Diagnosed with breast cancer a couple of weeks ago and feeling low and anxious

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I was diagnosed with breast cancer a couple of weeks ago.
The consultant said it was a grade 2 tumour of about 20mm but not to worry about it. They wanted to do a MRI scan but couldn’t fit me in until last Tuesday so I was in limbo for a week and a half not knowing if there was anything else they would find. This made me very anxious and I haven’t been sleeping or eating. I visited a cancer group and saw my doctor but no one could really help me until I have been fully diagnosed so I still felt in limbo. (I felt fine briefly after I had spoken to someone but that passed after a few hours and I felt anxious again)

I had my MRI scan last Tuesday and was due to have the consultation on Thursday but the hospital phoned up on Wednesday night to say that they were changing the appointment to Friday. They didn’t say why or what time so the whole night I was worrying why and what else they could have found. Not only that, I was aiming for the Thursday consultation all last week and this week which I was already finding stressful and difficult and then to move the goalposts at the last minute!

They wanted to do another ultrasound scan to verify something and they only did that on Mondays and Friday’s so I had it yesterday. They thought that there was another lump but it turned out to be part of the same original tumour which meant that it was larger than they originally thought. It is now 56mm not 20mm!

Im not big in the breast area and I’ve read that this is very big compared to my size.

The hospital have suggested a few options. The first is to do chemotherapy to shrink it followed by surgery and then radiotherapy. They will need to operate first of all to remove some lymph glands as well. Another option is to have a mastectomy straight away but I will still need chemotherapy. The hospital said that the cancer could come back with either option as well.

First of all they said it was nothing to worry about and now they are telling me this. My mind is spinning as I feel I have a death sentence over me.

I have my my husband and two boys (both adults now) so I’m in a male orientated environment so I feel a bit on my own. My mother isn’t too well and my father passed away recently too so she is still grieving for him and I don’t want to put on her.

I phoned the Breast Cancer Care line and they were reassuring and told me about this forum.

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Hi,

 

I think the doctors always tell you about the worst case scenario, it does not mean it will happen to you.   It’s not like the old days where you were told as little as possible and treated like a child.  

 

I was only just diagnosed and have not started treatment either and I agree it is absolutely frightening.  The not knowing what you are going to have to deal with psychologically is probably harder than actually going through the treatment.   

 

All I can do is wish you well and say you do not have a death sentence, but you will have a treatment plan and once you know what it is you will be able to settle. 

 

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Hi 7oanne,

So glad the helpline pointed you into the direction of this forum. There is so much help, advice and virtual hugs here for you. It is a great place to share, rant, rave and cry and moan - as well as have a few laughts. There will always be virtual arms ready to comfort and hug you.

There are many threads, which you may find you wish to join as you go onto this journey.

The early days of diagnosis may really the most challenging initially. A diagnosis is put together bit by bit, as additional tests are done. It is a roller coaster without doubt. It appears you have a number of decisions to make and I hope what I shall share might be of some help to you.

It has to be said, even if it is hard, that a final diagnosis can only be made post operation, when the removed tissues are being analysed by the pathology department. However, all the tests you are going through now should give a good indication. 

I like you - am also small in the breast department, which in the end turned out to be a blessing in disguise.

Having been diagnosed with a lobular invasive in January (currently going through chemo - post op) my path was not that dissimilar to yours - initially thought 20mm, then after MRI 30mm Grade 2. ER+, HER2- I opted straight away for a skin sparing mastectomy with immediate reconstruction, as I wanted to make sure all was gone. Being a 36B this was very doable - I even had a new nipple constructed from my own breast skin. The result is fabulous - I am so happy. Unfortunately my cancer, due to being an invasive and being small breasted (hence dense breast tissue hiding the strands) - was just a bit larger than initially anticipated - it turned out to be 110mm. I am so very glad I opted for the mx. At the same time they took 3 nodes with the sentinel node biopsy to check, whether there may have been any spread to the lymph system - thankfully and very unusually - no spread at all. I have been so very lucky.

It is only after your operation that the final diagnosis and results will be known. This is also the time, when you can get an indication of your 5 and 10 year prognisis of recurrance. In my case chemo was initially not even thought of - but of course after the pathology results, there was no choice. Some of the prognosis may be dependant on the receptors of the cancer cells. With me - being hormone receptive - I shall be on hormone blocking treatment for the next 10 years at least. If I would have chosen not to go throught the rigours of chemo treatment - my prognosis for the next 10 years would be 8% lower - so for me it was an easy decision to make.

