After Herceptin

Hi everyone

I guess I am having a moan and asking for advice/comments with this thread.

I have just had 16 of 17 Herceptin, I was fine until the 13th infusion but since I have had lots of the side effects except thankfully, the heart problems.

I have a mixture of emotions going on, I am pleased to be finishing the three weekly interruptions to my busy life but I am also worried about the security blanket being removed.
The nurse who administered the drug this week explained quite well about how Herceptin works with adjunctive (?sp) or mets conditions so I was a little more calm in looking ahead.

On the other hand I am just coming up to my 3rd ‘anniversary’ of discovering my lump. I have a mammogram next week and I am quite nervous because during the three years I have discovered a new lump around each of the ‘anniversaries’.

Generally I have been very positive but this morning I woke at 4.40am with a feeling of great dread an what felt like depression. I know this is all par for the course but I can not help the ‘what if’ feeling. I haven’t spoken to my husband much about how I feel because he has his own problems at the moment, mind I reckon he knows I am worrying.

Moan over, blooming weather doesn’t help much does it, and work tomorrow something I used to enjoy is now a chore!

Thanks for ‘listening’


Hi Carol
I too am coming to the end of Herceptin - last one in two weeks time and I 'm nervous., I also had a heart scan yesterday and was told I have a few leaky valves -whatever that means. I do however feel that at least I didn’t come to the end of my treatment abruptly i.e. after having the chemo, op and radiotherapy - I then had another 9 months of having herceptin. I know it’s hard as I’m going through the same as you. Sometimes I examine the area and am very nervous in case I find anything and other times I don’t want to look or feel for ages just in case! I do have counselling occasionally and it helps - maybe you could try this. Can you speak to your GP about this?
Best wishes and take care.
Ruby xx

Hi Ruby

Sorry you have to be in the same boat but I am glad to have you in it.

I had thought of counselling but I am quite a private person (She says going on a well used website!). I like the anonymity of this site and speaking to people who walk the same path.

I ought to go to the GP but one of them has found it difficult to maintain eye contact, one who is the dead opposite, grins from ear to ear and the third just a young whippersnapper.

Don’t get me wrong they are excellent GPs (Especially with my kids as they grew up), always happy to refer and take their time to listen but on BC they seem to flounder.

If I can be of a little help as a layman, or is that laywoman? Two of my children had heart valve problems ‘leaky values’ as it was called. It was due to the two flaps that cover the dividing chambers of the heart. The flaps did not quite meet as the pumping action closed them after the transfer of the blood.
This meant that they were fit and well except when they over exercised themselves, going slightly blue and breathless. This condition was fixed by a small operation when they were young, it involved a catheter being inserted into an artery (or vein can’t remember which) and this was fed into the heart where they corrected the problem.Everything was fine and they were in and out in a couple of days Perhaps they will monitor you and see if things settle down after the herceptin is finished. I hope all goes well.

Thank you for taking the time to reply
Take care

I finished Herceptin earlier in the year and have just finished 6 sessions of counselling which greatly helped me. As well as worrying about the removal of my safety blanket, I was struggling with a lot of post menopausal stuff (I pretty much went through an immediate menopause with little or no symptoms and apparently this can be worse than suffering all the hot flushes etc as everything just shuts off). When I was having Herceptin I was told it keeps on working for months after you finish, a bit like having rads.

I’m often very private about things too, but when I had the counselling I felt completely at ease as the psychologist didn’t know me and only had brief notes about my situation in the letter of referral from my oncologist. I’ve gone from thinking “what if” to focusing on the end of my remission in 3 years time and beyond. I’m now self employed and studying p/t, these were 2 things I was not able to cope with 6 months ago as I did not have the confidence.

Thank you Cherub, I didn’t realise the Herceptin worked for months after.
I still can’t get my head around counselling for myself though.

Take care

Before I started counselling, I read a couple of books by a life coach called Fiona Harrold. She has her own website (it comes up if you google it) and I found her stuff really helpful, so you might want to take a look. You can get her books really cheaply on Amazon.

HI Carol

Yes we certainly are in the same boat - it’s a difficult time however one thing I think about is that I don’t want to live my life thinking it will come back as if it doesn’t come back, I’ll have wasted all that time worrying. It’s not going to stop me worrying and there are plenty of women who do well and I try and remember that.

I try and think of the positives about the treatment such as the type of chemotherapy I was given, how well I responded to the treatment, the fact that my oncologist said he is over treating me, the fact that I’ve been given herceptin, the fact that during the operation they got good clear margins and as Cherub mentioned above, the fact that the drugs remain in your system for quite a few months afterwards.

I do have to keep reminding myself of the above and then I feel much better. I have had some counselling and it does help - if it’s the right person though for you. Also other things which have helped short term are things like the Look Good Feel Better workshop, complimentary therapies which some centres offer as well as coffee mornings.

