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Worried all over again

22 REPLIES 22
Pandabear
Member

Re: Worried all over again

Roast pork, thank you for sharing your journey, although I'm sorry to hear about the recurrence.  You are so positive, and I for one need to heed that for the future. Take care and big hugs X ❤️

Pandabear
Member

Re: Worried all over again

Amy, fantastic news. I hope you have something to celebrate with. 

Big hugsxxxxxx 

Pesto
Member

Re: Worried all over again

Thank you and Amy

 

Sometimes it is easier to be positive when putting it down " E " paper.  We are all in the same boat on a rollercoaster ride and must have faith in all our practitioners, they are all doing a remarkable job.  From the person that gives us a cuppa in hospital with a lovely smile all the way through to the oncologists and everyone in between.  There are far too many to mention but they know who they and without them and  their smiles, their virtual hugs, phone calls, advise, the wonderful food given to us ( in the form of chemo ) whose diet is our cancer, the receptionists, the secretaries and even my dentist who went above and beyond , they are  there just for us.  I know the extra  time I have  had so far is all down to them.

 

Hugs all-round 

Evie-S
Community Champion

Re: Worried all over again

Roast pork - I’d like to echo Amy’s comments about your post and thank you for sharing such positive thoughts and attitude. I am so sorry to read about the recurrence, and wish you all the best with your treatment - I hope the meds continue to “eat the naughty bits”, and the mets decrease. We can all learn a lot from you. Love and hugs, Evie xx

Amy1988
Member

Re: Worried all over again

Hi roast pork. Thanks for sharing your story but I'm so sorry what you have been through. I'm really glad you've managed to still live and enjoy your life. That's something that I need to learn to do now and not dwell on 'what ifs', I'm terrible for doing that. Your attitude towards this sounds great and I'm sure you won't let the cancer win! I really hope you continue to have good results from you treatment. Don't worry the long post, I do the same lol

Evie-S
Community Champion

Re: Worried all over again

Amy - that’s really wonderful news, so glad to read that 😊. You have not at all been a nightmare, this is what the forum is here for. Sending you big hugs and best wishes for the next chemo and radiotherapy. 🤗 Evie xx

Kitkat23
Member

Re: Worried all over again

Hi Amy that’s fantastic news! I have been around from the July 2020 chemo thread so seen your posts over the months and know you have had a few scares since diagnosis.  
hope all goes well with your new chemo x

Pesto
Member

Re: Worried all over again

Hi Amy.

 

I am a newbie so not very good at this yet, but If I may I would like to share my journey with you.

 

In 1999 the year after my second marriage I was diagnosed with DCIS.  The first consultant told me all is great, nothing to worry about go home and enjoy your life. For some reason I was not convinced and had a second opinion.  Glad I did in a strange way.  Had a biopsy and it was confirmed.  It was too an early stage for any mammogram to detect.  I was not given any option part from a full right hand side mast.  I had reconstruction immediately and apart from a few problems with my arm felt great.  No chemo, and told by my surgeon everything fine, go home enjoy life with the caveat no one an ever be given the all clear on cancer but it just as possible you could get run over by a bus.  Back to last year, thought I had covid in january no tests available as it in theory was not in the UK, just had flu.  In bed for 6 weeks, breathing the main problem.  Recovered but still got breathless very quickly.  Had covid test, negative but they said the breathing could be a result of the illness in January.  Now the good bit....  went on a safe covid friendly holiday to Greet in the very short window we had.  Brilliant but breathless.  Walking back through Heathrow I didn't think I would make it.

 

Now the present day...  saw GP chest X ray immediately on the following day.  I hadn't made it home before I got my news.  I had in the one day been x rayed, scanned, blood tests and then chest clinic.  A lovely nurse had given me a coffee after my x ray and knew the news would be bad.  Chest clinic confirmed the worst....  cancer again.  And in many places,  Spoke to my old breast surgeon the following week (who is world renowned expert ) if only for advice I could give to stop others being where I am now.  She said years ago I more chance of knocked down by a bus than it re occurring and we both laughed at the memory, but she is right  I am unlucky.  Surgery removes almost every piece of cancer but it takes something smaller than anything a huge  magnifying glass can see to remain and it may then redevelop.  That happened to me.  Fiona also told me had she told me the worst I wouldn't had had the worry free life and third son, and she is right

 

Immediate thoughts..... I would be dead by Christmas etc.  Then my team moved in and boy did they move quickly.  My stage 4 breast cannot be operated on nor the mets in the rest of my body, but bleak as it is I will never beat it now we my body and I  have come to an arrangement it won't beat me either, We will live together with the compromise 

 

Difficult to do at the mo because I am have 3 weeks oral chemo one off and hormones daily plus injections for my bones very 4 weeks.  I feel dreadful not because of the cancer but the medication and have felt the same since I started.  I look at it  as the meds are at the moment feasting on the naughty bits and are not ready to go on a diet, they see to be doing some good.  I also had to have 4 seemingly healthy teeth ( all had a miniscule amount of unseen decay inside, picked by several x rays ) they would have been good for years normally, removed by my dentist because of the injections.  It will find any weakness and affect my jaw big time. So dentist and onc were constantly speaking

 

I had a scan three weeks ago and already the breast mets are decreasing slightly as are a couple of my nodes.

