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.
Hi all. i just cant understand why when herceptin course is finished they just assume everything is clear/ without doing further tests.. or is it just me?
Yes me too, I am part of this group Her2+ grade 3. I was dx June 08 which was followed with WLE, 3 x Fec, 3 x Tax, 25 rads and then 18 Herceptin. I didn't still don't fully understand this Her 2+ but was pleased when I heard I would be receiving Herceptin. I must admit the only thing I had heard of it was on the news that there were ladies in this country fighting for the right to be given this drug Herceptin, so I actually felt lucky to be receiving it!!
I received my last Herceptin December 09 and I am now treatment free, which is great and I do try to put it to the back of my mind but it still rears its ugly little head and probably always will and I must admit there are days when I am down and worried when I think shouldnt us girls who are Her2+ be given this for life to stop it coming back. I know this isn't going to happen but I was willing to throw anything at this thing to help get rid of it and prevent it from coming back.
Good luck and best wishes to you all.
Hiya - I had a gr3, er-, pr-, HER3+ tumour, 1.8 cm. Had a Sentinal Node Biopsy which was clear so no positive nodes and a lumpectomy in September with clear margins. Chemo has just finished last week and radiotherapy starts at the end of April with Herceptin starting at the end of that.
No idea what the HER+ really means for me but like the other girls I feel that at least this is something that can be done about it so I will press on with the advice/treatment plan that the onc has given me. Hate the thought of all the treatment but really want to live to be a very old cranky old woman !
Good luck everyone xx
Just to let you know, my sons girlfriend is in labour went in this morn, just waiting for news. Will let you all know
Hi there, i really dont know whether its strongly pos or not, result just says positive and thats from a biopsy. They say they can tell lots with a biopsy so i have to go with the positive result for now. Suppose they will no more when they do the op.
Thanks for your good wishes for tomorrow Lynn, you will know what im going through the now.
This is a good thread for everyone who is her2+ to stay in touch.
regards Anne x
I was grade 3 er+ pr+ her++ but i didnt have chemo or herceptin.
When you get your her2 result it is scored on a 1-3, 1 being neg and 3 being pos. I was a 2 and some hospitals call that her2 negative. However, in my hosp they then do a FISH test if you are a 2. FISH neg does not get offered herceptin but FISH positive does.
I was fish positive so I was offered herceptin. However, my onc said they could not give it without chemo, and the benefit of chemo AND herceptin together, for me, was 3% less chance of it coming back in 2 years. I was advised that the risks outweighed the benefits as I had a small lump, neg nodes, and being 8/8 for both hormones meant I was being put on zoladex and tamox anyway. My onc said if it were his wife with my results he wouldnt want her to have it.
I went with his advice and have just reached my 2 years clear.
I think herceptin benefits more if you are a +++ rather than a ++. Or perhaps node neg her2 are less agressive.....?
I am grade 3 her2 er+ pr+ my onc. congratulated me on hitting the jackpot!! I have had wle and 1st chemo.Would be nice to compare notes. x
Hi Anne - i'm still waiting on final confirmation of Her2 status - been given a preliminary negative at the moment. thought i's bump it up again for you - there must be loads. Thinking of you for tomorrow.
just bumping this, havnt heard anything for a while xx
anyone else with this diagnoses?
Just thought I'd update you all. Still feeling a bit negative as I want to live another 30 years and my husband says I will live 30 years but feel I won't make it.
I had my second chemo on 26th February through my Port which was great apart from the fact that the nurse who administered my FEC pressed so hard that I was in pain and by the end of the week, I ended up in hospital because of the pain and breathlessness which my oncologist thought may be due to a Pulmonary Embolism.
I was at the A and E last night and given a blood thinning injection and because my white count cell count (despite having a blood boosting injection the day after Chemo) has dropped from 15 to 1.4 the nurses gave me a face mask to wear to prevent my catching anything from them.
I had another blood thinning injection today and have another tomorrow. Then on Monday they will give me a CT scan just to confirm that there is no blood clot.
