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Shock diagnosis yesterday.

10 REPLIES 10
NarniaGirl
Member

Re: Shock diagnosis yesterday.

Hello again, nice of you to get back and reply and I'm glad us members have helped you feel less alone.

I'm also used to being a carer, so I sympathise with how you're feeling. It felt really strange people looking at me and asking me how I was! I think us carers have to learn to focus on our own health and well-being as we're so used to putting others first, so it can feel a bit strange and worrisome, but I kind of needed to remind myself that I had to look after myself too. I was also worried about having the physical/emotional energy to carry on with my caring role, but some of the things I worried about weren't as bad in reality, and with others, some of the things turned out not to be a problem after all, or something else came along in time that helped. When you do get the chance to talk to the dr/specialist, mention all these things as they are very used to it and good with ideas/helping you find any extra support etc. I think I talked to my GP about it and it just helped to talk really and be understood, plus she gave me some practical advice for keeping well, sleeping well etc. 

And yes, I felt guilty too about what I was putting people through even though I also knew it wasn't logical! It helped to talk to myself how I'd talk kindly to someone else in my position. It's weird how common it is to feel somehow responsible when we know that blooming cancer is just common and random, and with breast cancer the biggest factor is simply being female and being older - maybe being carers makes us extra used to feeling responsible and like we should sort everything out by ourselves. Good to get some of the pent up emotion out, it does help - probably better than binge-watching tv to distract myself like I did! Sometimes you need to let it out, sometimes you need to distract/keep busy, you find what works for you at different times. There's various ideas on this website and an app to help keep well emotionally and physically too I think. Keep on keeping on x  

mel71
Member

Re: Shock diagnosis yesterday.

Hi Destiny,

just wanted to add my bit to the other ladies great comments. The worst and most shocking bit is over. The first few weeks waiting on biopsy results, scan results if needed etc, everything is out of your control. I’m a nurse so my imagination was even more active 🤣 Once the results are all in and you have a treatment plan you regain some of that control as you’re part of the planning process.
I was diagnosed in April, had surgery in May and am currently having radiotherapy. It’s all very doable. Those first  few weeks were the worst. Use this forum lots, it’s great and everyone is very kind. 
wishing you the very best 

Mel xx 

DestinyIsAll
Member

Re: Shock diagnosis yesterday.

Thank you, and thanks also to Evie for her earlier reply. 

How are you doing now?

I’m typically a ‘coper’, and I suppose I know I’ll get on and deal with whatever comes, because I have to, as we all are doing or have done. I feel guilty for being the cause of worry to my family, maybe not too logically, but also, some of my children have health issues and rely on my support so I feel I need to be strong and capable to support them. I’m already worried about not having the emotional or at times physical resources to support them. Last night I went to the bathroom to hide a few tears and ended up sitting on the floor having a huge but quiet sob for ages before it would stop. I think I just needed to release some pent up emotion.

The sudden diagnosis and then the complete fear filled limbo of waiting for the next stage is truly awful but these replies are helping me feel less alone. 

NarniaGirl
Member

Re: Shock diagnosis yesterday.

Hi, I just spotted your post which really resonated with what I went through and I just wanted to pass on a few things that helped me in case it helps you too. Mine was detected on my first routine mammogram at 52, so, like you, I was utterly shocked with my diagnosis (grade 2, oestrogen positive, 2 lumps, 1 node). The waiting for the results and the plan of treatment was probably the worst time as I felt in limbo and had little support. I wish I had known back then that I could have rung the Breast Cancer Now telephone support line or Macmillan's as they were really very helpful, calming and practical and full of knowledge they tailored to me personally. Brilliant lot. Also the other folks on this forum. Another turning point was when I was assigned a Macmillan nurse who attended my appointments and who I could ring and go through things with again. What really helped was when she explained how the shock I was feeling was due to the sudden nature of the diagnosis, how I was fine one moment, and had cancer the next, was rather like being in an accident. She told me it was completely normal to feel shocked one moment, numb the next, then sad, angry, fearful, back to numb etc - and not to worry about it as it's the body's way of coping with shock. The numbness/denial for example is the body's way of giving us a break from feeling shocked so it's good to accept it and just kind be aware of the cycles of these feelings.  For instance, you might spot you cope better/worse at certain times of the day, so that's the time to get on with things/do something nice to relax and switch off. I also learnt to be aware that often when I was feeling relatively ok, my husband was sometimes on a downward cycle, or vice versa, and it helped if we just communicated that so we understood. I hope this helps you a bit. I also found the recent book The Complete Guide to Breast Cancer: How to feel empowered and take control by Prof Trisha Greenhalgh and Dr Liz O'Riordan who are both medics and have had breast cancer themselves (Liz has a blog and is on twitter too), it armed me with the information I needed to make decisions (much better than googling) and helped me with the practical and emotional side too, especially regarding family, friends, work. Telling people was really hard, especially my children, but it was easier when I had a treatment plan as I could say I'd had some bad news (the diagnosis) but also some good news (the treatment plan) that could help deal with the bad news. I had some bad memories of loved ones in the past I'd lost to cancer, but there are so many more treatments now for all stages of breast cancer, so there are many healthcare people who will help you on this journey, and lots to throw back at cancer and tell it where to go. If, like me, you've become a bit isolated, do know that you're not alone going through this - it's really good how this forum brings people together. All the best to you  

Evie-S
Member

Re: Shock diagnosis yesterday.

