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Recently diagnosed and terrified

21 REPLIES 21
Sisterjayne
Member

Re: Recently diagnosed and terrified

Hi Macky , I'm pretty sure that the reason they do MRI scans is to pick it up they are far more refined than other scans and will show up everything so keep positive again . I did have my surgery yesterday and I'm doing well ,I had a lumpectomy and sentinel node clearance which was neg so I'm very relieved today , a bit sore but not too bad.and yes I'm being spoilt by my lovely sister who has been through this herself so knows exactly how I'm feeling. Honestly this is the hardest time for you waiting for surgery , I should know I was in the same position only 2 days ago and believe me when I say you will feel so much better when it's gone and you have a plan of treatment , only then can you move forward and get some normality back in your life.At the mo it's all very surreal I'm sure and you certainly can't be blaming yourself for this , unfortunately this can become the enemy to anyone at anytime , my mum and my sister have both had bc and are doing well , we do not have a genetic link ,I was told I was low risk and here I am ! So be positive and try not to read too much ,also don't forget that every one of us is individual in our diagnosis , treatment and you will be given the best care for you , try and keep pos and take care love Jayne xxx
keeks
Member

Re: Recently diagnosed and terrified

Hi Macky

 

you will read just as many posative stories on here as negative ones. More. If it didn't show up on an MRI they wouldn't have wasted money on one. There are rare cases in everything but it's not going to help you to focus on one negative story. Lets face it. Any one of us could be hit by a bus tomorrow.

 

please don't play the blame game. I think many of us do it. I had a hysterectomy 9 years ago and fought like hell to keep my ovaries.  Changed doctors and hospitals to keep them and have tortured myself with that decision. I have even been told 'what did I expect being a smoker' 

 

Even super fit healthy people get breast cancer.  Old , young, cancer just doesn't care who it hits.  You can ask 'why me' but I'm afraid the answer is just 'why not' . 

 

I give myself permission to wobble but put a time limit on it. Say 15 min then give myself a shake. Pick myself up and carry on.  You will find your own way, in your own time,  once all the tests are in and you have your treatment plan things will get easier. You can start to plan,   every cancer is different. You have already recieved some good results with your scan and blood tests.

 

I hope you get your next appointment soon.

 

take care

 

Keeks

 

 

 

 

Bluesky123
Member

Re: Recently diagnosed and terrified

Thank you Jayne x

I'm now wobbling because I read a posting here saying that lobular cancer can be present but not seen on MR scan, I thought, from what the consultant had said, that it could be lurking and not seen on mammogram and ultrasound but did show on MR. So now I don't know which is correct. Afterall, if it doesn't show on MR how can it be seen other than in histology.

I feel like having both breasts removed - and both ovaries to cut the oestrogen down, I'm just so wanting to get this cancer out and behind me and avoid recurrence.

I've also been reading about the places that lobular cancers met to, it's all so scary. 

Then I torture myself about why I have this, whether it is my fault bla bla bla.

It's all a nightmare, I would LOVE to wake up and find it had been a bad dream, i'm sure everyone on here would. It's so horrible.

Sorry for being a moan, I just struggle with the fear and uncertainty.

Did you have surgery yesterday Jayne? How did it go - eally well I hope, and I hope you're reovering with some TLC at home.

xx

Sisterjayne
Member

Re: Recently diagnosed and terrified

Hi Macky , hang on to the fact the results are positive and we all have our wobbly moments that's what this diagnosis does for us all ,but you need to take one day at a time and try to not to let the negative thoughts take over. That's a good idea give yourself a good talking to girl!! We have all been here , you are not alone , if you have a wobble just come on here and share it and it will help , the ladies on here are so supportive and everyone of us knows how you are feeling at the mo. take care sending you love xxxxx
Bluesky123
Member

Re: Recently diagnosed and terrified

Thank you Jayne and Jo. My wobbles have just returned in the last hour I don't know why! I'm going to give myself a good talking to! I just need to stay calm until I meet with the consultant next and find out what the plan is, what the options are etc. I am pleased with the reults given to me today 🙂 xx

Sisterjayne
Member

Re: Recently diagnosed and terrified

Hi Macky I'm so pleased for you ,that's very positive news, it's such a stressful time and as I said we all think the worst ,but I'm sure you're feeling so much better after hearing these results today and you can move forward with your plan , you can beat this !! Love Jayne xx
Jo1
Member

Re: Recently diagnosed and terrified

A treast sounds an excellent idea! The news must have cheered you up somewhat, and you have a plan to follow now so not standing in the wilderness wondering.

Bluesky123
Member

Re: Recently diagnosed and terrified

Hello everyone,

I've had the result of the MR scan - this was clear other than the one mass we know about.

FISH test was negative and so it's HER2 negative, ER and PR positive. Started Tamoxifen last week.

This news made me feel a little better, and I've even managed to do some food shopping today - treated myself to flowers also, I reckon I deserve it considering all this stress!

