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New diagnosis. Didn’t want to know exact diagnosis

8 REPLIES 8
Jet75
Member

Re: New diagnosis. Didn’t want to know exact diagnosis

Thanks for response Evie.

I have me treatment plan in place, start chemo next Thursday for 6 months, then surgery, then radiotherapy. Yes I feel better this in place and while I am speaking with the team I feel ok, but leave me to myself and I am struggling again.

So while I know I need to be positive and strong the future does frighten me how this will all turn out particularly with the extra involvement of the neck nodes 

Evie-S
Community Champion

Re: New diagnosis. Didn’t want to know exact diagnosis

Hi Jet75 - I’ve just read your post, although it’s addressed to Jill I wanted to also welcome you to this forum and hope that we can all support you as you go through treatment. It is very early days for you and I’m sure you feel like you have just been hit by a truck that came out of nowhere. Bizarrely, it will get easier once you have seen your oncologist and have a treatment plan in place. 

Please feel free to chat on here anytime, or ask questions, this is a lovely safe place to ask, without judgment. Also you might want to call the lovely nurses, their number is on the top of the page. There is also a service called “Someone like me” where you can be put in touch with someone who has gone through similar to you.

I had chemo, followed by a mastectomy and lymph node removal, and finally radiotherapy, so I’ll be happy to answer any questions you might have.

In the meantime I’m sending hugs and strength. Evie xx

Jet75
Member

Re: New diagnosis. Didn’t want to know exact diagnosis

Hi Jill

I have just joined the forum having been diagnosed on Friday, very similar to this lady with her2-, breast lump and nodes in arm and neck. I am waiting now to see the oncologist and start treatment of chemo, RT to neck finally surgery for breast and arm nodes. 

It's been a very scary few weeks and still feeling very anxious now and need to start this journey. 

I see you are a community champion and reply to alot of posts, do you have any advise, experience of my diagnosis ? Alternatively you mentioned one of ladies you gave known for 5 years who had neck nodes, I wondered if you are still in touch and whether they would be happy to private message  me with their experience going through treatment ? Thanks 

 

Jill1998
Community Champion

Re: New diagnosis. Didn’t want to know exact diagnosis

Anxiety is just the worst thing isn't it - once your brain starts racing it very hard to stop it - I have been cripppled by it at times myself .Its good that you have found your GP and nurse helpful to talk to .The nurses on the helpline here are very helpful too if you wanted to give them a ring .Hopefully once you start your treatment you will feel more settled as you are actually doing something to deal with the cancer .

Shakey4
Member

Re: New diagnosis. Didn’t want to know exact diagnosis

Thank you everyone.

jan like you I am really anxious add into that that I am a complete overThinker has not made for a good mix at the moment. I always had low level anxiety but this has just ramped it up! I just feel that whatever they tell me I will stop pick up all the worst words or read into the way they’ve told me over and over again. I’m a nightmare at the moment. I have my surgery appointment with the dr on weds and then I start chemo on thursday 20th of carboplatin and doxctaxil (I think) as it’s a new-adjuvant treatment. I believe that just means chemo then surgery rather than the other way round. It’s all happened very quickly!
i do wish they’d choose Different words when describing things lol 

Aha I learned early not to google and only go to this site for information. I just don’t seem to want to know in case I don’t actually want to see what it says (if that makes sense). I got quite worked up the other day and did phone my nurse and gp who were absolutely brilliant and helped me shut my brain off a bit (that’s where it didn’t help that I knew more clinically because of where i work) I might give my nurse a call today as not sleeping very well. 
you’ve all been great, thank you for responding . 

Jaybro
Member

Re: New diagnosis. Didn’t want to know exact diagnosis

Hi Shakey

At last, a fellow ostrich. Like you, I just didn’t want to know the details of my diagnosis. The language of oncology can be alarming and basically there’s nothing we can do to change the situation so why not just trust your team and focus on getting through the treatment? I suffer from severe anxiety and, once I’d made sure they would take this into account, I just went with the flow and did as I was advised. If it helps, I had 2 tumours removed, one with low margins, and 19 of my 21 lymph nodes were infected, proving they do a fine job as I am still cancer-free.

