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Newly diagnosed - worried about being HER2+

25 REPLIES 25
NCPM
Member

Re: Newly diagnosed - worried about being HER2+

How are you? Is your treatment half way through? I start on Thursday and sounds like we’re in a very similar situation - only I have one son (5) and am a few years older.

 

i hope you’re doing well ... I was told fasting is bad but low carb diets have a proven record of working ... this is what I’m doing. Also organic, filtered / bottled water, and reducing caffeine... fingers crossed 🤞 

 

positive thoughts .... 

NCPM
Member

Re: Newly diagnosed - worried about being HER2+

Hey, how’s it going?

 

Ive recently been diagnosed with HER2+ too, and it’s in my lymph. I start chemo on Thursday. I’m scared because I have a 5 year old and I’m so worried how this will effect him. And, I’m just scared in general... 

 

I hope you’re coping with treatment and feeling positive ... 

topcat79
Member

Re: Newly diagnosed - worried about being HER2+

Hi Steph247,

I don't often look at the help forums/sites but this last week i joined Macmillan to see if i could find anyone with the same or similar diagnosis to me. Then today i looked up somethings on here and I've just joined the website after reading your post! I hope you are doing ok?

I'm 39 and last year aged 38 was diagnosed with an aggressive grade3, ER+, HER2+ which had spread to my nodes, plus geneology discovered i also have something called chek2 gene mutation which is very rare (increases chances of certain cancers, breast is doubled!) I under went 6 rounds of chemo, lumpectomy and full node removal then 18 sessions of radiotherapy which only finished last week! I continue with Herceptin until the summer. Plus aromasin for 5 years and goserelin tummy injection every 28days for 5 years.

I'm married with 2 boys 10 & 12.

Telling them was by far the hardest thing i'v EVER had to do, but once told it meant i didn't have to hide anything (within reason). Where possible and on their terms i kept them involved with various things that they could help me with like chemo: I chose not to have the cold cap as no definate certainty about hair loss, so i chose to cut hair short and then when it started to come away i took control and had it shaved off. I explained to my children that my hair would fall out but suggested they choose some headwear for me. Interesting but fun! I had a star wars scarf and one that resembled the pixels of minecraft!! Yes i could have been embarressed by their choices but to see their smile, to know they were trying to help me, PRICELESS 🙂 I wore them with pride. Plus loads of other beautiful girly designs which the younger helped by matching them with various tops! 

Their schools have been amazing with lots of support. I recommend the book previously mentioned plus Medikidz, explain breast cancer. It's a cartoon type of book, but has lots of facts & great for boys.

If i've learnt anything it's that we are only human, we are all different and no matter the need to do things, we must listen our bodies and go with what ever it's telling us and if that means swallowing pride and asking or accepting help then do so.

Sorry i've waffled on a bit!

Steph247
Member

Re: Newly diagnosed - worried about being HER2+

Ooooh I’ll look into the book thanks. Had half of my first cycle today and can’t bloody sleep 🤦🏽‍♀️. Got the dreaded Red Devil chemo tomorrow 🤮. Hope you are getting on ok Clare 😘 and all you other ladies 😍 xxxxxx

Jude1962
Member

Re: Newly diagnosed - worried about being HER2+

Hi Steph

it must be really tough for you ladies with younger children

I’ve heard about a book I think it’s called Mummy’s lump - it might be worth a look?

 

Good luck & thinking of you 

 

jude x

Steph247
Member

Re: Newly diagnosed - worried about being HER2+

Hi Clare, 

how are you feeling? 

I start chemo and targeted therapy on Monday / Tuesday. I’ve not been great and losing it quite a bit the last few days. 

Scans were all clear other than where they thought the cancer was. 

My boys are 15, 8, 4. 

