpectomy and sentinel node biopsy. i have just had 3rd chemo and start herceptin next week with further chemo. its a masssive shock isn't it but you will find this site a big help as we are all in the same situation. Just take each day one at a time and take plenty of time out when you can. the chemo does make you very tired and achey but i have had no sickness just a bit of nausea. I believe the herceptin has no side effects so its just getting through the chemo.

take care xxxx

[ChoccieMuffin]

No
Evidence of
Disease.

We all fancy NED, he's a great bloke and we want to go out with him! (Out of the consulting room, of course.) 😄

[Guest user]

Thanks ladies - feel a bit more confident about the HER2 thing now. Seeing onc on Tue to get going on Herceptin and rads. Keep getting large seromas from my surgery (going for 5th drainage on Fri). Please can you let me know what NED stands for - sorry new to this.
Thanks
x

[Nottsgal]

Thanks CM, that makes sense.

[ChoccieMuffin]

Nottsgal, if the tumour had been close to the chest wall they might have wanted to give you rads, but as you've had a mastectomy you may not need to have rads because there isn't any breast tissue that might still have the odd cancer cell lurking, which is what radiotherapy is for.

[Nottsgal]

I'm like CM. her 2++ and ER+ (6 out of 😎 and no nodes. I wasn't offered TAX, just (lol) 6 FEC, then it was supposed to be RADS, herceptin and Tamoxifen. My onc has now questioned whether I need RADS 'because the chemo and herceptin target the whole body whereas the RADs only target where the cancer was' but as I had a mx and there were clear margins, there allegedly isn't any cancer there now. Not that I've had any scans to check where cancer might or might not be.

[ChoccieMuffin]

I think the Tax is because there's a positive node, I've got HER2+ and Er/Pr+ so the full works including rads, but negative nodes so I'm due 6 x FEC.

Other than that, I completely agree with the Herceptin + Tax. I have read that having them both together makes them BOTH more effective, and of course knocks off a couple of months from the length of treatment if you can have them together.

[Annie22]

Moet,

Are you sure you're not getting the Herceptin and the Tax together? I only suggest this as maybe your treatment isn't as long as think. The reason you can't have Herceptin with FEC is that they are not compatible, which is why Tax is given (so that you can get Herceptin earlier to stop those little HER2 buggers from stimulating the cancer). I've had 3 FEC, and now am having 3 TAX combined with Herceptin. Might be worth asking.

[TSR]

Moet,
I am in a similar position to you, with the exception, that I had all the information from the start. I have just finished chemo, and will have my mx next month. The key difference is that you had a horrible shock with your diagnosis, as do we all, but then another to follow. I think our brains then automatically wait for the NEXT big shock at that point. There are quite a few women on this site who have experienced diagnosis in the same way to yours who I'm sure will be able to respond. As far as the treatment goes - it does a great job, don't worry about the herceptin, there are very few se's.
Hope you get the reassurance you need,
Tracey

[Guest user]

Hi Everyone
I was diagnosed on 9th Dec - got lumpectomy and snb on 22 Dec. thought all went well. results early jan - needed mx and node clearance. Turned out 1/12 nodes positive, her2 pos. Have just had 1st cycle of chemo. 3 x FEC, and 3xdocetaxol. to get rads, and then herceptin at the end of all that. Terrified!! Onc has given me good prognosis. Why cant I take it on board? Will the fear lessen? Grateful for any comments from anyone who has been in similar position.

[ChoccieMuffin]

Herceptin is also good poison, and has less effects than chemo, so I've been told. (Same as you with the grade 3 HER2+ so Herceptin is on the cards.)

I have also read that HER2+ tumours respond well to chemo and Herceptin, and the results you've had so far seem to bear that out. Well done for the good results.