I had an xray yesterday afternoon to ensure my port hadn't moved and I will say if you are offered a port - take it take it. It is fantastic no pain in the hand when chemo goes in or when bloods are taken as they can also be taken from the port.
One thing that is worry be again! is that my oncologist said yesterday that I shouldn't be going to work when on Chemotherapy. I really need to work as we need the money but have actually been signed off for a month as my philbitis is so painful.
My lovely sister has offered a room at her house while I have all my treatment of chemotherapy, radiotherapy and Herceptin. She doesn't work and my brother and mum are in Yorkshire as well. My sister will take me to all my treatments and be on call when I end up in hospital like I did this weekend.
There is only one problem, my husband who takes me to chemo doesn't want me to go as he doesn't like being on his own but I want to go.
He is a MD of a company and has complained about the time spent at the hospital, doesn't sleep well because I don't sleep well sometimes and fidgit at night. Me going to my sister's would relieve him of all the hospital trips and allow him now to be stressed and run the company without the days spent ferrying me back and forth.
I am going to post the bit about spending my chemo/radio/herceptin time with my sister in a new post in case nobody responds to this.
Hope everyone is well and surviving the horrid Chemo which actually is not that bad. Two perhaps three days of queezy feeling, no hair, dry skin, rough mouth, swollen ankles - that's about it - I can certainly cope with that.
I was dx in June 08 with grade 3, HER2+ IBC and had chemo first, then mx, followed by rads and a year of Herceptin.
This year I have started a year without cancer treatment so hope to be optimistic for the future. I am hoping to have a recon this year and look forward to that happening to put behind me the last 2 years.
It is daunting when first dx, but my Onc told me that these days being HER2+ is no different to non HER2+ because of Herceptin.
Tomorrow I am starting treatment for hypothyroidism, another life long illness along with diabetes, but at least I have a reason for my fatigue, feeling cold all the time, dry skin, overweight etc. etc. so I hope to enjoy a "new me" eventually.
Good luck with all your treatment
And another one.
I was diagnosed 1st April 09 with Inflammatory Breast Cancer and the tumour was first measured at over 12cm. (HER+ ER/PR-). Had 3 Fec/3Tax then right mastectomy and ancilliary clearance in Sept followed by 20 rads and now on herceptin. I was very lucky that no nodes were affected and the chemo reduced the tumour to 1.5cm. planning to go back to work on 1st March.
Bboonie, I would say one of the advantages of being on a trial is that you are very closely monitored. Many of us have found it hard once active treatment ends and you stop having regular meetings with your medical team. Good luck whatever you decide to do.
Night sweats are currently keeping me off my sleep. Covers on - covers off - covers on - covers off - covers on etc..... arrgh! Going back to work will be interesting. At the moment I struggle to get out of bed before 9 am. Would love to retire but at 48 there's not much chance of that.
I more here - Diagnosed August 09. Left Mastectomy, 2 lymph nodes affected. I have just had my last chemo (2 FEC, 3 Taxotere). I had my 1st initial planning session for radiotherapy, the 2nd due this Wednesday morning. My 1st radiotherapy due on the 24th followed by on the same day my 1st Herceptin. I am due to have 25 rads and 18 herceptin. I have been asked to take part in a research trial, to see if 6 months herceptin is as effective as 12 months. I don't know whether to take part or not, I have a meeting with the research oncologist on the 12th March is discuss it. I am 55 and I am hoping to return to work after Easter.
Hi Yep one more here, Dx begining Dec, op on 17th dec, found out my results last week eventually HER grade 3 Possitive ER Positive with 22 nodes removed 16 infected. I am 42 years old.
I start 8 sessions of chemo this Thursday plus herceptin, radiotherapy and tamoxifen. My tumour was 5.5.
I too came out of hospital firstly with Seroma, then now lymphodema, my onc´s adviced not to lift anything over a bag of sugar in weight and too be honest this seems to have helped.
As for sleeping, welcome to the club!!! I live with 3 grown men!!! OH and sons, who have now given up one of there rooms and now share and turned it into a girlie retreat room for me, so now I have my comp, dvd etc all set up there it´s great!!!
