HER2+ and need some buddies

How big was your lump? If you dont mind me asking… tbf you probabaly have told me before but i dont come on here all the time and i honestly forget who i have spoken to :see_no_evil:
Its great you had total response! I have a feel around at mine and i dont think i can even feel it… if it is what im feeling. My nurse told me the breast tissue can feel like a bunch of grapes and to be honest thats all i can feel now. I just been asking about the chemo because a friend i have made she missed her last one but then again she struggled all way through so i think they decided not to bother with the 6th round as they told her it did its job anyway.
My nodes was clear after the third round i had :blush: which made me extremely happy! The nodes was bothering me more than anything else.

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@jeml Yes it was @salbert that started us all slapping benches in the absence of a bell to ring. Great idea.
My tumour was roughly 4 x 6cm, but i could only feel part of it, so must have been brewing underneath for a while before i noticed. It did go down dramatically even after first chemo. My last few treatments were of a reduced dose because of side effects. I feel so relieved and lucky there was no node involement. I shall be trying to wean myself of cake soon. I certainly dont want to put the weight back on that i lost through treatment.

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Ahhh i see! I thought i had never heard of that before haha.
I only go to a little clinic and they dont have a bell so i might have to slap a bench :face_with_hand_over_mouth:
Had my booby mri today my consultant wanted it asap so they can plan surgery so will see what they all say even though i made my mind up already and i want it off! Bye :wave:
Yes i noticed a massive difference after my first chemo too all my swelling went down and it felt normal squishy boob again. And i had node involvement from the start but apparently after the third round my dr said they gone back to normal :blush: what a relief!

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@jeml interesting what you said about foods that feed her2 …typically id been vegetarian for donkeys years and id been eating healthier for the last year due to increased cholesterol… but Id been under immense stress with dad being ill then dying and stress certainly isn’t good for us .
I have gone down the route of researching foods that fight her2 but I think in all honesty all we can do is look after ourselves and keep active and eat well x

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Its all we can do… i mean they say this can trigger it and that can trigger it. But how many people binge drink when they are young etc? I even read having babies after 30 could be a cause and i was 31 when i had mine… but then again how many women wait till they are older now… who bloody knows hey.x

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@jeml you just don’t know really , plenty of people look after themselves , eat healthy and exercise and still get cancer … sometimes I think it’s just the luck of the draw putting genetic factors etc aside x

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Just wanted to let you know that sugar feeding cancer is not strictly true, so you don’t need to cut it out completely (things in moderation is fine). Here is a resource that may help explain (I’ve seen it from numerous trusted resources but this one sprung to mind and her podcasts are good):

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@belle1 Ooh I watched that podcast … I’ve had a lot of people saying sugar feeds it etc but my mothers motto as a cancer survivor is … everything in moderation x I don’t know if anyone has watched the fitness chef on Instagram but he kicks out all the food myths and he’s hilarious too x

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Yeah definitely. I tend to look at official sources and people like Liz O’Riordan (who I found through Breast Cancer Now) or speakers live guests so thought I’d share as I think it’s unfair when people tell us and make us think that sugar feeds cancer (and the other myths), so I didn’t want anyone being more worried or restricting themselves more than they should be about something. Life is hard enough to adjust to during and after cancer without adding anything else unnecessary into the mix!

I should add that I’m a healthy person and don’t just eat sugary things lol …. I eat well and cook from scratch most of the time but I also will have a treat now and again. As you say…. Moderation is key :grin:

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@belle1 Thanks so much for posting that. I’m going to listen to that when I cook another green health pond water rabbit food stew this evening and hopefully I will feel heaps better about cooking up a burger and chips dinner tomorrow! Moderation is definitely the way forward, isn’t it. I was someone who partied like it was 1999 but for about 30 years! I also had my first and only child at 38 and where tick boxes for breast cancer is concerned, I checked most of them. I don’t regret anything as I had a brilliant time. I used to be an actress and go on tour for months at a time and literally party every night. Although I did go to a party yesterday actually and after my first rum punch I sang and danced for hours. Absolutely no hangover today, just a rather sore back. It was great to party again after not having done so this year so no, no regrets. I am just going to do everything in my power now to give myself the best shot at living to old bones. (Which I certainly feel like I’ve got today!)