CM

[TSR]

Doverm,
It sounds like you are doing really well, so don't get hung up on the herceptin thing. My onc explained it as another 'string to his bow.' I'm sure you will feel better after your app on Monday,
Tracey

[Guest user]

Hi everyone
I was dx with 38 mm tumour, G3 with a positive node in August2010; had chemo first, 3 x FEC and 3 Tax (Yuk to that one!). Scans after cycle 3 - tumour disappeared! 6 weeks post chemo and 2 weeks post lumpectomy and node clearance. Got results 2 days ago, pathologist could find no cancer cells in either lump or any of the nodes!! Have found out I am HER2 and ER positive but hadn't realise that HER2 meant aggressive cancer! Got to have 15 sessions of RX and Herceptin. Seeing my surgeon again on Monday so hope he can explain to me a bit more - felt a bit scared about the HER2 result. Chemo may be poison but it is good poison! xx

[TSR]

Thanks, Mizzy, another really positive story, much appreciated, x

[ChoccieMuffin]

Thank you, ladies. Looks like my guess of nodes=tax is correct and that HER2+ doesn't change the chemo, just adds Herceptin. Obviously I'll have to wait until I see the onc but it's an indication.

Results arrived today - clear margins, hurray! - so now just waiting for letter with appointment with onc and I'll find out more then.

[mizzy]

Hi Bunny i was dx Aug 07 grade 3, her2+, 7/21 nodes i had 3 x fec 3 x tax 25 rads and 18 herceptin ( i started my herceptin with the first tax) i had reduction/uplift on "good boob" last june and everything is ok so far. At the time of dx i was terrified of what the outcome would be as i just kept getting bad news after every appointment but i'm still here nearly 4yrs later NED SO i'm hopefull that all the cr**py treatment was worth it. And i must say that this site was a godsend to me i knew nothing about breast cancer and i learned so much just by reading the posts.
Good Luck Bunny and all you ladies on treatment. Mizzy xxx

[AnneG]

I was node negative and had FEC then rads then Herceptin. I was told that I didn't need tax because the nodes were clear. But they may have changed the recommended regime now as I was one of the really early ones to get Herceptin.
My heart function did start to decrease a little towards the end of the treatment, but not enough to cause any problems.

All the best
Anne

[Guest user]

Hi chocciemuffin,

I believe with her2+ bc the chemo you may get is herceptin with docetaxel (taxotere) i also had mine with carpoplatin x6 then after this had mx (i had neo adj chemo) followed by in my case, rads then 18 herceptin on its own.I had no prob with my heart, scans showed no damage.
I was node neg but it had latched into the skin(locally advanced).

It is rough but I was able to see my tumour shrink down from 5cm to 2.5 cm, so it was worth it.

I have been ned for 22 months.

Where you are now is a scary place but there is light at the end of the tunnel just take it one day at a time.

daisy.

[TSR]

Hey Choccie, my nodes are infected too, but I believe you do still get the Tax, just because of the 'aggressive' nature of the cancer, that way, if FEC doesn't kill it, Tax will. Also, you cannot have herceptin with FEc, because they both affect the heart. Hope that helps.

Dawn, Anne and Debs, thank you SO much. Like CM, I have had some very scared moments thinking about my HER+++ status. That really helped. Thank you. All the best to you all, and continued NED for MANY many years,
Tracey xx

[ChoccieMuffin]

Regarding chemo plans, I get the impression that node positive people generally get 3 x FEC and 3 x Tax. Is there a common regime for HER2+ people? Can I expect to get Tax even though I had clear nodes (HURRAY!!!) because of my HER2+ status?

Yes, I know the proper answer is to ask my onc, but seeing as I haven't even met my onc yet and won't meet him until I've been signed off by my surgeon and that won't happen until the path lab drags my re-excision tissue out from behind the cupboard and tests it, it's going to be a while before I get the chance to ask the onc.

If you've had clear nodes, HER2+ and Grade 3, what chemo did you get?

I'm not going to hold you to it, of course, but it would be nice to have a bit more of an idea, then I can get used to it and not have such a shock when I do find out (next month, next year...)