EAM28
Member

Re: Recently diagnosed and terrified

Hi macky,this waiting & not knowing what the plan is really is the hardest part I agree & remember it well! Its hard not to think the worst but like a few ladies have said - there are lots of different treatment for each type of cancer - they will tailor it to you. If it is her2+ there is herceptin that they will use that locks onto the her2. And you are already on the tamoxifen for the er+? I was DX end of Jan with grade 3 invasive ductal - 6xchemo,herceptin for 1 year,3wks of rads & tamoxifen for 5-10yrs is my treatment pplan. Hope they can give you all the info you need next time - it is so much easier to work through the treatment once you know exactly what's happening! Good luck xx
Bluesky123
Member

Re: Recently diagnosed and terrified

Hello again, thank you all for the the replies, information and support, it does help to read of others in similar situations doesn't it. I'm still waiting for the result of the MR scan and the second HER2 test, I'm desperate for the results. It's 4 weeks today since the referral from my GP and I don't yet have a plan or a date for surgery, things are moving so slowly which worries me greatly - all I can think about is wasted time and it having more time to reach the lymph nodes if it isn't there already. The delays are excruciating. Macky

Alexa2623
Member

Re: Recently diagnosed and terrified

Hi Macky

So sorry about your diagnosis.  The fear and terror can be overwhelming, but they do fade in time.  I know, I too have invasive lobular cancer, it second time cancer for me. And I have a heart which is too weak for surgery at the moment, though I am on tablets to try and strengthen the heart.  So I do understand fear and terror.  We all go through that stage.  When your treatment starts hopefully you will begin to get a bit of a handle on things.  Try and give yourself little treats, even if it is watching rubbish telly and eating chocolate! All of us here are in the same boat, and there is a lot of help and understanding here. 

Love 

Alexa

 

Jo1
Member

Re: Recently diagnosed and terrified

Hello Macky,

 

As others have said, it's all very very frightening for everyone at the start and the thoughts pop up at other times too, especially in the night.

 

I was diagnosed almost 2 weeks ago - similar to you, lobular cancer, oestrogen receptor 8/8 and progesterone receptor 8/8. I had big panics at the start, others at various times and another big panic when I saw those numbers on my copy of the letter to my GP yesterday, when friends on here helped me to calm down again. I had my MRI scan last Wednesday, so we seem to be similar up to now. I won't know the result of the MRI for a couple of weeks yet, when I see my consultant.

 

Others here have helped me tremendously, they are such a lovely group of people, and many are ahead of us in the journeyin this terrible club nobody wants to join. They have a very calming influence on me, and they are realistic as they've been or are going through it all - not platitudes which well-meaning friends might come out with.

 

I'm finding my little bottle of Rescue Remedy is a help - it has been before and I've a few bottles around the house/in my bag. It's better than getting onto the alcohol! Try to relax a little Macky - so hard to do, but shoulders down and deep breaths can help when not actually in the middle of a panic. We're all here for each other Macky, so we're here for you.

 

Love and hugs, Jo

Sisterjayne
Member

Re: Recently diagnosed and terrified

Hi Macky , you are jumping to conclusions and this is making it all so hard for you , we all get negative thoughts, especially when we are first given the news , I know I have ached from my head to my toes and each time I have a twinge I think it has spread to the area , then I wake up the next day, the pain has gone in that spot and its somewhere else, my sister is a breast care nurse who has had bc herself and she says that this is so normal to feel negative but you must try and think of the facts they have given you , one tumour , grade 2 , clear nodes on ultrasound ,to me , that sounds positive and although they need to check you out it will be fine ,so try and take each day at a time . Believe me I'm on my own journey waiting for my surgery and I can't believe anyone is as scared as I am but I know they are , so take a big , deep breath, try and get a bit of normality back in your life, try and keep busy ,it will help you to cope with this .you will beat it !! Lots of love Jayne ,sorry to use your thread Mary , didn't realise till I'd written this xxx
mary32
Member

Re: Recently diagnosed and terrified

Hi Macky

 

I didn't know lobular was always grade 2 but yes, mine was grade 2 and stage 1.

 

The second test for HER 2 came back negative, so only on tamoxifen.

 

When do you get the results of the other tests? The waiting is very hard.

 

Mary 

Bluesky123
Member

Re: Recently diagnosed and terrified

Hi Mary,

 

The Consultant has said that all lobular cancers are grade 2, and that the stage can't be determined until after biopsy of the nodes, which will be after surgery.

Did you say you were HER2 positive?

 

Many thanks for your replies x

mary32
Member

Re: Recently diagnosed and terrified

Hi Macky

 

Sorry, I missed your reply just now. I know how you feel about the mri, the idea that it could have spread. I was in such a state by the time the mri finished they had to manhandle me off the machine because I was weeping.

 

I too was started on tamoxifen before wle. Do you know the grade and stage yet?