Tiny steps but couldn't run after the tap today.

 

keep up the positive thoughts I know it is hard and sending you huge hugs, and sorry for the essay.  

Amy1988
Member

Re: Worried all over again

Hi everyone. My ct results are back and there is no sign of my cancer spreading! I'm so relieved, it's been a week of hell. I'm classed as high risk (think I've already said this!). They will be starting me on a new chemo on thursday and radiotherapy in a few weeks. I think this is to try and reduce those risks. But like jan said, I can't live my life in fear about it. Thank you for all the support and sorry if I've been a nightmare. I am a terrible worrier!

Amy1988
Member

Re: Worried all over again

Hi westieruth. I'm her2 and er positive. I'm not completely sure what that means

WestieRuth
Member

Re: Worried all over again

Hi Amy

 

The reason i ask is because you might need herceptain and did you have neoadjuvant chemo

WestieRuth
Member

Re: Worried all over again

Hi Amy

out of interest are you her negative or positive ?

Pandabear
Member

Re: Worried all over again

Dear Amy, 

thank you for sharing your anxieties. Please don't ever feel worried about doing so. That's what we are all here for, even if only able to virtually hold you. 

"Deal with what you know", is a mantra that I read somewhere.....right now you are probably going into worst case scenario, (which is of course a natural response too), but until you get the results, you don't know what you're dealing with. And whatever the outcome, you can handle it. They will inform you of all your options, once they know. 

So, as Evie said, in the meantime,  try to find some pleasant distractions. And when Tues comes, whatever it is, you've got this Amy!  And we are here for you. 

Take care. 

Big hugs. 

XXX 

 

Evie-S
Community Champion

Re: Worried all over again

Hi Amy - please please don’t feel stupid or silly or anything else for coming back on to offload and share your fears. It’s not at all silly. This is exactly what this forum is for - we all understand your fear, without you having to explain. I get really stressed before each annual mammogram, especially as twice I had to have further biopsies done - so I know how you are feeling.

When I had my counselling we talked about going down a rabbit hole of fear - and that when I feel a panic coming on I need to try to imagine a big door (mine is the big wooden door in a tree like in Winnie the Pooh, and has a big red X on it), which I close to stop myself going down the rabbit hole and imagining things that haven’t happened. If I let myself go too far down that rabbit hole it’s hard to stop that spiral of fear, so I have to try to catch myself and shut that door before I jump ahead. Does that make any sense?

Of course, it is always easier to suggest ways to cope than actually put them into practice. But you have taken a great first step and come on here to chat and voice your fears. Someone will come along and say something that really clicks for you. You should also re-read your post in which you said that your consultant doesn’t expect to find anything on the scan - as Claudia3609 said, your hospital may well be being extra cautious, and that is good.

I’m here to chat more with you if it helps - I really mean that. Do you have some box sets that you can binge watch to keep your mind occupied? Something easy to watch and keeps your attention?

Sending big hugs. Evie xx

Claudia3609
Member

Re: Worried all over again

Hi Amy, 

 

So sorry you are having to experience this awful journey, I have been reading your first post. It's hard to know what your consultant is thinking but I often think they don't like to commit themselves to saying anything without having scans to hand. I rang the breast cancer now line after my surgery to try and understand what the possible worst case scenario would be. They mentioned that active cells are possible and more chemo could be required. Your hospital may well be being extra cautious. I'm sending you virtual hugs xxx

Amy1988
Member

Re: Worried all over again

Hi everyone. I feel really stupid for posting again! But I'm really struggling to cope. I should have my scan results on tuesday and I've already convinced myself its spread. I'm so scared if this is the case, I can't deal with the thought of dying and never seeing my family again. Some people have said I'm getting too far ahead of myself but I know theres a big chance this has spread and I'm so upset. I don't know which way to turn. The waiting for results is awful. Sorry if this sounds stupid. I feel like I'm in hell at the moment 

Amy1988
Member

Re: Worried all over again

Hi pandabear. I will have a look at that book. I'm just trying to take it one day at a time. Hope you're ok

 

I've now been booked for my ct scan Saturday morning. I'm supposed to be meeting up with my consultant next week too, so I'm hoping she will have the results by then 

Amy1988
Member

Re: Worried all over again

Thanks evie. I'm definitely someone who needs to talk about my worries. I just need to remember to stop sometimes otherwise I depress others! I'm really trying to take all advice on board, but like you said, not always easy. I hope you're well 

Pandabear
Member

Re: Worried all over again

Jan, just wanted to say thankyou for your reply. I'm not in the high risk category, but as Evie, and I'm sure many others including myself, risk of recurrence is always a worry.  But you are so right. Life is for living, and not in fear. Amy, I recently re-read Susan Jeffers, "feel the fear and do it anyway".  It's a good book, that I would recommend.  It may help. 