I hope that some of this is of help.

Please let us know, how you get on - if you wish to - we are all here to support you.

Hugs

Sue xxx

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Thank you Stacy, Charys and Sue for your kind replies. I have been in turmoil all weekend but reading them has helped me (but I still get drawn back into the dark pit whenever I have time alone to think).

 

I agree with what you said (Stacey and Charys) that these last few weeks have been psychologically hard. First of all I was worrying about what else they might find when they did the MRI scan and now I am worrying about the size of the tumour compared to me.

 

A lot of the posts I have seen here have been about tumours around 5mm - 20mm and that is another reason why I am worried - that it may be too late for me as mine is 56mm (and I’m a 32B/C). You are the only one so far (Sue) that has had a large tumour and to know you have been coping has given me a bit of confidence.

 

I had a biopsy about 6 weeks ago when I had the initial mamogram and ultrasound scan. The sample they took showed the tumour as a grade 2 but last Friday when I saw the consultant, he said that there could be bits that are higher and therefore would have to take the worst case scenario. It’s as if he might already know something.

 

I can’t help thinking that the Consultants may know more than they are telling me and are going to tell me a bit more shocking news each time.

 

I keep getting sudden waves of panic and get very teary. I can’t seem to do anything to stop it either - I’ve tried listening to Anxiety and Stress podcasts. It helps briefly but it doesn’t last for a long time.

 

Did anyone else get waves of panic and similar feelings when you were first told and if so how did you cope? Is it normal for me to think these thoughts?

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The panic I felt was horrendous, I could barely focus on simple things like washing the dishes, I couldn’t hear the birds calling, the world felt flat and dull. As for it coming in waves, absolutely, one minute I felt strong and resilient and positive, then for the following 10 minutes I was hysterical, to be frank. The waves of panic were all the time at the start, but gradually they became less frequent and the strength and resilience became more frequent. Allow yourself to feel that way, it is a natural path to  acceptance and the stages on it are painful at times.   I went to my GP and was prescribed some lorazepam to use a little each night, I only needed a tiny amount, less than prescribed, but it at least gave my brain ‘off time’ and gave my body a bit more strength and therefore ability to cope mentally. If you find you are anxious and not sleeping, do go and ask for some help as its so important through this whole period that as much rest as possible is gained.

Sue is absolutely right, focusing on the future is the way to go.  There is and will be a future and no matter what you are told, or find out. Once you know your treatment plan, start thinking what you will do after its finished…will you celebrate with something you’ve always wanted for yourself? 

ANother strategy is to try and split the problem into smaller chunks. Everything is overwhelming right now, but everything that’s happens from now on will be done in little stages…so tackle each one individually. The day of getting results, the day of hearing your treatment plan, the day of surgery, the day of…you get the idea. There is so much to take in and so much to think about, it is just too distressing. My BCN said to me to take my time, do things at my own pace, make decisions as I wished , but most of all to overcome challenges step by step. Don’t think too far ahead, that will come in its own good time. :0)

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Thank you again Sue and Charys. You are being really kind spending time to reply back and re-assure me. It does help when I read them and know that it is normal to be feeling like this and to hear that it will get easier although right at the moment it is very hard. Thank you for the tips on how to cope too.

 

I had another shock yesterday though as well. The hospital rang at 9:30am and wanted me to go back for another ultrasound scan (That is on top of the one they just did last Friday). I was already due to have the consultation with the Oncologist tomorrow and they wanted to check on yet more things before then. When I got there I found out that the main Breast Surgeon had been discussing my case with the main Radiologist on Sunday. The main Radiologyst actually took the ultasound scan this time and said that there was something that he needed to proove as there was another lump that he thought was benign. He ended up taking 9 more biopsies over three different areas. He was implying that if it’s not benign, the lump is even larger than the 56mm that I am already shocked about. He didn’t say but I am now thinking that this is what the Radiologist should have been looking at last Friday but didn’t and that was why I was being discussed over the weekend.