@pennyp Let us know what you think of the Moving Forward course. I’m glad you mentioned that you don’t think your insides have completely recovered as I don’t feel like mine have either. I just got the poo test sent to me as I’ve turned 54 and that came back clear :partying_face: so I can only think that it’s the treatment that still has me bolting for the lav at the drop of a hat! Most inconvenient when you’re dogwalking, I can tell you. Courgette and lime cake sounds illegal.

@arty1 The Oracle is a name I have used for @naughty_boob in the past too! She’s amazing, isn’t she. She was also one of the first people that answered me on here and held my hand through those scary early months. I feel blessed that she came into my life. Wonderful woman. I’m glad my posts are upbeat. That’s really nice to hear. Although I did hear the expression ‘toxic positivity’ lately so I looked it up and I’m trying to ensure that I am never guilty of that. I always want people to feel heard on here when times are tough and they need to let it out. I am definitely a positive person but I think it’s because I can’t bear to feel bad so I do all I can not to. I’m very selfish really! :rofl:

@jeml I videoed my bench slapping and posted it on FB and it was lovely as lots of friends also slapped benches with me/for me and posted their pics and vids too. Please post a pic of your bench slap!

I was one of a dastardly pair that got the church organist very drunk at the party yesterday and have just remembered that we filled his pockets with Swedish meatballs. The other person responsible for this is a Senior GP! :rofl:

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Talking about what feeds cancer, Liz O’Riordan and many other reputable sources have said that there is never one cause for the cancer. Most of the time we don’t know. I had two children at 26 and 28 and breast fed them both, one for 6 months and the other until they were 1 years old. Both factors should have protected me from breast cancer. I drank but not heavily, I’m such a light weight, 3 small glasses of wine and I’m going to sleep! In the 4 months before I found my lump I’d changed my diet trying to include 30 different fruits and vegetables in my diet, eating at least 2 vegetarian/vegan meals a week. Most meals are cooked from scratch, occasional ready meal/pizza/takeaway etc. so overall relatively healthy. I gave up drinking all when it tasted horrible after my second weekly chemo and haven’t had a drop since. I’ve swapped to non alcoholic alternatives and I don’t miss it.

I think we just need to accept we’ll never know.

Like @salbert I had my first poo test this year and it was negative and today had the delights of cervical smear, never the most comfortable. Being on Letrozole which removes all my oestrogen and vaginal oestrogen to compensate for a couple of months, I had hoped it wasn’t too bad, but it was horrible. The nurse who had also had bc was wonderful and did it really slowly with lots of lubricant, said it looked sore. I will be feeding back to my menopause doctor in a few weeks as it’s a phone call and she won’t be able to take a look.

Hope everyone has a good week. :smiling_face_with_three_hearts:

@salbert isn’t it great though to look back on your life and think … wow that was a ride !!
It sounds like you’ve had an amazing life and career and here’s to many more years of partying
I was a young mum , had my daughter at 18 two weeks after finishing my a levels :see_no_evil: another baby at 21 and I was studying for my degree through the night and living on two hours sleep a night … no idea how I did it … I still had fun though … took my kids to festivals etc . When I met my husband after that relations broke down , we had three more children so I had my last at 38 … I was unimpressed when they wrote “elderly multigravida” on my notes .
@naughty_boob I think you can be as clean living as you like but if cancer is going to visit , it will , it really does seem to be the luck of the draw x
Are the poo tests FIT tests ?

As far as toxic positivity is concerned … it’s more those well meaning things from people who have never been through cancer … things like “oh breast cancer is a good cancer to get “ or “oh at least you’ll get some new boobs on the nhs “
I know they are trying to be nice but it’s just … uggh .

