Just been diagnosed and petrified

Dear Solo 21

I have only just joined this forum myself in the hope of finding some support and I felt compelled to reply as soon as I read your post. I have just finished nearly 10 months of active treatment, having being diagnosed with Stage 2 invasive ductal carcinoma in summer 2019. I have found this forum hugely helpful and inspiring and have often used it to search for tips and virtual support, so I feel you have immediately done the right thing in joining. I have been in awe of all the ladies (and men) on here and on many occasions I have read their stories and found the impetus to keep going when I felt particularly low. I am actually just now finding it hard to adjust to finishing treatment.

As many cancer patients will tell you, you are now at the worst point, you have a diagnosis of cancer but no more information and have to wait for more results. This will cause you anxiety no doubt. Try to take a deep breath. The lump has been found. This is the first step towards your recovery. There has been a huge amount of research into breast cancer and there is a big array of treatment options which your treatment team will tailor to your situation. It is all do-able, even chemotherapy if you end up needing it (that is not to say that you will!), and it will all help you to get through this disease and move forward to be there for your lovely family. Hang in there. Take deep breaths and try to get a breath of fresh air and sunshine today. You can do this. You will need to be super strong but you can be. You can do cancer treatment. This community will be there for you. The NHS will be there for you. When you speak to your oncologist tomorrow you will find out some more information and that will arm you with some details of what you are dealing with.

I just tried to take it one day at a time because if I thought about the longterm it seemed overwhelming. Maybe just try to think about the first step - getting more information and deciding on your treatment plan. I also suffer with anxiety. I try to tell myself to give myself some worry time at some point in the day to try not to let the invasive thoughts consume every minute. This is hard but will get easier as you feel more in control of the situation. Macmillan is a great source of support. I would also recommend Breast Cancer Now who have a helpline and a great support service called Someone Like Me. Sending virtual hugs and positive thoughts to you. 

Hi    My story on my profile just click on my name

Welcome to the group that nobody wants to join but are so glad they found it . Firstly take a breath it will get better ! 

You are at the worst point the waiting to be told exactly what you've got ,you'll find it easier to deal with one step at a time try not to move too far forward to worry about things that may never happen . Deal with the NOW ! 

Once you see your consultant you may have more tests (I don't know what's been done ) or he might tell you what treatment plan is . All very scary but in some way a relief cos you know what is happening ..

Please don't ask Dr Google he is out of date and tells horror stories . Have a browse around the threads on here jump in whenever something interests you or you think that person can answer my question . Whatever your questions are there us usually someone who can answer from experience .

Always remember though ..we are all different and as such react differently .

Before you speak to your consultant tomorrow make a note of any questions you may have and ask them the consultant won't have a problem with that . Also write down any info you think you might forget .

In the meantime time to distract yourself with your family 

take care 

margaret x

Hi PictureThis2,

Thank you so much for taking the time to reply to my message. 

I think you are right, it is the waiting that is the worst, your mind goes into overdrive thinking all sorts of scenarios, but I feel sooo sick at the thought of speaking to the consultant, it’s all being done over the phone because of the Coronavirus. I’m guessing then there will be further tests? Especially as I have issues with my liver too. I’ve had a full blood count done, that came back fine, except liver. The other thing I found out later today was the cancer is oestrogen positive, so I know that much so far. 

Wow, so you’ve done 10 months of treatment. Well done! Was it tough? Was that chemo? What’s it like? What’s your next step? Surgery? Sorry I have so many questions! I’m such a scaredy cat, so worried about having chemo, I’ve generally never had more than a paracetamol every now and then up until now!! 

I like your idea of some ‘worry time’ I do feel that i am being totally consumed by this at the moment, and I’m not enjoying my family when I should be :( at the moment I feel like this is happening to someone else, and I’m just watching - feels so unreal. 