Hi DestinyIsAll - first of all a big hug to you and welcome to the forum. As you will see from the lovely reply you’ve had from Seabreeze this forum really is a wonderful place. It’s supportive, non judgmental and anonymous so you can confidently share your feelings without worrying about what people might think. You can offload and share your concerns on here anytime.

BC is always a shock. I remember mine all too well, 3.5 years ago. I also had oestrogen positive, and went on to have a mastectomy, node removal, chemo and radiotherapy, now on Tamoxifen. You will soon be given your treatment plan - everyone is different, and your team will decide what you need. Once you get going with it you will feel like you are doing what you can to get rid of the tumours.

Do come back on here with any questions you might have, or if you just want to chat. Make sure you take a notebook and pen along to your appointment as it’s almost impossible to remember anything you are told at a time like this (well it was for me!), and write down any questions in advance that you might have. Also share any worries with your oncology/breast care nurse.

My very best wishes to you, Evie xx

DestinyIsAll
Member

Re: Shock diagnosis yesterday.

Hi Jaybro,

Thanks for taking the time to reply. It looks like we share some similarities in initial diagnosis, though obviously I’m still right at the start of this ‘journey’. How are you doing now?

I’m glad to have found this forum, my breast care nurse mentioned it. I can clearly feel a sense of calm  factual reassurance, sensible advice and kind words, much better and more helpful than scary google-ing.

I’m unsure who to tell and how to say it, outside my immediate family, maybe I’ll have some more perspective on that when I know more what I’m dealing with, which I hope will be next week. x

Jaybro
Member

Re: Shock diagnosis yesterday.

Hi 

I just wanted to add to Seabreeze’s wonderful reply to you. I too had a shock diagnosis. I had two tiny bumps appear on my areola and knew never to ignore anything to do with breasts so I saw my GP, who found a lump in my scar tissue (from an ancient benign lumpectomy) and wasn’t concerned. I saw a breast surgeon and he wasn’t at all concerned, especially as I had a clear mammogram from 6 months earlier, but he biopsied the bumps ‘just to be on the safe side.’ When I went back, he said he was shocked to have to tell me I had breast cancer. Further tests revealed more and surgery revealed even more so I went from ‘nothing t be concerned about’ to needing the full menu of treatments in a few weeks. I think, although they know their business very well, sometimes something out of the ordinary presents itself and they learn something new.

A breast cancer diagnosis is a huge shock and you go away reeling and trying to get your head round all the practical implications too. I’d say it is way too much to take on your own, if there is potential support. Like you, I didn’t feel I had close friends but I did have friends and acquaintances and I was amazed at the willingness of almost everyone to offer support, especially with practical things like lifts to appointments and (in the good old days) accompanying me to treatments. That saw me through the whole experience, even when I felt very lonely - half the cancer experience is emotional, in my opinion.

I wish you well with whatever your treatment programme necessitates and assure you, as a phobic with lifelong panic disorder, it is all manageable and bearable. Whatever you do, please don’t google anything - your breast care nurse is there to answer questions, the nurses here are almost instantly available at the number above and are so helpful, and you can ask in the forums for our experiences and opinions. But Google doesn’t recognise your unique circumstances, let alone emotional needs, and can provide some pretty scary information that most of the time is completely out of context! Steer clear of temptation lol.

All the best xx

Bernard_BCN
Community Manager

Re: Shock diagnosis yesterday.

Hi DestinyIsAll

I am sorry that you are going through a stressful time. We have a supportive community of people lifting each other on the Forum, and I hope you find our information useful.

If you'd like to chat to one of our breast care nurses, please do not think twice. Our team is friendly, patient, non-judgmental and happy to talk things through. You can reach us on freephone 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm).

Sending our warmest thoughts

Bernard

DestinyIsAll
Member

Re: Shock diagnosis yesterday.

Hi Seabreeze,

 

Thanks for your reply - it really helps to hear someone else’s positive story first hand, and also facts like oestrogen related potentially being a positive thing. I’m really glad to hear you are doing well. 