@belle1 cancer treatment definitely isn’t the time for a diet :see_no_evil: I think it’s a bonus if anything tastes good so just eat it (even if it’s cake :rofl:) x

I went for a pre chemo dental check up today … all good just a clean needed on weds , then I’m off to Bristol to collect my dad’s ashes .
The buyer of my father’s house is being a pita , it sold by auction and it needs renovating yet he’s questioning things that were perfectly obvious and keeps asking for asking to the house for stuff . I joked that as my dad loved his house and didn’t want to leave , I should bury his ashes in the cellar so he can haunt the place :rofl:

As I’m on weekly chemo I’m not sure how I’m going to feel especially over Christmas so I’m putting the tree up on the 20th November ! Crazy I know but I want to do it when I’m feeling well as my 14 year old wants to help .

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It seems that several of us have been striving to eat healthily @naughty_boob @belle1 @arty1, i mostly cook from scratch and eat plenty of veg and fibre. As someone said , sorry not sure who, there are msny factors that contribute towards breast cancer, so i suppose all we can do is try our best to live a healthy lifestyle without worrying too much if we hsve the occasionsl less healthy option. I did go down the rabbit hole of researching which foods promote Her2 cancers, but even that had conflicting information. So i’m not going to eliminate anything from my diet, apart from trying to avoid too many ultra-processed foods, but try to eat a wide variety of plant based foods with a little meat and some fish. Sounds easy!

@salbert yes i wish i knew what it is that upsets my tummy still and sends me rushing to the loo, is it something specific, too much food at once, too much fibre, dairy? I just dont know. Its not all the time. Perhaps i need to keep a food diary.

The first session of the moving forward course was interesting. There was a wide range of ages and people from quite a wide area as well. It was just nice to meet people f2f who have been through all this. I think the time to chat was just as important as the more structured contributions. Not everyone spoke about their experiences, some people were quiet and some more forthright, which is fine. I piped up a couple of times and also sung the praises of this forum. Oh and we had to pick a card with a picture that resonated with us at this time and i chose a picture of a cake!
Amazingly i met a friend of a friend there and another lady i recognised who works where i used to. However, i think next week there might be a few people discussing their problems with Tamoxifen and letrozole, which is not applicable to me, but i’m sure there will be other topics of discussion as well.

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@arty1 we also had a discussion on the moving forward course about the things people say - ‘you will be fine’ ‘it will all be over in no time’ or the pity looks and the even odder intrusive questions some people who even barely know you think they can ask i.e. did you keep your nipple? Oh and the stories about their aunty’s friend’s neighbour who had no problems at all and climbed kilamanjaro six months later (i made that up, but you know what i mean). At least here we can talk about our real feelings if we want to

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@pennyp oh that made me laugh about mountain climb :rofl: I know what you mean !
Yes I’ve had people ask me if I kept my nipple … :scream: I’m like “what does it matter to you !”

Hoping the moving forward course is helpful . I’ve a long way to go before I’m there but once everything is finished … people expect you just crack on as if nothing happened .

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Not sure what the poo test was called. It’s was the NHS bowel screening test that comes through the post.

@pennyp so pleased the Moving Forward course was helpful and yes I agree the informal chats are just as important as the structured. On my course the facilitator said it used to be much more structured and work through the booklet but after feedback they changed it. I must admit I got the booklet and it went in my bag with all my cancer stuff. For me meeting others face to face who get it and shared their experiences was the most valuable.

:smiling_face_with_three_hearts:

Afternoon all!

Well, I listened to the Liz O’Riordan podcast that @belle1 posted last night and it was really interesting. Thanks Belle. Good to know that I’m on the right track and that moderation is key. Love that they kick out the sugar myth. We can have those treats but they should be just that. I may pluck up the courage to do the 5 and 2 diet, but all in good time…

My geneticist said that a large percentage of breast cancer is just plain bad luck.

@naughty_boob Sorry to hear you had to endure the delights of a cervical smear. I’ve yet to experience that post-menopausal fun. However, I recently had my Mirena coil removed and that certainly made me wince!

Yes @arty1 I’m absolutely glad to have had the experiences that I did. I got to spend the larger part of a year with Paul O’Grady on tour with him and then doing his TV show which was one of the best years of my life. He said it was like being the madam of an unruly whore house! I’ve had so many amazing times that it makes all the temping jobs and lean times in between the acting jobs worth it. Looking back I can hardly believe some of the things I got to do and those memories can never be taken away. I’d pick experiences over possessions every day of the week.