[Guest user]

Hey!
I am in the same boat and my occ said that with all the treatment including herceptin it is 90% likely that the cancer will never come back. It hadnt spread to my nodes so all clear there and have just started chemo. Happy with that so far as very view side effects. Dont stress about it as you can beat this!
Sarah x

[Midge]

My onc told me that they are very pleased with herceptin and that statistically ( we all know the problems with those) is take us almost on a par with er+ bc. It is still a question of how individually our bodies handle threatment. Some peoples cancer will be sorted by Chemo, but for those who aren't herceptin is a back up. We still live with the uncertainty that our treatment has worked, but Dawn is a fabulous example of how effective a treatment it can be.
When is was being trialled it was proving so successful that they stopped the trial to give it the women who were not on the herceptin section . Of course it has not been around long enough in primary bc for them to have the data they have for things like tamoxifen and they do not know the very long term outcomes. But it may prevent recurrence long enough for some women to avoid it ever coming back. I have had 4 now, my heart function has actually gone up from 60% to 65% and my only side effect is the odd headache and an upset stomach for one day, I can live with that. I am not sayingbi do not worry about being her2 + but the 'many ' conversations I have had with my onc about it has made me less stressed. Please ask your onc about it too and post there answers on here- all information is gratefully received.

Oh - just wondering if any of you her2+ ladies are BRACA 1 or 2 ? a friend saw a geneticist who said her 2 + made her risk of having one of these genes lower.

Debx

[AnneG]

I was diagnosed grade 3, ER 8/8 HER2+++ nearly 4 years ago. Had WLE, chemo, rads and a year of Herceptin and, so far so good as I have been NED at every check up and scan since then. I don't normally post much any more, but I thought that this might be encouraging for those of you having treatment now.

The treatment seems to go on forever, but I'm so glad it was all available for me. If I had been diagnosed a year or so before, I probably wouldn't have been able to get Herceptin.

Good luck to you all

Anne

[Guest user]

I'm triple negative so Her neg and hormone negative (oestrogen and progesterone)
My oncologist explained positive or+ means it is receptive and can be treated with Herceptin and Tamoxifen or the other one ,don't know it's name.
I'm to have 3 fec then 3 Tax followed by radiotherapy.Hope that helps.
Herceptin seems to have been a significant breakthrough -

[ChoccieMuffin]

Thank you Dawn, you give me hope. The news that I was HER2+ scared the pants off me, and I'm not sure I've got over that one. I haven't explained my fears to anyone else around me, but I confess I'm terrified. Reading your post makes a big difference. Thank you.

[dawnhc]

I wanted to wish those of you having ops the best of luck, and too for those starting on chemo. I am really the other end of the spectrum and have had a lot of recurrences, new tumours & secondaries. Now normally I wouldnt post about that in a thread like this but I don't think I would have had all those problems if herceptin had been available when I was first diagnosed. I didn't start on herceptin until I had already been dx with secondaries but for the past 7+ years my mets have been stable. I do have to stay on 3 weekly herceptin permanently. I really hope for all of you on herceptin with primaries that this will be the last you will see of further breast cancer problems.

Dawn
xx

[TSR]

Hi Donna,
My chemo has been FEC-T. That is 3 of the FEC, and then 3 Tax. The herceptin starts when the Tax does. I've done 5 cycles altogether, so 2 of the Tax and herceptin combination. I am on herceptin for a year. I have been ok with it. I can't say it is a walk in the park, but equally, I have had very good weeks, when I have been fine. They are 3weeks apart, and most people say they feel worse in the first week, then gradually a lot better.

Hope your CT scan goes ok, it is horrible waiting for the results, but they are done as standard. I had a bone scan too. You will also have a heart scan before the herceptin, because the main risk with it is the effect that it has on your heart.

My mx is booked for the 10th March, so that is my next hurdle. Hope you are ok- feel free to pm me if you like.
Tracey

[Bunny3]

Hi Tracey,

Have you had your chemo? What type did you have? I have my CT scan on Sunday and just awaiting appt with the oncologist!
Hope you are doing okay?

Donna xx

[TSR]

Hi Donna,
Yeah, me too ER and HER. It's not that unusual I was told, in younger women. I won't know the extent of the node involvement till after surgery, but have already started hereptin, and rads are planned after mx. It's the full Monty isn't it??!
Tracey

[Bunny3]

Hi all,

Hope you are all doing okay?

Had my results today from my ANC and had 2/22 lymph nodes with micromets in. Also found out I am ER+ as well as HER+++.
Need to have a CT and bone scan then will be starting chemo also having Rads, Herceptin and hormone therapy!

