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It keeps getting worse, I'm really struggling. (HER2+)

18 REPLIES 18
pamsshed
Member

Re: It keeps getting worse, I'm really struggling. (HER2+)

Good Luck and love to you CJW, you have obviously been through a lot already. Keep your strength up.

HER 2 is proving a persistent little sod for you. May the force to beat it be with you.

Love and hugs from 

Pam

 

pamsshed
Member

Re: It keeps getting worse, I'm really struggling. (HER2+)

Hi Pam,

I am so glad you are feeling more positive, I do know how hard it is to come to terms with cancer, waking up in the middle of the night thinking I've got cancer! How long have I got to live? Its not nice and very frightening. Good luck with your PET scan and getting the results. I do hope it is good news for you. Please keep in touch.

Love and hugs to you,

Pam

Dexy
Member

Re: It keeps getting worse, I'm really struggling. (HER2+)

Hi Pam 

Just wanted to say I was so pleased to read that your scan results were fine and you can hopefully put that worry to bed and focus on next steps. 

Very best wishes for your treatment and don’t forget you have friends on here ready to listen whenever you need us.

One step at a time and you’ll get there. 

Big hugs xx

Pam3235
Member

Re: It keeps getting worse, I'm really struggling. (HER2+)

Hi Pam, 

Thank you so much for replying. It is so reassuring to hear positive stories, it is really helpful and does give me hope and adds some balance. 
I have calmed down a bit following results from my ct scan as they don’t show any spread to other organs. A lymph node is slightly enlarged, but as I had cellulitis at the time around my mastectomy wound they feel it may be that, but to be certain I am booked for a PET scan which is this morning. There were cancer cells in a removed lymph node, so I am advised I will definitely be looking at chemo and radiotherapy amongst other things, but I have got my head around that bit now. I had convinced myself I was riddled with cancer and was going to die very soon. It sounds silly, but when waiting you go there..... as I am sure you will know. So I suppose acceptance has arrived for me. Without doubt hearing some positive stories from people really gives me a boost, I just feel like I want to crack on with the treatment now and get through this. 
I really appreciate your support

kind regards

Pam 

pamsshed
Member

Re: It keeps getting worse, I'm really struggling. (HER2+)

Good luck and hugs to you. I am HER 2 positive too. It came as a shock. I have also had a mastectomy. I am told that I won’t need further treatment unless it comes back as I am stage 2. I know that so far I am lucky and hope my luck lasts, but if it does come back I would have further treatment to hopefully increase my chances of seeing the Grandchildren grow up. Some people get very good results with treatment. Try not to panic, discuss it with your Consultant and breast care nurse, you can get help, advice and counselling from your treatment centre, Ring the Nurses on the Breast Cancer Now Help line, I did, I found talking to them really helpful and they certainly helped ease my panic by explaining everything to me. Coffee mornings/afternoons will be starting up again and you will be able to talk to other people with the same diagnosis. Lockdown has prevented the normal safety valve of being able to talk to other people about it. A problem shared is a problem halved, you will be surprised the number of people who have recovered and lived a full life after a breast cancer diagnosis. Don’t give up.

Best wishes to you

 Pam

Dexy
Member

Re: It keeps getting worse, I'm really struggling. (HER2+)

Hi Pam3235

You’ve captured exactly how I felt and can still feel. From my own perspective I’ve had to accept that I can’t do one single thing straight away to make myself feel better or take this away. I’ve taken up Headspace meditation which I would never have looked into before and it’s really helped me to address some of the noise in my head. I’m writing a journal every day. You can get them online with pre filled headings such as sleep, goals, what went well today etc. Again not me usually but I have found writing all my feelings down does help. (There’s quite a few swear words in there as well!) I also walk every day. Physical stuff permitting it can help you to have a bit of me time away from the thoughts even if at first you don’t feel like it. All just possible suggestions. 😊

Please be kind to yourself you’ve had a massive shock and as someone who also went from a minor op to a mastectomy I completely understand that you are scared and wondering how you ended up here.

I am certainly not positive all the time and in fact this week alone have had a couple of rubbish days. But, with time the odd better bit is creeping in which I hold onto. 
I’m sending you a big big hug for Friday. I hope it is better news than you are thinking and although you have this time of treatment ahead it will finish, so please hold on and keep leaning on your family and friends.

Your comment about the flowers made me smile! I wish every day I’d never had this news but I’ve also made connections back with friends I’d lost touch with and talking on this forum has helped enormously as you know you’re not struggling alone.