I have to take my hat off to you. 5 times in fact!! How anyone manages to bring up 5 children is absolutely beyond me. You are made of stern stuff. As I only had one child at 38, I very well remember being told I was a geriatric mother. The damn cheek!

Thanks for giving me the lowdown on toxic positivity. That makes sense. The ‘Stay positive’ phrase that gets parroted at you when the news gets out about your diagnosis, is just one of those meaningless phrases. You feel like shouting ‘HOW?? HOW DO YOU SUGGEST I DO THAT, THEN?’ Although that wasn’t as bad as the 3 separate individuals that pushed and pushed me to see my balding pate and then all winced when I pulled off my headscarf. I felt like saying ‘I didn’t ask you to beg me to see my hair loss’. Incredible.

Sorry to hear you have a PITA buying your Dad’s house. Just what you need right now. I hope your Dad decides to haunt him anyway and that you can put his ashes somewhere lovely and close to you.

Go for it with the Christmas tree on 20th December. I shall be closely following you on Sunday 1st December when I will also be watching Elf with my son. Something of a tradition.

It was the FIT test which sounds like a very different test than what it actually is. Still, good to know mine was fit!

@pennyp I have my Moving Forward dates now - 13th and 20th November. It sounds really good. I’m going to make sure I get in there first with the cake picture too.

Ewww… I have a work conference call now. Will this fun never end?

XX

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Hi all, just wanting to cry to you all as I’m freaking out and so so scared. I’ve just felt a lump under my armpit so called the breast care nurses who confirmed my MRI results were in and it picked up the swollen node and also another 6mm mass that needs biopsy. This seems to be getting worse with every scan/appointment, and all the while it’s delaying treatment and clearly spreading, I’m literally petrified :pensive::pensive::pensive:

Hi @scaredmum1 - I’m going to copy and paste something that @Kay0987 said to me way back at the start when I was exactly where you are now.

This club sucks loads but we do have the best members. So welcome. I’m so sorry that every time you’ve gotten news it’s been worse than what you’ve expected. It happens but it always sucks when it does. So in saying that realize it’s not unusual. It’s fairly common for IDC to hide among DCIS cells and not to know it until surgical pathology comes back. And considering you’ve got HER2+ receptors, it’s also not particularly surprising you’ve got lymph node involvement. It is an aggressive breast cancer that normally moves quick. BUT, and this is important, in breast cancer world the quicker the cancer moves the quicker it falls in treatment. Chemo works great on those SOB’s and Herceptin has been a game changer. No this isn’t going to be fun and you’re going to feel worse before you feel better but the chances are highly in your favor that this treatment is going to work fine.
Also, this is by far the worst of it…the waiting. But it’s only one more clearance and then treatment will start and once that happens a sense of control comes back. And with it, a needed sense of peace. So know this horrible anxiety and feeling does pass and remember you’re almost through the information gathering time.

I know exactly how terrified you feel right now because I felt like that too. I was also petrified that all the time I was waiting for another op and another op, it was spreading. We have all felt that fear. I was told by my consultant that although HER2+ cancer moves faster than other breast cancers, it doesn’t move that fast and that it is important to get the full picture so that it is treated properly.

Many, many of us have had lymph node involvement but it’s still primary breast cancer. I wish I could give you a big hug right now. We all know what it’s like to be frozen with fear but you are getting there. Lots of women on here also had it in more than one place. It’s not what you want to hear but it’s not unusual. Do you have any dates for the next appointments yet? Also have you been able to speak to your GP yet? It would be good if you could have some help to get through this time.

Lots of love,

Salbert
xx

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@scaredmum1 i know it’s hard and that everything seems to find something else, it happened to me finding another primary tumour in my other boob. It was horrendous at the time but I was assured that the time delay with extra tests just meant they could get the treatment plan right first time. If they start without all the facts the plan could be wrong and need changing which brings up many emotions. I’m not saying things don’t change, they can do, especially with chemo.

You are doing great and your emotions are totally valid.

If you want to talk anything through please call the BCN nurses

  • Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.

:smiling_face_with_three_hearts:

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