Best wishes to you all

Donna xx

[garelle]

Hi i had a drain in for 5 days and came home with it in. My mam got me a little draw string bag to carry it around in which was really useful. I worried about how i was going to sleep and what if i caught it. When i was abed i got a little foot stool and placed the drain on there and once i was asleep i never moved I think your body knows because i normally turn all night long. I was really worried about getting it removed but it was nothing. Hope everything goes ok x

[Guest user]

the drain worries me more than the op whats it like and how do you sleep with it in ugh im dreading it.

[Bunny3]

I agree good on you Penny!!
I know what you mean about being nervous about operations but you will be fine honest, I had my full node clearance on Thursday and am now at home with my drain in sooo glamourous I must say!
Just nervous about the results of that now, then will start treatment!
Take care and best wishes to you all x

[ChoccieMuffin]

Good on you Penny!

[alleycat]

hi all im doing fine just getting very nervous now about the operation. Im such a baby when it comes to anything like this im over my fear of needles now . Had a proper good night out with the girls and my brother so feeling a little hungover today xx
Take care all hope you are all doing ok xx

Penny

[TSR]

Hi Donna,
It does help, doesn't it? I am having my chemo up front, so can't give any advice on the surgery side. It's a bit weird in some ways, to be doing it this way round, but good in others. I can see the lump has shrunk, and also the chemo is such a mountain, it will be good to feel that I have climbed that one.
Managed to disgrace myself over the holidays in the cinema....all that naff music before the film starts. 'Wind beneath my wings' came on. It was not pretty!! Luckily I had my 3D glasses on, so don't think the kids noticed!
Tracey

[Bunny3]

Hi Tracey, thanks am abit nervous for the node clearance as I hate having a GA also do you know if you have to stay in hosp after the clearance, I did when I had my lumpectomy and SND cause I had an allergic reation to the blue dye!! (trust me)only for 1 night tho!
I hope you are doing okay? Have you finished your chemo now?

Thanks Penny, yeah it is all abit confusing, I have okay days then days when I am just reduced to tears it is such an emoyional rollercoaster, but I must say chatting with you guys on here has really helped. How are you and hows everything going?

Best wishes to you both

Donna xxx

[TSR]

Hi Bunny3,
Hope you are doing ok? Aaargh, waiting! All the scans are given as standard, as we are all told, but it doesn't help to reassure us does it? Hope you are not too worried. Good luck with the node clearance on the 13th - will get that in now, the Tax and herceptin this week seem to have addled my senses, taking over from where the FEC left off!
Tracey x

[alleycat]

yes i had all those scans done and cried at every one of them mainly because your still trying to come to terms with your breast cancer and the fact that you have it and also the other implications it has upon your life and your emotions. The day i got my dx is kind of a blur and nothing that anyone was saying to me was sinking in, it was only approx 4 weeks later that i started asking the questions that i should of been asking way before. Being told you have breast cancer is a shock to the system and evryone deals with it diffrently and there is no wrong way of dealing with it !!!. My spelling is awful by the way !!!. None of the scans hurt by the way its more the thought of them that sends you into a tizz !!!I hate needles but over the last few weeks ive got to grips with them. im not sure on the her positive making it more aggresive so i wont comment on it as i dont know alot about it as of yet. You will know more after surgery as they will do full tests on what they remove which normally takes 2-3 weeks to be done xx
Best wishesxx Penny

[Guest user]

Absolutely normal to have a whole lot of scans; bone, MRI, CT, PET... you do feel as if you are on a rollercoaster and cabt get off, but time does pass very quickly.
Best wishes
Marguerite

[Bunny3]

Hi, all thanks again for all your responses and words of support, very much appreciated x
Is it a standard practice that you are asked to have other scans such as MRI and CT scans etc..., as I vaguely remember my Consultant telling me that they will send me for these scans!
It is just so much to take in, I feel like im rambling now? xx

[Midge]

Hi when we say don't google, we don't mean don't ask questions. Talk to your onc about being her +++ and ask about the effectiveness of herceptin. I did google and it worried me more and I had to wait to talk to my onc about it clear things up. I could have done without that worry. The word aggressive is used to describe lots of different types of breast cancer, not just her 2 +++. Hope your onc can help you, but they can't guarantee us anything. I know women who have tiny, node negative er+ tumours with excellent prognosis who are just as worried. Good luck with your treatment. I have my 3rd herceptin next week and so far no real side effects.