Thank you so much for your kind words, helpful suggestions and positive thoughts and hugs - sending some back to you too x

Hi. Being told this news is a real shock and the waiting on the treatment getting started is probably the scariest of all. I remember being terrified and my mind went into overdrive. Everyone on this site has been there and you will get a lot of support here. You are not alone. Remember that before treatment starts it is most likely you will have CT scans bone scans  etc etc etc so don’t be upset if your consultant says these are necessary. I didn’t expect to have to go through these and it’s hard and the waiting on results even harder. These scans are done so that they can give you the exact treatment to suit you as everyone is different. It’s even harder for you to have been diagnosed at the same time as this virus. If you have a partner/friend see if they can be with you for phone consultation on speaker phone. If you are like me it’s difficult to absorb all the information. So beforehand make a list of possible questions and take notes. Most oncologists are very open to answering questions. Once you have spoken to the consultant and once treatment gets started it will be better and you will find the strength to deal with it. Somehow we all do.

Sending best wishes for your treatment. Your message brought out all the feelings I had at the beginning and felt I wanted to reach out to you. I have been through chemotherapy and surgery and now just about to start radiotherapy. You will get there too.

Cuddle your babies and try to stay positive.

Jojodot X

Hi Solo21

Thank you for your message and for the positive thoughts and hugs! My treatment has been mastectomy, then axillary node clearance, chemotherapy and radiotherapy (just finished that) and now long-term medication. It is all do-able, not easy, but do-able. Im like you, before this I rarely took medication, even basic painkillers, so I was very scared of chemo in particular. If you click on my username you can read my full profile.

There actually isn't anything that my medical team haven't thrown at this disease and I have had very good care. I'm finding it hard now just adjusting my mindset from actively fighting it to living with fear of recurrence, but I think that is something a lot of cancer patients have in common and can mutually understand. Again, I'm just trying to do it one day at a time, and find the joy in every day - lockdown or no lockdown!  

I wish you lots of luck tomorrow when you talk to your consultant. As Northerner says, its a great idea to write down any questions you have. I always forget everything when I get into a consultation so a list of questions or concerns is a very good plan. As for further tests, it might be that you need some, as you mention you have liver issues also, but that will depend what tests have been done already and if they need to know anything more before proceeding with the first part of the treatment plan. Usually there is a meeting between the various clinicians involved in your care before the plan is communicated to you but your Consultant might tell you a bit more about that tomorrow. 

My cancer is (was - I can't get used to saying "was") also oestrogen positive. I have started on a long-term med Letrozole which is one of the meds that lots of women take post-menopause to treat oestrogen positive cancers and reduce the risk of recurrence. For those pre-menopause, Tamoxifen is often given instead. I have ended up getting that medication right at the end of treatment but every case is individual and your plan will be tailored to you. 

Let us know how you get on. We will all be here on this site to support you through whatever is happening next for you. Be kind to yourself and try to find some time to do something that you enjoy or that will relax you a bit (relaxing must be hard with four children I guess!) Sending strength for tomorrow, you can do this. x 

Hi Solo21

Firstly, I’m sorry that you find yourself here, but as various replies have already said we all know how you feel at this stage. Not knowing, imagining the worst and your mind in overdrive, not being able to concentrate on anything. I promise you you will feel better once you have a plan. Take each step as it comes and try not to think about the big picture. Breast cancer is very treatable, this is what I was told and the only thing I really remember when they confirmed to me I had it.

As already suggested DO NOT look at things on google, massively inaccurate and each and everyone of us is slightly different. I know two people who had the same cancer as me but had slightly different treatment. We also reacted differently to surgery, chemo, and are taking different follow up medication.

Once you know what you’re dealing with then here is the best place to ask questions, voice your concerns/worries etc. There is always someone that can offer some guidance. 

I didn’t ever think I’d get through it all, but nearly a year on and I start five days of radiotherapy next week and that’s the invasive treatment over with.It seems a long time ago I first heard my diagnosis and in other ways it’s gone quickly. I will need to take some oral medication for a few years and have hormone injections once a month for 18 months, but thus seems a small price to pay to keep me as safe as possible. 