 

I was in shock yesterday and didn’t have time to think or worry about them taking more biopsies but today I have had time to ponder and from my perpective, it doesn’t look good. I am now back in the pit, anxious and tearful.

 

The Oncologist consultation is now on Thurday morning if the biopsy results are back in time.

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Hi 7oanne
Please try not to worry. I know it’s easier said than done. My lump was initially thought to be about 11mm X 13 mm but after pathology it was confirmed the total area affected was 60mm. I had a mastectomy and SNB where it was discovered one lymph node had a tiny speck of cancer in it. 2 mm so it was suggested I had full node clearance. If it had been less than 2 mm I wouldn’t have been given the choice. My consultant has said they would be “gobsmacked” if any further nodes are affected. Like Sue mine is Er+ but HER-. I will be having chemo and then hormone Therapy for 10-15 years. My prognosis is still the same though even though the area was bigger than initially thought. It does feel like one step forward and two steps back sometimes but I promise it does get better once you know exactly what you are facing.
Sending hugs
Love Sarah x

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I was dagnosed about 3 weeks ago…scheduled to see plastic surgeon tomorrow…surgery soon after…I’m very scared and nervous…what is the recovery time…will I need someone to care for me afterwards…

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Such a helpful uplifting post…having a new wobble myself after a few days of new bewildering side effects and too much time to think…thank you everyone xx

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Hi 7oanne
You will have up and down days. I had a down day yesterday and spent 10 mins crying to myself, then I zonked out for 3 hours!
Fingers crossed for tomorrow. I am seeing the Oncologist tomorrow for the first time so no doubt it’ll be a sleepless night tonight.
Sending hugs
Sarah x

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I’m sure you do feel absolutely dreadful. Its just THE worst situation to be in waiting for everything to be explained and put in place before your treatment plan starts. Hang on in there…it WILL become easier…just put trust in these skilled medics to find the best solution for you. I so know that jittery feeling, my results were a few days later than expected after surgery. When I went I’m to see the surgeon, she walked past me in the waiting room and said in passing ‘oh isnt your husband here with you’. He was sat a few sears down. I instantly thought that she wanted to check I had emotional support for the horrendous news she was about to give, and asked why she asked. She saud she was just surprise he wasn’t there as had been to the two previous appointments. Sometimes our minds go into overdrive and as we have no information, which is very stressful, we start applying our own logic to scenarios. Sadly, as you/ we are scared and jittery and full of emotional tense thoughts, often the logic we apply is off the mark. X

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I had to have an mri before surgery and that revealed several more tumors in the same breast near the same area…they are very tiny but it is first stage cancer…I was also diagnosed with a separate cancer attached to the milk duct…it is zero stage but it can break away from where it’s at and cause cancer in other areas of my body…I am scheduled for surgery in 2 weeks…but still not sure if they are going to take the breast or not…I’m so frustrared…and the anticipation is driving me nuts…I believe im in denial because I’m so calm about it…I don’t know how to express my feelings about it…

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Wow…our cases are simular…my mri revealed several more tumors…they said not to worry…then they send me to see a plastic surgeon…it’s been 3 weeks since I found out…I’ve had 2 biopsies 4 ultra sound…I have 2 titanium clips inside my left breast…and should have surgery in 2 weeks…I’ve been going through this alone…I attend all my Dr appointments alone…I feel that this is something I just have to go through…I try to stay positive…and I’ve connected with a spiritual group to stay up lifted…hang in there sister…you are not alone…

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Impossible to always stay positive…we are bound to feel alone sometimes in the face of something so huge.But the human body and spirit is so great.its early and I’m rambling!:)for me the risk of infection in between treatment is my huge thing as I suffer from a dear of germs and illness anyway so this is the ultimate test for me…walking everyday in a world that feels unsafe and a threat to me.have decided after a stint in hospital this week to cut my work to practically non existent as I just can’t keep getting up at 5.45 any more…even though I’m only there 2 hours.hate giving in to this but pushing a hoover round at 7 in the morning…maybe I’m weak giving in? Money…I’ll just have to manage.Bless us all as we get up and fight another day.mans we will x

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Hi lh1357

so sorry you had to find yourself here, too. But it is a good place to be. There are many vitrtual hugs here for you and it is a great place to share your worries, questions, rants and tears. You will find much help and also positive stories of women, from all walks of life, who also have faced this.