Debx

[Guest user]

I am HER+ too. have had my first 2 Herceptin, the rest I will have at home. I am one of the older ones so no young children to worry about. have had MX, chemo and RADS. I didn't ask about my prognosis but will ask my ONC on the 24thn Jan, I am one who needs to know.
Good luck with everything

Carol

[TSR]

Bunny3,
I am HER+++ too. Don't google! Herceptin has only been used for newly diagnosed cancers like ours over the last few years, so a lot of stats you may read are not up to date. Yes, it is more aggressive, but with the herceptin treatment, that effectively raises your chances back up to the same as it would be without the HER+++. I am ER+ too, which is not unusual with younger women, so will have hormone therapy as well for 5 years. 'another string to our bow,' was how my onc put it!
Hope that helps. I've found it a hard topic to get help on in this forum for, but there are a few women who have posted about it if you trawl back through earlier posts. I had my first dose of herceptin yesterday. If you want to pm message me, am very happy if you think I can help,
Tracey

[Guest user]

sorry your having to come here but like everyone says keep positive and everything chemo etc is do able. The time passes quickly and i am already half way through chemo.
One thing I will say is that im the sort of person that needs to know everything and face it head on if you are that sort of person do google if your not dont google. I found researching my own cancer helped me to be informed and even surprise the surgeon and oncologist by reminding them to do the things they had forgotten. You have to be strong to sort the crap from the good research. So like they say dont google unless you can handle it. Wishing you all the best.

[Lucy_BCC]

Hi Bunny3 and welcome to the BCC forums

In addition to the support you have already received here, BCC offer services specifically aimed at younger women which you may find of interest and you can read more about those here:

http://www.breastcancercare.org.uk/about-us/our-services/support-for-younger-women/younger-womens-fo...

You may also find the resource pack published for anyone newly diagnosed useful along with the BCC publication about Herceptin and you can order copies via these links:

http://www.breastcancercare.org.uk/healthcare-professionals/publications/diagnosed-with-breast-cance...

http://www.breastcancercare.org.uk/healthcare-professionals/publications/treatment-and-side-effects/...

Our helpliners are here to offer you further support and information on 0808 800 6000, the line is open weekdays 9-5 and Sat 9-2.

Take care
Lucy

[Bunny3]

Hi alleycat, Thankyou for your response and I am so sorry that you are also going through this and so sorry of the loss of your Dad xx
I must say when reading your entry it did make me laugh about the drawing etc... thankyou!
I had lumpectomy on 23rd Dec and SND and got my results yesterday, no more surgery required for my breast as had clear margins but am to have full node clearance on 13th Jan at WHH in Ashford, Kent, then treatment to follow. I am a little confused about the HER positive as I believe that makes it a more aggressive cancer, am I right?
Best wishes to you xx

[alleycat]

hi i am also the same age as you and very sim diagnosis and treatment plans . I was dx on the 18th Nov and will be having a full mx chemo radio and hormone the same as you. My children are slightly older 11 and 13 but still no easier to break the news and i expect its harder when you have very young children. i feel much better now i know what they gonna be doing with my tic tac tit sorry but thats what i have nick named strange sense of humour and all that. Which was even stranger when the surgeon said they gonna have to draw on me before surgery my response was dont mnid you playing oxo mid operation but i draw the line at hangman. I will say through all the humour i still feel crappy about the whole situation.But laughing does make it easier. I lost my dad 5 years ago to lymphatic cancer he was dx in the july and passed away in the september. So i can understand your worries. If you want to pm me feel free to do so anything even questions you may think are stupid i have asked some really irrational questions to be honest but you are allowed to be. Hope all goes wellxx my operation is on the 17th jan where are you going for your lymph node clearance xxx oh and yes i agree with deb googling drove me mad.
Penny