Good luck, Love Teresa x
I was diagnosed in April 2007 grade 3 ER and PR pos, HER2 pos, no nodes.
I had WLE, 4 FEC (couldn't have more as so ill), 6 weeks rads,a year on Herceptin and then Arimidex. Now on Aromosin because of the SE from Arimidex but Aromasin is as bad. So far so good as NED at all check ups so far. I now have appts every 6 months rather than quarterly.
Hello. I'm another one - HER2+ Grade 3, diagnosed Dec 06. I had 2 positive nodes. At first I was terrified by the HER2 + diagnosis but gradually learned to accept it. Now - as others have said - I believe that Herceptin puts us in an equal position to HER negative people.
I've had WLE, ANC, chemo, radiotherapy, Herceptin and am now on Aromasin. I try to put BC to the back of my mind as far as possible and to get on with life - keeping busy and doing the things I enjoy.
another here...dx December 06 4.5 lump, 4 nodes affected plus some vascular invasion. had mx rads then herceptin. finished treatment july 2008. apart from my broken ribs due to car accident I am well and try to keep a lid on the constant fear that we all have lurking somewhere inside of us. It is good to read these posts especially for those yet to go through it. take care all you out there love Eileen
I'm in your gang - dx May 09, 2 ops, 8 chemos, in middle of rads, tamoxifen and had 6 out of 18 herceptins. Yes, it freaks me out that it is more agressive, but as road runner says, the herceptin puts the prognosis on a similar level to a HER2- cancer. Just think of herceptin as another string your bow and take all you can get!! The results from herceptin are really good. I'm 38 and all this is still hell of a shock! One day at a time................
When I was diagnosed I had a 4-5cm lump, grade 3, widespread DCIS and spread to lymph nodes - def one but apparently several looked abnormal. Had chemo first 3 FEC and 3 Taxotere and then a mastectomy and lymph node removal - the operation only showed cancer left in one lymph node so I actually don't know how many were affected. I then radiotherapy and a year of herceptin. I was supposed to have all my treatment through a portacath but for various reasons I had to have it taken out so they just used my veins and they were fine.
I was diagnosed in June 2007. It is scarey and over time it gets easier to deal with.
You're not on your own by any means.
Hi mnc - sorry to hear you are feeling so down, you are not on your own. I am also Grade 3, Her2 positive - only found out today I was grade 3 had previously been told grade 2 when diagnosed with BC before christmas. I imagined all sorts of things when told about the Her2 result two weeks ago, mainly worst case scenario. I was awake most of the night just like you, (seems many of us have sleepless nights) before returning to clinic today, so now will be having chemotherapy, herceptin, radiotherapy and hormone therapy - I feel a bit more positive now as I feel I have some control back in my life whereas before it seemed like I was going down a rollercoaster with no brakes, I have read so many positive things about the treatment for our type of cancer and which makes me feel that I and others will be around to enjoy things in life for a long time, but I know that in future there will be days when I feel low, I will keep thinking my "champagne glass" is half full and not half empty. I hope all goes well with the insertion of your port and with the house move. Kind regards.
Hi I am also hers2 I had wle in Dec(nodes neg) and another one in Jan to gain wider margins . I have not started my treatment yet but the nurse thinks I will have 4 chemo and 15 rads then 18 herceptin. It is a long scarey road and I struggle to sleep so I am with you there. I go to see onc at the end of the month so I will know more then it would be nice to compare notes on our journey.
Hi, I was diagnosed at age 45 in October 2006, Grade 3,33mm tumour and Her 2 positive. My tumour was not found via the initial mammo and tests and I went in as a day patient to have a 46mm fibroid removed; the tumour was hidden underneath in the middle of it and the surgeon told me the following week. I went back into hospital 3 weeks later to have my armpit cleared and it was in 1 out of 22 nodes.
I had 4 FEC, 25 rads (including 5 as a boost), then 4 Taxotere which I found a very difficult drug to tolerate. I was given 13 cycles of Herceptin.