You’re right I think in that getting the full facts and treatment plan in place I’ll feel less bewildered, probably not less worried, but at least as you say more ‘on track’, and I think once treatment starts, whatever that ends up being, at least something is being ‘done’. At the moment it’s just scary waiting and uncertainty.

Trying not to dwell on it too much while I know so little and trying not to google. Thank you for the info about the ‘someone like me’ scheme, I will follow that up. x

Seabreeze
Member

Re: Shock diagnosis yesterday.

Hi Destiny is all,

Welcome to the forum. BC diagnosis is always a shock, let alone given you heard over the phone when you weren't really expecting that news and given you also have another medical issue to contend with.   

Your partners response is fairly common, I think many partners try to be positive since that's what they feel they need to do (plus sometimes they don't want to admit anything else to themselves). There is a section on the forum for partners/friends if he ever felt so inclined. 

You say you're not sure you can think of a suitable friend to confide in...if you phone the Breast Cancer Now number (top right hand corner of this web page) you can speak to a nurse and ask to be put in touch with someone who has been through a similar situation on the "someone like me scheme". It sounds like this might be helpful to you at this stage? 

Oestrogen related (or oestrogen positive) bc is generally viewed as a positive thing in the bc world since it  means you can also be treated with a form of medication or hormone therapy, which reduces the risk of recurrence. Oestrogen positive bc feeds off oestrogen. The medication acts as a blocker stopping oestrogen from reaching the breast cells.   

Grade 2 is the middle grade of bc (which is graded from 1 to 3 depending on how aggressive the type of bc is, 3 being aggressive).

Clearly all of our situations are slightly different, but if it helps at all I was diagnosed in my early 40's with grade 2, oestrogen positive bc. I had one moderately sized lump in one breast. They tested 3 lymph nodes (removed from under my arm) to test if it had spread to my lymph - thankfully it hadn't. I had surgery and radiotherapy and have just passed my 6 year anniversary since diagnosis and am doing okay - still taking the hormone therapy to reduce risk of recurrence. I pop back onto the forum now and then to give back (and keep in touch with a few other members while doing so). 

I hope you don't have long to wait for the MRI and follow up appointment after that. Once you get your treatment plan you will start feeling a bit more on track. 

It is totally natural to be worried and scared. Be kind and compassionate to myself and take one day at a time.  

Sending a virtual hug through hyperspace,

Seabreeze X

 

 

 

 

DestinyIsAll
Member

Shock diagnosis yesterday.

Firstly I appreciate everyone’s diagnosis is probably a shock. 💐

I went to see a consultant for a pre op check for something unrelated back in October 19. I did have a noticeable issue with my right breast then, but it was assumed at the time it was related to this other issue. I was quite overweight at that time and the basic result of that consultation was that as the surgery was not emergent, because of my weight he couldn’t add me to the waiting list. To meet (NHS) criteria for a (safer) op I needed to go away and lose weight. I would be followed up in June this year.

I had just turned 50 then so was feeling a bit ‘mid life crisis-y’ anyway, so I gave myself a kick up the bum, lost all the weight asked and got fitter, and went back 1st June. At this appointment I had the proper pre op check and a breast check was part of that. 

Consultant was a bit concerned, nothing major but wanted me seen by his breast surgeon colleague to rule anything out. Went to see breast surgeon on 22nd June. There were some lumps, he wasn’t thinking anything sinister, but to be on the safe side so he could give the other consultant a clear picture he requested same day; mammogram, ultrasound and biopsies (multiple from right breast). He said if he suspects a positive for Cancer result he would always call patients back for a face to face consultation but he felt confident enough that my results would be benign that he arranged a telephone consultation.

He phoned yesterday. He was very to the point, and said that he was very surprised but unfortunately they found cancer in my biopsies. The only info he had at the time to give me is that it’s oestrogen related and grade 2. An oncology nurse phoned me later to introduce herself and take a few more general health details and tell me MRI dept would be in touch. 

My MRI is now on Tuesday 7th. 

Like everyone in this situation I am just trying to process this sudden diagnosis. I have a rare/complex medical condition so I’m used to hospitals and treatment and all things medical so that doesn’t phase me, but I am just so scared. I‘m married and have 5 children, youngest 13, the others are teens/young adults, but they’re all at home because of Covid. I lost my mum when I was very young and don’t really have a close friend I feel I can share with, I don’t want to let on how scared I am to my husband and kids, my husband is firmly in the ‘we will beat this’ camp, but I’m a realist. I want to be positive but I don’t even know what I’m dealing with yet.

I read a couple of posts on another thread of two recently diagnosed posters also with 5 children and it resonated so I thought I would share as you all seem so lovely and supportive, I’m just sorry the circumstances that we’re all posting in.