Take care all, 

XX

 

Evie-S
Community Champion

Re: Worried all over again

Hi Amy - I am so sorry to read your message, but I hope you feel comforted by Jan’s wonderful message. I think most of us worry about recurrence and I am also going ask Jan if she could share the message from her BCN with me too. 

I am trying to think if there is anything at all I could add - but I don’t think there is. Except to say it isn’t always easy to put all this great advice into practice. Sometimes you need to just keep chatting away, even if you say the same thing over and over - in that case, we are here to listen and chat with you, any time.

Sending you love and hugs, Evie xx

Amy1988
Member

Re: Worried all over again

Hi jan. Thank you so much for your reply. I'm sorry your in the high risk group too! I'm trying to cling onto anything positive and I do wonder if my first scan results being clear is a good sign. I am very lucky with my team and it's good to know that they'll be closely monitoring me. You're right, I need to look at this in a different way. I definitely don't want to live the rest of my life in fear, it not healthy for my mind. I think it's more me using the word cure lol. They just go along with it. Would you mind sending me that email please? And I definitely won't be googling, its very unhelpful. I'm glad to hear you're doing well. 

Jaybro
Member

Re: Worried all over again

Hi Amy

As one high-risk to another, I want to reach in and give you a big hug.  I’m now close to 2 years on from finishing my treatment and recently had to have another MRI because of an enlarged lymph node in my neck. 19 of my 21 nodes had been infected so I’m short of lymph nodes on that side now! It was nothing but an enlarged lymph node. The fact that we are high-risk doesn’t mean the cancer IS going to recur; it means there’s a stronger likelihood and our teams will watch us with an eagle eye and pounce on anything ‘just in case’ to ensure that, if it does come back, it’s caught earlier rather than later.

Your scans were clear even before your treatment. They have removed the active cells in this surgery but they will want to be absolutely sure you are clear by repeating a scan. You’re obviously in good hands with your team (although I’m surprised at the use of the word ‘cure’ which is kind of finite in a very uncertain field of medicine).

After I’d finished my treatment, I felt able to ask about my diagnosis (I really didn’t want to know anything much during treatment). My b-c nurse took me through my record and explained what everything meant and what treatment had dealt with what. There was one thing she omitted so, feeling brave, I made the ridiculous decision to google it that night. I cannot describe what that meltdown felt like when I read that my prognosis was ‘poor’. I emailed Belinda in desperation and she wrote me a reply that changed my thinking entirely. Basically the statistics are there for the experts. They inform our treatment. The same goes for the labels. You and I are ‘high risk’. We will be monitored closely. We can’t change that. But should we live in fear?

Let’s say ‘high risk’ means a 30% chance of it coming back. That terrifies me. Until I look at it the other way. There’s a 70% chance of it not coming back. I can spend all my time terrified it might come back and live to a ripe old age and die peacefully in my bed. But I will have wasted a lot of my life living in fear. Alternatively I can accept that it may come back, there’s nothing I can do about it so I’ll worry about it when/if it ever happens. I may still die peacefully at a ripe old age but I’ll have been a lot less anxious. It’s not a simple choice but, the more you think it through, the easier it gets - I’ve found (and I’m a serial panicker). Just don’t google anything!

I hope you find a way to manage your anxiety and perhaps achieve a small shift in your perspective. I don’t think we have a cure for cancer yet (maybe someone will correct me?) but we have lots of treatments to remove as much of the risk as possible - as your team are showing.

I wish you all the best with your results. If you want to see my b-c nurse’s email, just PM me and I’ll send it to you. Take good care of your emotions now.

Jan xx

 

Amy1988
Member

Worried all over again

Hi. I was diagnosed with breast cancer in june. I had ct, mri and pet scans all before I got my results and treatment plan. Thankfully there was no spread and my consultant had said they were aiming to cure me. I've had chemo and recently surgery. But I had a telephone appointment with my consultant today. Apparently, although they managed to remove the tumour and lymph nodes (6/8 cancerous) that there was a 'significant' amount of active cancer cells. So she wants to put me in for another ct scan in 2-3 weeks. She has said that although she doesn't expect there to be anything on this scan that, I am high risk for recurrence. Obviously I'm terrified now and I'm worried that something will show up on this scan. If it does, then they won't be able to cure me. And, although I always knew there would be a chance of it coming back, but now I know it's high risk is an awful thought. I'm really not coping now, I thought I was going to get over this but now it's not looking likely. Its completely come as a shock