Physically, I feel fine, but had a difficult time emotionally,partly through being rendered post menopausal and problems with my sister's behaviour when I was ill. I received counselling for this and have now learned how to lead my life in a different way taking by accepting the fact I have had cancer.
I keep busy with work (I'm self employed, so have no choice!), study and do a bit of voluntary work. For me the key to feeling well is to have things to divert me away from dwelling on being ill. All my annual results have been good so far(touch wood). If I get to the end of remission next year it will be a big time for me as I also have my 25th wedding anniversary and 50th birthday.
My partner was diagnosed as Her2+, grade 3 in Nov 2004 with 5cm lump. Looks like she had at least 4 nodes positive (enlarged but not tested for cancer as she had chemo first. No cancer there when it came to surgery so looks like the FEC zapped it). We had to pay for herceptin as it was not available on NHS - but as she is still (fingers crossed) NED then looks like might have been best money we ever spent.
All the best,
Hi - another Grade 3, HER2+++ here. Was diagnosed in May 2007. Had 6 chemos, 25 rads and a year of Herceptin. I had 8/14 nodes affected. I used to worry about how aggressive the cancer was. My tumour was 6cm x 2.5cms invasive ductal. I am now 55.
It really used to worry me about my prognosis and the thought that it will come back will never go away but we learn to live with it.
Love to you
I too am Her2+, grade three, and with 3/16 nodes. I was dx three years ago this month, aged 44. I had mast, chemo, rads, herceptin (finally had the last one Dec 08), am currently on tamoxifen, and expect to be changed to an aromatase inhibitor some time this year. I am due to have a recon on 24th Feb. I am fit & well.
You should not worry about being Her2+ - if you have herceptin, it puts your prognosis at a similar level to someone who is not Her2+.
I'm Her2+, grade 3, ER/PR-, 5/14 nodes positive. I too have phlebitis in my arm from the attempts at getting a vein and have a port fitted now.
Have had my chemo, radiotherapy and continuing on Herceptin.
I understand your worry about Her2 and grade 3. Altho Her2+ diagnosis is aggressive, it does at least have Herceptin as a follow on treatment from chemo. For me, not being ER+, I would not have had many further options I don't think, so whilst I can't say I'm glad to be Her2+, I don't think triple negative is any better a diagnosis, which I would have been without the Her2 overexpression. No diagnosis of BC is good, obviously, but some have more treatment options than others. That's how I look at mine anyway...I guess it depends on your diagnosis.
Herceptin has had some great results in trials and is one of the most effective treatments seen in recent years. I'm just off to get another dose now.
All the best
I was diagnosed in April 2008 with high grade DCIS. Had a mastectomy and immediate reconstruction. Unfortunately the lymph nodes were positive with 13/13 showing traces of cancer. I was then re-diagnosed with Grade 3 hormone negative and HER2 postive. Have had the chemo and radiotheraphy and the Herceptin which finished on Xmas Eve 2009. I had to have a four month break from June 09 to September 09 because of heart issues caused by the Herceptin but which rectified without medication and enabled me to finish the Herceptin. At the moment I appear to be sympton free but remain ever vigilant. I can remember only too well how I felt when first diagnosed because I didn't display the 'usual symptons' one associates with cancer. I had never heard of DCIS and my diagnosis was like a bolt out of the blue especially when told of the lymph node involvement. I certainly didn't feel ill and lead a very active life...was described by my oncologist as 'a fit lady with a disease' It has been an amazing journey so far..physically still tire easily and emotionally have good days and bad days.
I wasn't sure whether to answer your post or not as I'm further down the line than you, but I think that's a good thing as I've seen lots of milestones I didn't think I'd see. However, I am back on treatment so that might worry you? But as you may have realised, everyone on here is very different, there are so many variations to our disease and it does help to hear other stories.
I was diagnosed just after my 2nd little boy was born in July 07 with grade 3, her2+, hormone neg ductal, and had chemo, rads, WLE and total lymph node clearance (12/15 nodes positive). I finished herceptin in oct 08 and was treatment free for 11 months.