The 15 year old we’ve been really open and honest with him and when he asks questions I tell him. He’s been amazing and if anything his behaviour and attitude has gone the way we wanted it 🤗

Our 8 and 4 year old we’ve kept simple I’ve got a nasty lump and need medicine to get rid of it that will make me poorly and lose my hair. The 4 year old just wants to know when my hair is going to die 🤣. Now our 8 year old he was always our worry and he’s really struggling which is breaking my heart. School are being amazing and are also getting a councillor in for him. 

Hope you are doing ok. None of this seems fair 😡. Xx

Jude1962
Member

Re: Newly diagnosed - worried about being HER2+

Good luck Clare, hope the chemo has gone ok x

Clare1970
Member

Re: Newly diagnosed - worried about being HER2+

Dear Jude - thanks for all this advice on the thread, I have only just dared to come back on, but am glad I did... I start chemo on Thursday so will stock up at the chemists and gird my loins!

 

All best, 

 

Clare. x

Clare1970
Member

Re: Newly diagnosed - worried about being HER2+

Hello Steph, thanks for messaging! It is an awful shock, isn't it... oddly I was dealing with it better in early January, when we found out, than now - the waiting has done for me I think. I have had a clear microbubbles test of my lymph nodes, but am still waiting for the bone and CT scans, so can't rest easy til then. Chemo and targeted therapy start on Thursday then surgery down the line. 

 

Do you mind me asking how old your boys are and whether you have told them? I have an 11 and 18 year old and can't bring myself to do it, particularly the younger one, though my older boy is about to go through A levels, so I worry about him too. We are very close and the only cancer they have experienced has been with terminally ill grandparents or a friend of mine who had a brain tumour and left two kids behind, so it's very loaded. I don't know how long I can string this out once chemo has begun, though. 

 

I hope you are alright - if my chemo starts before yours I'll tell you how it was. Oof. 

 

All the very best, 

 

Clare x 

Clare1970
Member

Re: Newly diagnosed - worried about being HER2+

Oh thank you! I'm very interested in both the cold cap and the fasting, if I'm woman enough to see them through! Would love to keep hair just so that my eleven year old isn't freaked out. Did you fast the day before and after - how did you find it? Am worried it might push any exhaustion over the edge. My oncologist didn't dismiss the idea, said there had been interesting studies, but recommended not doing it on the first round, so will maybe for for it on the second. 

 

All the very best, 

 

Clare. x. 

Clare1970
Member

Re: Newly diagnosed - worried about being HER2+

Hi Steph, I hope you have had your scans back - still waiting for my bone and CT, but chemo starts for me onThursday - seems hard to go into it not knowing the full picture! 

 

All the very best, 

 

Clare. x

Clare1970
Member

Re: Newly diagnosed - worried about being HER2+

Jo thanks so much for replying, that's lovely to hear... I am about to start chemo on Thursday, with Herceptin and Perjeta, yes - will keep a look out for Neratinib, no one has mentioned it so far. Someone I know called this period "scanxiety", which seems spot on to me - still waiting to hear about Bone and CT and imagining the worst when my guard is down!

 

All best, 

 

Clare. x

Clare1970
Member

Re: Newly diagnosed - worried about being HER2+

Dear pennylynne, thank you so much for this advice - I have been finding it really hard, which has suprised me as I've always thought of myself as a tough coookie. I think it's the chlidren that makes it all so emotional, I just can't bring myself to tell them. 

 

My oncologist was very keen that I try the chemo cap, so will give it a go - I'm having chemo and targeted therapy first, then surgery, so it may just be a lumpectomy if it shrinks sufficiently. 

 

I hope you are doing okay? x

Clare1970
Member

Re: Newly diagnosed - worried about being HER2+

Thank you Peggycat, I really appreciate that!

Clare1970
Member

Re: Newly diagnosed - worried about being HER2+

Thanks so much Lynda - all the very best!