 

Mary

mary32
Member

Re: Recently diagnosed and terrified

Hi Macky

 

I was diagnosed with invasive lobular breast cancer last June. I think the statistics for lobular that are out on the web are quite out of date and the prognosis is much better these days. My initial HER2 test came back inconclusive so they then did the FISH test and it came back clear. I was strongly ER+ though. Having a hormone responsive cancer is good because it means that there are more treatment options available.

 

Until you have a full pathology you will not know the full treatment plan. You may also have an MRI scan to check the rest of your breast and the other side.

 

It is very hard to get your head round and I spent a long time not really believing it and wanted to go back and ask 'are you sure?'.

 

I went on to have the BRCA gene test because of a family history of bc. Then I had a wide local excision (lumpectomy) in September and radiotherapy in October. Now on Tamoxifen.

 

Do ask anything else as all the ladies here are so wonderfully helpful and knowledgeable.

 

Take care.

 

Mary

Bluesky123
Member

Re: Recently diagnosed and terrified

Thank you all 3 for these replies.

I've had so far - mammogram, ultra sound (foloowed by core biopsy ) - both of which showed the one lump which I'm aware of and confirmed to be lobular cancer, and nothing was seen in the axilla.

However I have been told that lobular cancer can be elsewhere in either breast and not show on these initial scans, and so have had an MR scan ( both breasts and axillae ) which will be followed with more focused ultrasound. I'm terrified that this may show other areas. If it does, I may need further biopsy.

ER+, possibly HER2+ - all feels awful.

Tamoxifen has started.

I will be having surgery, whether lumpectomy or mastectomy is advised will be dependent on these other scan/test results. I'm told that SNB is likely at surgery also. I understand so far that though nothing has been seen on images so far ( excluding MR as I don't have that reslt yet ) there still may be micobiological changes in the nodes.

I'm filled with dread at the moment.

I can't face surgery, nor any other treatment.

My whole world has changed and I'm not coping. Been in hiding in bed since the MR scan.

I know I'm very negative at the moment but I can't see anything to be happy about.

keeks
Member

Re: Recently diagnosed and terrified

Hi Macky welcome to out horrible litle club.

 

I know you feel devastated by your news, we all do, so we know how you feel, every cancer is different so until you know just what you are dealing with looking up loads of info just freaks you out.  The stats you read are too general, as there are so many different factors to consider,  when all the info is in and you have your treatment plan you will know exactly what you are dealing with. If you want to know the prognosis your doctors can feed all your details into their computer and give you the stats based on your individual circumstances. 

 

it is a lonely journey, but we are all here for each other to answer questions, and offer support on the bad days. I know you can just see cancer just now but it's not what it used to be. Yes nothing will every be the same, and you will grieve for your life before, but the treatment is very doable.  And you will come in contact with some truly amazing people who only want to help you.

 

I was diagnosed at the end of Jan and have already finished my treatment apart from hormone therapy. You will get there with lots of help.

 

keep posting and take care.

 

Keeks

 

 

Sisterjayne
Member

Re: Recently diagnosed and terrified

Hi Macky sorry to read about your new diagnosis and how terrified you sound having this news , believe me when I say that we are all here to support you through this and we all know exactly how you are feeling at this moment in time. I'm still waiting for my surgery on Tuesday so I'm very anxious about what's to come , I was diagnosed over 2 weeks ago now with invasive ductal and every day since then has seemed endless, this site has been such a comfort to me and the ladies in here are so supportive ,and caring, . One thing that I'm sure you are feeling is that although you have friends and family who love you and are supportive you feel very alone and on this site you just can't because we are all on this journey with you, some of us have moved ahead with our treatment plans, some like me just waiting for surgery and you are still shocked at your diagnosis and waiting for your results. The thing is , don't read up on too much because what you have to remember is that bc is very curable these days and whatever type you have they have the right treatment to sort it out , we all need different types of treatments depending on our diagnosis but ultimately whatever treatment plan that you are going to be given will be the right one to get rid of this and beat it so you can move on with your life. So try and take each day one at a time and try and think positive , as the days progress and you have your plan you will feel better ,but use the site to help and support you because we are all here for you to help you through this ,sending you lots of love Jayne xx
Jo_BCC
Member

Re: Recently diagnosed and terrified

Hi Macky

 

Welcome to the Breast Cancer Care discussion forums, you've come to the right place for some good, honest support from the many informed users of this site.

While you are waiting for replies, I have put for you below links to some of BCC's publications you might find helpful. Also our helpline team are just a free phone call away, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2 (Due to the Bank Holiday the helpline is closed this coming Monday)

 

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/invasive-lobular-breast-can...

 

http://www2.breastcancercare.org.uk/publications/benign-breast-conditions/lobular-neoplasia-bcc126

 

Take care,

Jo, Moderator

Bluesky123
Member

Recently diagnosed and terrified

I have been told I have lobular cancer, invasive I think, oestrogen receptor positive, HER2 "middle" and so am waiting for the result of more testing on the tissue sample. I read that this type of breast cancer has a poorer prognosis and that cancers which are HER2 positive are faster growing and more likely to spread. I can't see anything ahead of me other than cancer cancer and more cancer.