Take care and very best wishes for Friday xx

 

Pam3235
Member

Re: It keeps getting worse, I'm really struggling. (HER2+)

Hi Dexy, thank you so much for your reply, it is nice to know the people here understand. I think it floored me a bit seeing how positive everyone on here seemed to be when I just couldn't (probably still can't) muster any positivity up from anywhere.

I have my CT scan on Friday, and of course I am terrified that it will say I am in stage 4 and it has spread to other parts of my body. It is just such a far cry from my initial DCIS diagnosis, only a few weeks ago, which looking at it now, I would be so happy had it stayed a DCIS diagnosis. I am terrified of Chemo and being ill and losing my hair (who isn't). It's so hard to listen to my friends and family talking about their plans for even trivial things, that I can no longer plan myself. I hope that, like a lot of the people on here, I will start to feel a bit better about things at some point. It's almost like a grieving for a life I had, that will never ever return again. I feel bereft, angry, bitter and desperately sad. I've twisted my knee, my arm mobility is still very reduced and just for good measure my wound is still swollen, sore and has cellulitis around it now!!!! That's all before any Chemo, Herceptin and rads. 🙄🙄

I have just made myself laugh at how ridiculously negative I am........ 😄😄

Your comment and those of others dealing with a lot worse than I am at the moment, fill me with admiration of you and inspiration and a little bit of hope that I will be able to find a better headspace soon. 

I will finish on naming a positive from all this (I managed to find one) - I am really enjoying much more regular contact now with my remaining family (2 brothers), one visited yesterday who I hadn't seen for over 2 years and we all talk every week now (instead of Xmas and birthdays) ☺️☺️☺️

Also, I have been kindly gifted more flowers in the last two months than in all my life 😄☺️ - must be serious 😂😂😂

Dexy
Member

Re: It keeps getting worse, I'm really struggling. (HER2+)

Hi Pam

I felt and can still feel exactly the same as you. My diagnosis caught me off guard as I went through several months of operations and meetings until it was diagnosed and I too went from DCIS to a mastectomy and am now half way through radiotherapy.

It is without doubt the scariest time and you are probably getting lots of information and lots of things being set up for you and for my part I watched it all almost from the sidelines not believing my life was going in this direction. I was also most definitely not positive and couldn’t see how that was manageable. I am changing that slowly and bad days still creep in but it’s perfectly understandable to feel like that. 

I had some lovely replies from this forum and firstly I would say take a big breath and be kind to yourself. You’ve had a huge shock. 
I took questions written down to the appointments so I could try and get the answers to the aspects that were really worrying my mind. 
Family and friends will want to support and I talked (and cried) a lot to them. Don’t keep it all in. It’s also ok to be really hacked off at the diagnosis and what it’s doing to your day to day and longer term plans! But they’re not lost, just paused.

I hope your next meeting and scan go really well and the news is better than you’re thinking (I had lots of very negative scenarios which weren’t the actual case)

I know it’s a rubbish time but you’re already making steps down the road and people in this forum are here for you.

As the mist clears a bit I hope you can access all the various support available to you which can help you feel supported.

Sending a big virtual hug and here for you. 
Take care x

Cjw
Member

Re: It keeps getting worse, I'm really struggling. (HER2+)

Just logging in to this thread to see how you are all getting on with getting diagnosis treatment etc,

Got my results yesterday two lung tumours with secondary breast cancer removed,luckily the larger one had responded to my hormone treatment anastrazole and smaller one which wasn't seen on the scan and only found during the surgery had some sbc cells as well, onco registrar says I can make my own choice whether to start  targetted therapy he personally thinks that the side effects on my blood effect on white cells etc outweighs the need to start taking them at this stage, I am inclined to agree with him but I have another appointment in 6 weeks, my consultant is off at the moment so they will discuss me when he gets back ! 