I did ask my breast care nurse to go through it all with me after I’d finished treatment but I realised it didn't really mean anything to me except to explain why I needed various adjuvant treatments. 2 years on, I still couldn’t tell you. However, there are other people who can reel it all off and it’s important to them to feel they are in control of their treatments. We all deal with things differently. 

The information is there for you any time you want it. You will receive a copy of every letter sent to your GP and the details will be listed - but you don’t have to study them unless you choose to. I chose not to. You will know when you feel strong enough for that. Meantime, you know you have a ‘nasty’ form of breast cancer and your world has turned upside down. You may need, like I did, to focus on your emotional and mental wellbeing for now and leave the details to the experts- till you’re ready. Just PLEASE, when you have a sleepless night, do NOT turn to Google for answers. Ring the nurses here, email your breast care nurse, anything but Google - it generalises and can be terrifying because it’s all out of context.

I wish you all the best for what lies ahead. It’s not easy but, in most cases, it works. Don’t think about your work - we are all different. And don’t feel bad for not wanting to know. It makes complete sense to me!!

Jan xx

Justplainpat
Member

Re: New diagnosis. Didn’t want to know exact diagnosis

We’re all different. Some of us want to know absolutely everything about our cancer from the very outset. Others prefer to be dripfed more gently as the treatment progresses, on a ‘need to know’ basis. Then there are those who prefer to put themselves completely into the hands of their care team, get their heads down and quietly get on with it without ever needing to know the finer details. We are all unique individuals and we all have individual ways of coping. Whatever path we choose is a legitimate and acceptable one. You may find that you need time to process and get your head around the information you have been given before formulating questions and seeking further clarity. I suspect that your professional oncology experience and knowledge will prove a mixed blessing. 

Be comfortable about doing things at your own pace and take all the time you need to absorb the enormity of what can only be seen as a rotten situation. Believe it or not, things do get easier once you have a treatment plan and a clear way forward. 

Good luck and take care. 

Jill1998
Community Champion

Re: New diagnosis. Didn’t want to know exact diagnosis

Hi ,welcome to the forum .We all understand how ****** scary It is .Not helped by your Oncologist using the words " nasty " really 😳 is it - you want calm re-assuring ," we can deal with this " . I was diagnosed 5 years ago and in that time Breast cancer treatments have developed so significantly I can't even keep up .For the vast majority of people treatment is successful - even with " nasty " cancers .You should have been allocated a breast care nurse - maybe ring on Monday and ask some basic questions - size of cancer ,type of cancer ,most likely treatment for this and come and talk to us here - don't google .I made some really good friends on this forum 5 years ago - all still with us now and well at least one had lymphnodes in neck that got a good zap with radiotherapy .Always someone on here to talk to who understands .Jill x 

Shakey4
Member

New diagnosis. Didn’t want to know exact diagnosis

Hi ladies

 

ive been recommended this group by another lady.

i saw my oncologist for the first time today. I’ve had several scans and biopsies but when it came to it today I didn’t want to know the exact form of breast cancer I have got. 
the oncologist is amazing but she kept saying it was nasty (oooo). It’s in my breast and 4 lymph nodes, 2 under my arm and 2 in my neck.

im now wondering if I should have just bitten the bullet and found out but her wording put me off slightly. 
I did see on the screen one part which said HER2- but have no idea what that means and haven’t googled it.

 

i actually work on an oncology ward at an acute hospital so have always seen worst case which has sent me into a bit of an anxiety freak. 

I start chemo on Thursday and then will have surgery and radiotherapy. 
not sure that I’m asking anything in particular just somewhere to put this down. 
oh I’m 39 with a husband and 3 boys.

this **bleep** is scary