So I’ve got a week and a half now until the end of my treatment!!! Yikes…
Ruby xxx

I was lucky enough to get on a Look Good Feel Better session back in the summer and found it was a real boost. I also met other ladies who had different types of cancer, not just BC and it made me feel very lucky because for some of them things were worse. Just getting the big bag of freebies was terrific - I wouldn’t be able to buy the really expensive stuff for myself.

My sleep has been slightly disturbed the past 2 or 3 nights and I think it’s because my mammo is coming up on Monday. Mind you, the follow up at the clinic is a month away, which makes me focus on the oncologists telling me they were not expecting this to come back within the remission period - I am sure if they were thinking otherwise the clinic appointment would have been within 7 days of the mammo, so that keeps me positive.

I do sometimes think the whole experience of moving on can be a bit of a poisoned chalice. I posted something about the fact having counselling had made me move on from where I was stuck earlier this week on another thread (I’m now s/employed and studying p/t, so quite focused now). I was politely reminded that some can’t move on due to secondaries; I totally accept that, but thankfully at this present point in time I’m not affected so I don’t dwell on it. Whilst I have empathy for others in a worse position, I don’t feel I can let things like that drag me backwards. We all have different stories, prognosis and experience and should respect that. A work associate of ours has recently been diagnosed with brain cancer and they can’t say whether he will be around for more than 2 years (2 months without treatment), so I do understand the difficulties faced by patients who are less fortunate. We also have another friend who has had leukaemia and 3 other cancers, but who leads a very full and active life.

Hi Ruby and Cherub,

Thank you for the link to the book and website I will pick up on that.

I had my mammogram Tuesday, they are very quick at letting you know if they want you back, I have heard nothing so that’s good. I don’t feel there is anything going on in by remaining boob anyway.

I am going to give myself a good talking too because I know this period of feeling down will pass. I had the motto, I am not going to live dying. That will be my mantra from now on.

I had my eyes tested on Tuesday too and the optician is very thorough and knows my medical history. She had a really good look with the magic torch and said all looks fine so I am now definitely going to put these persistent headaches down to the pressure of work.

I had a good old composed rant at work today and guess what, they are going to employ someone to support me! That should help, I called it succession planning they called it having no alternative!.

Well as you can probably pick out I am feeling better today.

Thank you both for the support.



Hi Carol and Cherub

Carol really pleased to hear you are feeling better now and work sound like they’re supporting you to which is great seeing the amount of time we spend there. I think once you get the mammo results out of the way, you’ll feel much better - it’s not been easy for you these last few years having been recalled on a few occasions. Also the fact that you’ve had an optician look into your eyes and know that he/she can spot abnormalities and that there were none gives you security too. I know that we’re all going to have our ups and downs as any little niggle is going to worry us no end.

Take care both of you.
Ruby xxxx

hi there my name is brenda im just lookin 4 someone to chat to i am new at all this. im 39 and was diagnosed in feb 06 with breast caner it spread to my lymph nodes under my arm then my neck and chest. then just as i was about to start my chemo found out i was pregnant with my 6th baby but sadly had to have a termination. had 4 lots of e-c then another 4 lots of another chemo was very sick and my muscles in my legs wouldnt work properly. in jan 08 i had a mastectomy and lymph node clearence on my right side then 15 shots of radio. just recently moved home and settled kids into new schools. had to change hospitals and drs just feeling very lost and low at the momment. i have my husband and 3 children but lost all the familiar faces that i had at the old hospital. i have reasontly found a lump on my elbow that my new dr is hopeing is just an infection. i have to go back to c him in a week to c if its gone but if it hasnt i have to have a bi-opp done on the lump as he siad it could be the cancer back again. so feeling very low at the moment and not sleepin very well. is there anyone out there who just feels like a chat? brenda

Hi Brenda

Please call our helpliners for further support and a ‘listening ear’, they can also refer you onto other support we can offer you such as our peer support service. This telephone service aims to quickly put you in touch with one of our trained peer supporters, who has had a personal experience of breast cancer. Our peer supporters are from diverse backgrounds and ages and have experienced different types of breast cancer and treatments. They are ready to listen, offer skilled emotional support and share their experiences and understanding.

The number to call is 0808 800 6000 weekdays 9-5 and Sat 9-2

Take care

Hi Brenda, nice to meet you sorry it is under these circumstances, I hope the lump turns out to be nothing serious, reading your post sounds like you haven’t had a very good time of it. It cannot be easy a new home and new hospital but I am sure you will be looked after by the doctors and nurses. I am off this morning for a check up with the onc and to have my bloods checked ready for Monday’s chemo. It is not an easy road we are travelling but one we must do, I hope you keep coming on this site and I am sure others will be along to have a chat soon, take care of yourself love junieliz

hi junieliz and lucy

thanks for your replys i have read lots of peoples words on the site it seems like a long road we all have to travel and yes isnt it funny hos we all do it. hope you got on well with your bloods im off monday for my herceptin 18th or 19th not sure as time passes so fast. hope your all well you take care of you to brenda