So my plan currently is continue on anastrazole and 4 monthly scans but Dr says I am high risk that micro cells are in my body, but I don't think I will start ibrance unless anything else comes up on scans as it sounds like I would be permanently at risk of low white cells and anaemia, low platelets and I want to avoid this for as long as I can as I have now had cancer three times  over the last 40 years intensive chemo twice and although it is called targetted therapy I personally feel it is chemo by another name and there would be no end point as it is permanent treatment at least with chemo it is a course of treatment over a set time period. I just want to get over the surgery and enjoy the time I have without intensive treatment cos I know I will probably have to start it again in the future 

Pam3235
Member

Re: It keeps getting worse, I'm really struggling. (HER2+)

Hi Donna, 

Thank you, I will look into Maggies website, a friend in Scotland has recommended it to me too. Will see where my nearest is 🥰🙏🥰

Donnat
Member

Re: It keeps getting worse, I'm really struggling. (HER2+)

Hi pam 3235

I understand how you feel as I am very similar in my ways. Too independent for own good. Have you popped into maggies. They open to pop in and chat, lovely gardens to chill as well. It's near christies. I went for first time yesterday as I had a bone scan 

Pam3235
Member

Re: It keeps getting worse, I'm really struggling. (HER2+)

Hi Donna, 

I don't live alone, I have a husband and an 18 year old son with Aspergers. A bit tricky as I am fiercely independent and hate anyone to think I need them for anything. I don't like to be seen as vulnerable, I am emotionally a bit of a cold fish I am afraid. Product of my upbringing. I have been offered counselling but it is currently still over the phone, which is of no use to me as I would have no privacy to talk freely as there is always someone home. So not an option for me. I hope you have some support. Take care 

Donnat
Member

Re: It keeps getting worse, I'm really struggling. (HER2+)

Jan that is an amazing piece of truth, positivity and resistance. Your story has inspired me.

Donnat
Member

Re: It keeps getting worse, I'm really struggling. (HER2+)

Hey I'm 54 a Foster parent to 13 and 15yr old girls long term. A daughter and 2 grandkids 13 and 16. Oct my nipple sunk in by Feb had right mastectomy  and 10 lymph nodes removed. Told had rare cancer lobular  and in my spine. Prob got 3 yr. I've read lots people not ill with chemo  etc and got to just hope trails. Every day I struggle with thoughts but I try to put aside. Do u live alone

Pam3235
Member

Re: It keeps getting worse, I'm really struggling. (HER2+)

Hi Jaybro,

Thank you so much for your reply, as said in my previous reply I spent over an hour with the breast nurse this afternoon which was very helpful. 

It is reassuring to know I am not alone in falling apart, on receiving the dreaded news. I felt I could cope with mastectomy and even a bit of radiotherapy, but the dreaded Chemo terrified me. I have more or less now accepted now that it is something I will have to go through.

The breast nurse put a bit of balance back - I think I was so scared that I had gone into fight or flight mode. I am still fearful and need to find my way of dealing with this, but I appreciate your words of advice and maybe I need to take the opportunity that the next 12 months brings me to shift a bit of weight and get back to running which I had taken up in my 50's but had dropped off the last 12 months. 

Thank you for your reply and your positivity - I am not feeling as completely hopeless as I was this morning, so I just need to await my CT scan and hope that it doesn't bring any  more nasty surprises.

Thank you very much appreciated 

Pam3235
Member

Re: It keeps getting worse, I'm really struggling. (HER2+)

Thank you so much for your reply, and for your very good advice and words of support, I was beginning to think there was something wrong with me that I just wanted to crumble, crawl away and disappear. 

I have been to see the breast nurse this afternoon with my list of questions. She was brilliant and spent over an hour with me. It's amazing how having more information and a bit of balance helps. 

I should get my scan in the next week or two then within a week appt with oncologist to go through the treatment plan. The nurse was honest and said I have treatment Up to 12 months possibly ahead of me and that I will at some stage lose my hair. 

Thanks again for replying, I appreciate it and wish you the very best of luck with your lung nodules results.

Jaybro
Member

Re: It keeps getting worse, I'm really struggling. (HER2+)

Hi Pam

First I’m so sorry this is happening to you. I am completely behind you with regard to feeling anything but a cancer warrior. Why the hell should we be. Every time I hear Stand Up To Cancer, I mutter “or flop like a jellyfish.”

I’m guilty of being relentlessly positive but I wasn’t at the time. I was a wreck. It wasn’t the cancer that terrified me but the thought of the treatments. And they wiped me out. But the fact is, a lot of women are not wiped out. They experience a few days, maybe a week in each cycle where they feel like sh** but recover and continue with their daily lives, even working. I envy these women but I don’t remonstrate with myself for being a wimp. It’s how the dice tumble. You won’t know till you try it.

Please don’t write off your life. But also, please don’t assume the horror stories you read in the media are necessarily applicable to you. People come to these forums because they need comfort and maybe help. It certainly helps to know you’re not alone as you navigate Cancerworld. But there are millions of women who have never needed to come on here, aren’t they? My mum had breast cancer twice (in her 40s and 60s). The first time, she only told me and my dad; my brother who was living with them at the time didn’t even know she had cancer, she just said she’d had a bit of surgery, Second time round, she needed help getting to radiotherapy but she was never ill. It is so unfair when I think that I was like a zombie most of the time!