Clare1970
Member

Re: Newly diagnosed - worried about being HER2+

Oh my goodness, I'm so sorry, I've only just come back on here and had no idea there would be so many replies - I frightened myself on Google and decided to stop looking online. Thank you all so much for your messages! I started out feeling very positive, almost superhuman, about all of this, but had a big emotional crash about two weeks ago and have been very shaky since. My microbubbles have showed no sign of cancer in the lymph nodes, which is good news, but am still anxiously waiting to hear the results of my Bone and CT scans (am of course convinced it has traveled!). I have my first chemo on Thursday and then on Friday and am losing sleep with fear of it, but am sure it will be better once I've takekn the plunge - it's the waiting that's awful, eh. I have two boys, 11 and 18, the latter about to take his A levels and I just can't bring myself to tell them (I seem to be doing a good job of looking normal, though don't feel it). I realise I may have to, very soon. I shall look on here more often, now, thanks again for all your advice. x

Jude1962
Member

Re: Newly diagnosed - worried about being HER2+

Hi Steph

Sorry to hear your diagnosis as well, it is a shock & it takes some processing especially when you’ve not felt ill previously 

 

Chemo is a tough gig but it is doable. However side effects vary greater between people & to a certain extent the first cycle is trial & error. For example the chemo staff will give you anti sickness medication which may work for you but if they don’t work, let your breast care nurse know & they will liaise with the chemo staff so next time they will try something else.

I suffered with heartburn & sickness first cycle so second cycle they changed the anti sickness & gave me tablets for heartburn. I found that by starting to take the heartburn tablets the day before chemo it helped a lot.  

Pre chemo I bought in over the counter products for constipation, Diarrhea & mouth ulcers. Get a digital thermometer to check your temp with as a high temp can be because of a low white blood count & you can develop neutropenic sepsis which needs a hospital stay & antibiotics 

Every cycle make a list of any symptoms that you have & grade them by severity, that way you remember to let the chemo staff know on your next cycle.

Try to drink plenty of fluids & eat whatever you fancy - your body tends to let you know what it can tolerate or what it needs

Weather permitting try to have a walk everyday, you’ll feel better for making the effort & having some fresh air

Lastly join the relevant chemo monthly thread forum on this site (in going through treatment) - it’s really helpful to discuss with people going through the process at the same time as you 

Good luck - you will get through it 

Jude x

 

Steph247
Member

Re: Newly diagnosed - worried about being HER2+

Hi clare

so yes I’m HER2 positive too. I’ve got stage 3 a 9cm tumour in my left breast and some lymph nodes also have it. 

Ive just had my mri and ct scan results and it’s no where else 🙌🏻. Got a heart scan and kidney function test on Monday then we should be starting treatment ASAP. It’s been a shock to me, hubby and family. I’m 35 no family history and got 3 most amazing boys. 

The majority of people I’ve spoken to have said the HER2 positive is better than the negative as the targeted treatment has a much better outcome. Not a journey I’d imagine I’d be on but I’m going to stay as healthy as possible. 

Many tips for reducing chemo side effects would be greatly appreciated.

Thanks

 

Stephxx

Jude1962
Member

Re: Newly diagnosed - worried about being HER2+

Hi Clare 

Sorry to hear your news but HER2+ is not as bad as it sounds

My diagnosis last June was grade 3, 2 x small tumours, stage 1, HER2+. I had a lumpectomy, sentinel lymph node removed, chemo & radiotherapy & my rads finished 24/12/18

Herceptin is a targeted therapy specifically designed to treat HER2+ which is good news. I’ve been having herceptin every 3 weeks since October & have had very few side effects 

Good luck with your treatment, I’ll keep everything crossed for you

Jude x

 

 

blueash
Community Champion

Re: Newly diagnosed - worried about being HER2+

Hello,

I had HER2 positive and am still here!

 

I used a cold cap and kept lots of hair plus I fasted before chemo to lessen the symptoms.

