Scared newbie

Hi Dels

Have they given you any info from the ultrasound/mammo - size? Lymph nodes looking normal etc?

it’s really, really hard not to think the worst but I just kept repeating to myself that over 90% of women are still alive after 5 years and a very high percentage after 10 etc. it’s usually really treatable. It hasn’t spread unless they tell you it has spread. It’s more likely to be ok than not- by a massive percentage. I don’t mean to over simplify it and I was in a black hole for two months after diagnoses; I still often am, but I promise it gets easier. 

Don’t Google and deal with matters as they arise. 

good luck with everything and this forum is great as you move through the different treatment stages.

xx

Hi Hel39

Thankyou so much for your lovely reply. I’m having trouble recalling anything from yesterday. I do remember asking the question we all ask….am I going to die? The nurse was lovely, she put her arm around me and said no you’re not we’re going to help you. She then went on to explain about different  breast cancers and treatment but I’m afraid it went in one ear and out the other! It’s all dependent on my biopsy results I guess.
I don’t think I can quite remember what the size of the the tumour is. I think it was between 2-3cm. I know a biopsy was taken from my lymph nodes but  I’m not sure if there was a lump there or if it’s standard to take a sample from there anyway. The radiology nurse said don’t worry it’s a tiny lump and made it sound like it was just a case of whipping it out. You’d think I could remember all these important details but I just shut down I think. I’ve tried to call the breast care nurse today but it says due to being short staffed they will get back to messages within 5 days. I think my breast care nurse will have called by then. 

Thankyou for your advice. It’s very constructive and just what I need right now 

xx

Hi Dels, everything that you're feeling is exactly how I felt and it's the waiting between each appointment that is the worse time ever as you feel so alone fearing the worse. I'm much older than you diagnosed at 60 last November following a routine mammogram. I joined a trial called Poetic A, taking Letrozole for 2 weeks prior to the operation to reduce my progesterone.

I'm 3 months post op tomorrow, I had a wide local excision and two lymph nodes removed followed by 5 sessions of radiotherapy. I think I've gone through every emotion under the sun. It's the biggest and scariest roller coaster I've ever been on. But there is fantastic support in this group that none of us would have chosen to join voluntarily.

I just want to wish you all the very best at the start of your journey, I'm getting through to the other side now apart from some very teary days for no particular reason. You will get there it will just be very hard but take each day as it comes and be kind to yourself.

Love and hugs xx

I didn’t remember anything from my first appointment either, except for crying.

if you call your breast care nurse with a list of questions, they will go through it all again and you can write the answers down. Hopefully the biopsy results will be through soon and you’ll have a treatment plan through, which does help psychologically. X

Hi, last September I was where you are now. I was diagnosed with a large cancer that had spread to lymph nodes.  The emotions and waiting for apppointments is the worst.  I felt I had plummeted into my worst nightmare at 48 years old.  Following surgery   I have 1 chemo left and radiotherapy.  There seems to be light at the end of the tunnel.  I wont pretend this journey is easy because it isn't but you will get there, it's just early days for you and you will be in shock with the news you received yesterday.

Take care x

Firstly, welcome to the club that no one here was looking to join.  Everyone here knows the emotions and the mental gymnastics you're going through because we've all been there and are still going through it ourselves.

I totally get where you're coming from.  Diagnosed the day before my hubby and I celebrated our 30th wedding anniversary late September last year.  I'm 54yo, the same age my mother was when she had a mastectomy following the exact same diagnosis (Invasive Ductal Carcinoma HER2 negative).  I have a 13yo son, our only child and a miracle at that (I'm PCOS, so theoretically, without major intervention, falling pregnant was a miracle) so was terrified he would be growing up without a mum.

I was swallowed up by dark thoughts as my mum's surgery and treatment was so radical and savage on her and took her from us just 6 years later.  My BC nurses and my surgeon just kept reassuring me that medical science, particularly in the field of breast cancer surgery and treatment, has improved in leaps and bounds in the last 20 years:

• My mum had a radical mastectomy (everything removed including all her lymph nodes) versus I had a lumpectomy and sentinel node removal (nodes closest to the cancer);
• My mum had radiotherapy that was over the course of 6 months whereas now it's a 5-day course and not as harsh on the body;
• My mum took some really nasty chemo meds that had her extremely ill between doses - I take one tablet per day for the cancer and one for the hormone blocker (Palbociclib and Letrozole) and other than menopause symptoms, particularly hot flushes and night sweats, because of the halt on oestrogen production, so far I've not had any other side effects.
• My cancer was found to have metastases on bone whereas my mum's went to her organs, so while like her, I'm not now curable, it is totally manageable, and new meds are being released frequently to tackle all kinds of secondary (metastasised) breast cancers.

I keep telling myself "this too shall pass".  I am still planning to be at my son's graduation from university (he's just started academy this year, in S1).

You'll feel much calmer once you know what it is, and the plan your team will put in place to have you best fight and beat it.  They want to help you beat it too - your BC nurses will be so knowledgeable and I found them to be a lifeline in being able to explain things in layman's terms.  No question you ask will be 'stupid' in their eyes.  They know you've not been through this before, so start making your list of questions for when they return your call.  As others have said, the wait between tests and answers is sometimes the worst part.  Once you know your enemy, it's easier to fight it.

Sending you all the love and prayers for peace I can muster.  Take care, and I'm sure we'll 'chat' again soon.

Kathryn. x

Hi Kathryn

do you mind me asking about your bone mets? Was this at diagnoses? I only ask as I have positive nodes and am eR + HER2 neg, like you. My cat was clear but they haven’t given a bone scan despite me saying I gave pain in my hips, tailbone and jaw. I can’t understand why they are saying spread isn’t likely when I can see on this forum that people have spread to bones. My CT didn’t go lower than liver or higher than lungs so they can’t know about these areas. I’m confused why they are so reluctant to scan to check. 

Thank you x

Sorry, I’ve just seen it’s all in your bio. 

thank you 

No problem at all.

I had to go back for an axillary node removal 28 days after my lumpectomy and sentinel node removal as the 4 nodes initially removed all had cancer cells.  Of the additional 10 removed in the axillary (the remainder under my right arm), only 1 had cancer cells, so with a 5 out of 14 score, was sent for a CT to see if it had spread further.  All my organs were clear (phew!) but there was a 'fuzzy' on my lumbar spine. I had surgery when I was 12yo in 1980 for scoliosis fusing 5 of my vertebrae so we had all hoped (my surgeon included) that it might have been scarring on the bone from that showing on the CT.  They sent me for a full body bone scan to be sure, and that's when it was confirmed that I have metastases on my spine, pelvis and one of my ribs.  I've lived a lifetime with back ache, so it's nothing new for me - I've also always had a 'clunky' left hip since having my son, so again, didn't notice anything different.  Also, a rib was taken as bone graft at the time of my spinal surgery, so my rib cage has always been a bit sensitive - again, I wouldn't have known any different except for the bone scan.

They're not sure when the cancer metastesised - whether it might have been pre or at the time of diagnosis, or during my 1st or 2nd surgery (nothing on ultrasound to indicate at diagnosis there was cancer in lymph nodes so no biopsy taken - just 9 taken from the lump).

Thanks. I likewise had a four week wait for surgery then a five week wait for the ancillary clearance. I am now three months past being diagnosed, still not met and actual oncologist and terrified how long everything takes. At least another 4/5 weeks until chemo starts and don’t have results from node clearance yet. X