The fact is, you have cancer and there’s nothing you can change about that. You haven’t got your full test results back yet, not do you have a treatment plan but, yes, not having treatment is an option. But my jaw dropped as I read you writing yourself off at 60. You may well have another 30+ years left, a third of your life. I think fear and desperation drive these thoughts. One thing I learned is that your emotional health is a huge factor in what’s to come so why not start working on that while you wait. People do all sorts - running, baking, meditation, yoga, wild swimming... whatever makes you feel in touch with good and positive emotions. Me, I turned to YouTube videos that got me sleeping, took the edge off my anxiety and eventually established a healthier pattern of mental health. There are online resources specifically for breast cancer too - Maggie’s, The Haven (till the end of June, sadly), I believe there are resources here and I can vouch for the nurses telephone service - so completely reassuring. In fact, I’d say start by ringing them, offload your frustrations to a completely understanding and sympathetic expert. It’s worth it.

I wish you all the best and hope you can look beyond the treatment phase, overcome those frustrations and join the positive group, none of whose were positive at your stage!!

Take care,

Jan x

Cjw
Member

Re: It keeps getting worse, I'm really struggling. (HER2+)

I can sympathise with how you are feeling ! Its definitely OK not to be a cancer warrior !! 

I first had breast cancer 20 years ago left lumpectomy and full node clearance, with chemo for 8 months just in case there were any stray cells radiotherapy for same reason. Fast forward 20 years to August 2020

Had left mastectomy and removal of a grade two cancerous area on right breast, currently recovering from removal of a lung nodule for which I am awaiting the result! 

It is very easy to let all your thoughts run away with you and the thought of months of ill health I am currently going through a decision making process too. I am awaiting the result of the lung nodule next week and will then have to make treatment plan decisions,waiting for results is the worst time. all I can say is that you may be offered radiotherapy or chemo if there is just lymph node involvement they are probably doing the ct scan to check the rest of your body to make sure there hasn't been a spread elsewhere.

Obviously no one can pre empt what the tests are going to show but all I can say it is YOUR decision not your treatment team or your family  you should never feel that you are pressured in to any treatment it is absolutely OK to say you don't want treatment !!  But if it simply a case of a course of radiotherapy for instance then it maybe something you want to consider, also treatment can very often be fitted in around holidays etc, do what is right for you!! Hope this helps and good luck with the scan results  

Pam3235
Member

It keeps getting worse, I'm really struggling. (HER2+)

How does everyone get to sound so positive?

In the space of 2.5 months I have gone from nothing - then a mammogram call back - then biopsies including from a lymph node  - then diagnosed DCIS from biopsies and lymph mode clear, but no tumours visible  - then full left mastectomy with lymph node taken - and now (yesterday) histology results appear to be full blown her2+ cancer cells in lymph node taken, so awaiting CT scan not even sure what for, I guess to see if I am riddled with the stuff.

I am no cancer warrior, because I am in bits. I am 59 in August, and it appears I can write off the next 12 months of my life to horrible treatments that I don't want to have. (Having just written off 12 months to covid lockdown - which incidentally meant my mammogram was 5 months late!!!!!!! - so I can't help think this would not be so devastating had it been on time)

I have so much I want to do this summer, including a one off promised holiday taking my daughter and grandkids away which was cancelled last year to covid.

I just want to go to my bedroom and not surface for 12 months. I am scared of my next visit for (CT) results because if it follows current pattern it will be more very bad  news.

The only people I have ever met with breast cancer, were brave, but they endured horrible treatment only for it to come back and take them within a couple of years of first diagnosis.

As you can see, I am feeling completely hopeless, and my immediate thought process is do I want 12 months of hellish treatment, (by which time I will be clocking on for 60) only for it to come back a few months later, or do I just sack it all and enjoy what time I have left. That is of course a decision for when I find out if I am riddled with cancer.

Fortunately my kids are grown up, so nobody 'needs' me as such.

Sorry for such a depressing post, am I the only cancer 'wimp' not warrior out there. Where do you find hope, is there anyone at all having had  a similar diagnosis - treatments mentioned to me, but not confirmed were Chemo, Radiotherapy and Herceptin, but to be decided after my CT scan and results.

I salute you brave ladies out there.