You will be alright xxx

Steph247
Member

Re: Newly diagnosed - worried about being HER2+

Hi
I too have just been diagnosed with HER2 it’s in my breast and lymph under my arm at the minute I’m praying the next scans I have show it’s nowhere else. Big hugs to you I’ll update you when i get my full results etc 😘
Jowoomot
Member

Re: Newly diagnosed - worried about being HER2+

Hi Clare

Firstly, the information you find online is invariably out of date, often by many years. It is true that before Herceptin the outcome was not as good as other types of breast cancer, but given the nature of HER2 it seems that they have been able to identify and develop new drugs to combat it. I was HER2+ and was diagnosed in 2016, so had Herceptin, chemo etc. Since then there is a new drug added to the treatment (if you are having chemo first) called Perjeta, this has only been around about a year, and combined with the Herceptin seems to be even better than Herceptin alone. There is also a new drug, Neratinib, which is currently at the end of trials and may be licensed soon, this is given after the Herceptin is finished - so there are always new options coming along, so please don't despair !

My sister in law had HER2+ breast cancer and was one of the ladies on the trial many years ago, she is still here and fighting fit.

Scans always come with anxiety, so you will be anxious for a while whilst they get everything in place for you, the reason why some people have scans and some don't don't always seem to follow guidelines but are dependant on many various factors.

 

Hope everything goes well for you

Jo x

 

pennylynne
Member

Re: Newly diagnosed - worried about being HER2+

Hi Claire How are you ? I was diagnosed with exactly the same in April last year. I had a mastectomy and then Chemo which I finished just before Christmas and am now on 3 weekly Herceptin and Letrozole tablets daily . I don't know what age you are but I'm not sure it matters that much the feelings are the same.
I found that the Chemo was not as bad as I expected and the mastectomy was OK too but it's how you feel like about yourself afterwards. Are you having reconstruction? I chose not too but if I had been younger it may have been a different choice
The best help I can give you is to spend time accepting the situation. I found being on my own to do that was best. Once you have accepted what is happening it becomes easier. Face each day as a new day and a different day. Try not to look ahead just deal with that day
You will have good days make the most of them and bad days then be kind to yourself and ask for and accept help. You do not need to be super woman. When you start to loose your hair unless you are having a cold cap which will be different instead of being upset each time you see more hair dropping out bite the bullet and shave it off and then you only have face it once. This is a very long reply so I hope I have helped in some way. These are ways that helped me but you may not feel that it will help you. They are offered only. I am doing well now . It was hard but you will get through it
No choice in this journey but how you travel it is down to you. big hug and be strong there is an end to it x
PeggyCat
Community Champion

Re: Newly diagnosed - worried about being HER2+

Hello Clare,

I wasn't HER2+ but I've met several people while going through treatment who are. In fact, about two years ago, I met a lovely women who was one of the first people to have Herceptin in the UK 12+ years ago. She had never had a recurrence in all that time and was the absolute life and soul of the event I was at. Herceptin is considered the gold standard drug for HER2+ breast cancer and the outcomes from treatment are extremely postive.

You are in good hands.

Ruth xx

LyndaN
Member

Re: Newly diagnosed - worried about being HER2+

I just want to wish you well and good luck.  I am awaiting a mastectomy on 21st Feb. Different outcomes to yourself but hope you get all the help and support along the way.

Lyn xxx

Clare1970
Member

Newly diagnosed - worried about being HER2+

Hello, 

 

I'm new to the forum. I found a lump in early December and was diagnosed with cancer in the left breast on January 2nd. Since then the tests have revealed it's 3.5cm, invasive ductal, grade 3, ER+ and, today, HER2+. My consultant was very upbeat about this and said Herceptin etc. would be very effective (I'll start with 5 rounds of chemo and targeted drugs, then surgery), but, looking online (I know, I know) it seems that my chances would have been better if it were HER2 negative? I'm due to have a full body MRI in the next two weeks, as well as lymph biospy, and am concerned they are doing the MRI because they think it may have spread already. Does anyone have any positive HER+ tales to tell!

 

Thank you, 

 

Clare.