I had a regional recurrence in sep 09 in my lymph nodes in neck and chest, but it hadn't spread anywhere else. So went back on herceptin and a new chemo called vinorolbine, but that didn't work well enough so am now on lapatinib (works in similar way to herceptin) and capecitabine. just need to have one more cycle then will have pet scan to see how things are responding. It was devastating that it came back, but that was because I had so many positive nodes, so it was very likely.
I'm doing ok - physically just a bit tired and various little side effects (no one would know from looking at me!!) - but psychologically things are hard esp with 4 and 2 year old.
I know how scary it is when you're coming to terms with all this at the beginning, but please use this forum to talk with others, see a psyhologist if you feel that would help (it has for me) and just be yourself as much as you can.
being her2 pos isn't very different now to being neg as we have herceptin and lapatinib to use which even things out, so don't dwell on that.
hope i have helped a bit?
Another Her2 positive grade 3 here. I was diagnosed last June. I had a lumpectomy followed my another op as they couldnt get clear margins. I had all my lymph nodes removed as well as I had cancer in 1 lymph node. I had my last chemo on the 21st Jan (4 Fec followed by 3 Tax). I am due to start radiotherapy on the 26th Feb (went for my planning yesterday) this will be followed by a year of Herceptin. Its a long road but I am willing to travel on it to help keep the cancer away. I too felt very frightened when I found out that I was Her2+ and I had done all the reading up on it but I am now of the mind set that I am doing everything possible to help re occurance and can do no more than that. Like you I could not think about anything but cancer and especially it being what it was. If someone had told me I had won the lottery I wouldnt have even got excited about that! it was my every thought, morning, noon and night. I am not saying that I dont think about it anymore as that would be a lie but its not on my mind as much as it was and I do belive as time goes on and I get further down the line with my treatment it wont dominate my thoughts. I also feel that there are new treatments coming out to hopefully benefit our type of cancer (thank goodness for Herceptin!) If I can help you in anyway please ask. I really do know how you are feeling.
Love Karen xx
My lovely wife Janet has a very similar diagnosis to yours: HER2+, grade 3, 2 nodes, and also ER+/PR+. We just finished the chemo 4 weeks ago.
The way I look at it is this: whilst it is aggressive, at least we know some reasons why it is aggressive and something can be done about it: Herceptin to block the HER2 receptiveness and hormone therapy to get rid of Oestrogen. If it were aggressive and we didn't know why, then that would be more scary.
It's hard, I know, but with all the treatments they are throwing at it, the prognosis is actually quite good. I do hope you are able to come to terms with it and enjoy life (including your new house); the chances are that there will be a lot of it left.
Yep I'm just like you, diagnosed May 2007 grade 3 widespread DCIS, 2 out of 10 nodes affected. I've had a mastectomy, chemo, radiotheraphy, Herceptin and I'm currently on Tamoxifen until 2012.
At first I used to look at my daughter who was just 2 at the time and think I wouldn't see her grow up, I was devastated, but I'm still here to see her starting school in August. I've learnt not to think too far ahead but rather to go with the flow (sometimes easier said than done)and also not to get hung up on statistics, I did too much searching on the internet in the early days and scared myself witless, now I'm grateful for all the treatment I've had and the fact that at the moment I'm well.
I wish you all the very best, take care
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It is 5.35am and I can't sleep. Are there any Her2 grade 3, 2 positive nodes ladies that have gone through chemo, herceptin and tamoxifen?
All I see in my mind is that my cancer is agressive. I'm having a port fitted on Friday 12th February at mount vernon. I have had one chemo and have got phlebitis in one arm and lymphodema in the other am wearing a compression glove.
I can cope with the treatments (I think) and the painful phlebitis and the lymphodema but I can't cope with knowing that I am Her2 positive which is aggresive.
I am 50, 51 in May when my chemo finishes. We are moving to a new house in April but I am not excited.
Look forward to hearing from anyone and apologies for being so down.