Good luck for your call with the Consultant tomorrow and have your list of questions, and as someone else said, if you can have another pair of ears listening on speaker even better. 

Take care and stay safe. Sarah x

Hi Northerner, thank you so much for replying to my message. Apologies for the delay - I’ve not been feeling great, think I somehow picked up a virus??  plus a teething 9 month old! 

I read your story, my goodness you have been through a lot, the way you’ve dealt with it all - amazing! 

So, now I have a name for what I have - Invasive Lobular oestrogen positive HER2 negative. Still awaiting the official staging, as had MRI and CT body scan today, but looks either stage 2 or 3 with potentially 2 lymph nodes involved. 

I will hear next week what the plan is, but potentially apparently I could be in surgery in a couple of weeks time, or started on medication to shrink before surgery. It all seems to be happening so fast. 

I am the worlds worst at living too much in the future, so learning to live in the moment is a totally new way of thinking for me. Also the worlds worst at googling - I think I’ve spent hours on Dr Google, I’ve stopped now though as I think I’m making myself even more sick with the overload of information.

I think the one emotion that seems to be overpowering everything right now is anger! I can’t believe how angry I am about having this - is this normal?? I certainly don’t feel normal at the moment. 

The main thing that is keeping me going are my babies (and the bigger ones). They are my best distraction.

Thank you for your reply, suggestions and positive words x

Thank you for your lovely reply Jojodot, I have now had an MRI and CT body scan today, awaiting the results from my consultant next week. This waiting game is horrendous. My head is in total overdrive, I have been bad with googling, which I know is doing me no good. 

I honestly don’t know how you amazing ladies have done it/are doing it. I’m not sure I can be as brave as everyone on here - any of the medications/treatments terrify me. 

The virus has meant that no one can come to appointments, but at the same time it has meant tests have happened quicker and results have come back sooner. 

How did you find the chemotherapy? I think that’s what I dread most. Good luck with the radiotherapy too. 

Im trying so hard to stay positive, so hard sometimes, finding I’m quite angry about it all at the moment. 

Cuddling the babies certainly does help massively - it is the one thing keeping me going right now. 

Take care x

Hi 

Its good to see an update from you, I was keeping my fingers crossed for you. I hope its not THE virus you picked up?? At least you know what you are dealing with now. It sounds like you are at a similar stage to me at diagnosis (mine was invasive ductal with 3 lymph nodes involved), and they will hopefully move very quickly with the treatment, whether its surgery or medication first. I have to admit I also did a lot of Googling. Some was very helpful actually but some of it just scared me, so now I stick to a few sites that I trust like NHS, Breast Cancer Now and Macmillan.

I can identify with the anger. I found that after the initial shock and upset, I would often feel angry at everything, at my situation, at the fact that the cancer hadn’t been seen on mammogram, at the fact I would have to go through some drastic treatments, I wouldn’t be able to work for ages, I just wanted to be there for my family and the cancer was trying to stop that, at the fact that my fitness fanatic lifestyle and healthy diet hadn’t been able to prevent this disease… basically I think I was angry at my own helplessness. I still get the anger now and then, alternating with other emotions. I think your reaction is totally understandable, there is no right or wrong way to feel. Getting a cancer diagnosis is a big deal and you are doing amazingly to cope with this alongside looking after your family. If you need any advice or support or just to vent, everyone in this community will be here for you. There is a wealth of knowledge here and no question will be too daft. You can get through this. We can all give you lots of help through the surgery, chemo or radiotherapy, whatever you end up having. Usually once you are getting on with the treatment and feeling like you are actively fighting the disease, none of it is quite as bad as you anticipate and it is all do-able.

Best of luck for your scan results, I’ll be keeping my fingers crossed for you. xx