Like you, I have dealt with all of my diagnosis and treatment, on my own. Apart from not having any choice, I actually prefer it this way, as I do not have to worry about others, their thoughts and feelings. I need all of my energy for myself to deal with the treatment.

I am a little concerned that you may not appear to be fully aware of what the thoughts/plans are as to ensuring the best possible outcome for your diagniosis.

You should, by now, have a Breast Cancer Care nurse assigned to you, who is there to help you understand the conversations had with your surgeon and also your diagnosis. Any decisions, as to your treatment should be made by a treatment team, who will have discussed your case in much detail. The final decision on your treatment and how it is carried out, will be made by you, once they have shared their throughts with you.

Knowledge of your diagnosis and understanding of it is very important at this stage - so if you can - please try and use the resurces available to you to become better informed. It is not easy and all of us will have felt at some stage completely overwhelmed and scared. Gaining the relevant knowledge by talking to our treament team is empowering and helps greatly to understand the final outcome. 

They ought to have shared with you what type of cancer, provisional size/s, grade/s and stage - as well as which receptors the cancer cells respond to. This should give an indication as to which treatment would be most appropriate and confirmation of the treatment plan is usually after operation and pathology results. In some cases, of course, treatment will start before an operation to shrink tumours to help with a good surgical outcome. In others, such as mine, the operation is the first step.

There are many different operations done today, so your team should really discuss this with you in detail, i.e. explain the options available to you, their specific preference and why - and the final decision of which type of operation should then lie with you. 

It may be an idea to contact your BC nurse to get some clarity as to what operation is planned for your ‘date’ in two weeks time. It should give you time to understand it better, as well as being able to make possible relevant preparations, too. You may need a special bra post surgery for a while, time off, etc., etc.

Let us know how you get on.

Hugs

Sue xxx

 

 

 

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Hi Sue

Thank you for your uplifting words again (I can’t find how to pm you).

t was a mixed day yesterday. I was absolutely terrified about what else I would hear whilst I was in the waiting room. When I saw the Breast Surgeon, he said that one of the other lumps they found turned out to be benign (which was different to what the nurse told me the day before). He said that they hadn’t got all the results back from the biopsies on Wednesday which was why they shifted the appointment to Friday instead of Thursday. He said it was still 56mm and gave me the two options again. I have decided to have a mastectomy as I want it gone so he said I might have an operation at the end of next week.

I am a bit relieved that there was nothing else found but I will now worry about the operation looming. I will be glad to get rid of it though.

They offered reconstruction but I’m not going to have that yet if at all.

Thank you for your support.

Jo

 

 

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Feeling anxious again today about impending op mx, haven’t even found a suitable bra, any advice on what would be best as I only have padded underwire ones.  If anyone could point me in the right direction it would be very much appreciated 

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Hi 7oanne
Marks and Spencer post surgery bra. Most comfortable and soft. You do not have to pay the VAT if you fill out the little label attached. Get it one size larger, as you might initially have some swelling. But then also 1 cup smaller. Si in my case being a 36b I got a 38a. But only buy one, which is larger. And perhaps another in your size.
It is understandable that you are worried. You will be fine. Are you having an expander pocket put in?
Front opening top will also be good, so you don’t have to pull anything over your head initially.
And - do you have the information for your arm exercises? They are so important to do.
Pm me if you have any questions at all.
Hugs
Sue xx

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I also like the M&S bras, they are lovely and soft. I didn’t actually wear a bra for the first couple of weeks even though I have had an expander recon. I just draped a shawl around me when needed to go out (mainly to hospital appointments where I had to remove my top anyway!) or wore vest tops. I was quite swollen though and couldn’t face the thought of a bra.
I also agree about the painkillers. Take what you are offered xx

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I cannot add much to what has already been said but can agree with it. This is hard to go through on top of everything else but you will get through it.
The diagnosis is scary but as has been said move in small steps and try not to overwhelm yourself with trying to see the whole picture. That picture can change.
Counselling may be useful for you. I am going to see an oncopsychologist who is Macmillan trained. It can help to unburden your worries onto someone impartial but has the knowledge of what you are facing.
I had my surgery 5 weeks ago and still have the odd wobble but am mostly ok but I was the same as you emotionally when I was diagnosed. I spent a lot of time crying in the car. Sending you hugs x