Breast Cancer Now Forum

Hi, I've never really posted much on here before as I'm part of other groups, but thought I'd check the forum out again now I have my new dx.  I had my primary dx last July, slightly ER/PR+ grade 3 IDC, tumour circa 2cm.  I was supposed to have a lumpectomy mid August and the day before the op, the surgeon pulled me in and announced he was going to get me a better cosmetic result, and I'd just have the SNB followed by chemo.  I had been seriously considering not having chemo (another discussion altogether!) and wasn't happy about this.  Unfortunately the surgeon deemed my wishes irrelevant! By the time I had a marker put in at the beginning of September, the tumour had already doubled in size and had felt notably bigger for some weeks.  I had lots of problems with the hospital failing to do things, they botched my genetics referral, didn't book my chemo halfway scan until I chased them, on more than one occasion told me they were too busy to speak to me (!) and didn't listen to me when I told them the tumour was growing.  I had three rounds of FEC and the tumour was fractionally bigger with two new blobs on the edge - I still don't understand how, but these were deemed to be part of the original tumour even though they weren't there before.  I'd requested a referral to another hospital because the surgeon was quite frankly obnoxious, and I wasn't particularly impressed with my SNB scar so didn't really want him doing anything else to me.  My oncologist offered to get me transferred to a different surgeon, but as mentioned already, the hospital in general had been poor (except the chemo nurses who were lovely), so a clean break was the way to go.  My GP surgery dropped the ball on this and hadn't actually sent the referral through, costing me an extra 3 weeks before I got my appointment.  In the absence of an alternative in the meantime, I moved on to tax.  My appointment with the new hospital was on the Friday of the week I'd had my second tax on the Monday.  The surgeon asked a couple of questions and said she best examine me before asking more.  I removed my top, and her eyes almost popped out of her head!  Less than 5 minutes in a room together and she told me no more chemo and we were booking my mastectomy.  You see, my tumour that couldn't possibly be growing on chemo was now substantially bigger and was clearly visible let alone palpable.  My mastectomy was booked for the end of December.  A few days later I also ended up hospitalised with neutropenia and whilst there they swiftly repeated all my staging scans and I had the results before being discharged, there's service for you! When I went for my surgery, the tumour had grown further and it was thought that it would have ulcerated within the week.  Histology showed the tumour to be 9cm and it was described as "well circumscribed, if not encapsulated" and was also now truly triple negative.  I remained node negative - all "oops I took a few more than I meant to" 9 of them!  They flirted with the concept of further chemo, but we all agreed there was no evidence that anything would have any better benefit 6than the chemo I had already been resistant too.  It was also theorised that due to being encapsulated the drugs couldn't get in, and consequently no naughties got out either.  I completed radiotherapy at the end of March.  All seemed great at my most recent follow up in May including normal tumour markers. A few weeks ago I developed a little raspiness which developed into an on/off cough, but read it might be radiation pneumonitis.  I also knew that if I went to the doctor, they would do little more than listen to my chest and possibly declare a chest infection as it had only been 2 weeks or so.  However on Tuesday night I coughed up a bloody lump which of course raised concerns.  It was late already and 111 was a total farce and by 2am I told them I was exhausted and would go to A&E in the morning.  I did, and bloods, chest X-ray and CT later I was being told I have lung mets.  The mediastinal nodes are also affected and one is enlarged and pressing on my heart.  This is all I know right now, and am meeting with my oncologist on Tuesday to find out more. Thankyou to anyone that has survived to the end of my novella! xx ... View more

Hi, I'm just trying to find other people in the same boat as me.  I was diagnosed in July last year with grade 3 IDC ER 3/8 PR 2/8 HER2- so considered triple negative.  At diagnosis tumour was 18x29mm, and I was due to have a lumpectomy 2 weeks later.  The surgeon moved the goalposts the day before surgery, and only did a SNB (negative) even though I had said I didn't want chemo.  The tumour was obviously growing and I felt backed in to a corner because it was so much bigger, and felt forced to have chemo.  4.5 weeks after diagnosis I had a marker put in as they kept insisting it would probably shrink away to nothing - at this point it was about 40mm.  After 3 FECs I felt it was larger still, but my progress scan showed a negligible increase, but there were two new small patches right next to the tumour - they told me they were part of the original tumour!?  I had quite a number of problems with the hospital so had no faith in them and pursued a referral to a different hospital.  Despite my original hospital insisting it couldn't be growing (nobody ever examined me!) my appointment at the new hospital happened just after my second tax.  By then there had been yet more growth and the tumour was clearly visible protruding from my breast.  In less than five minutes the surgeon booked my mastectomy and told me not to go back for the last chemo.  A CT scan just a few days after (apx 7 weeks after last u/s) showed it to be 95mm - not growing my foot!  Pathology showed that it was now ER/PR 0/8 so totally negative.  The MDT were all shocked at such substantial growth whilst on chemo, especially on tax.  I'm looking for people who have experienced similar, as I'm struggling to find any.  My new team want me to have more chemo with carboplatin, but given the scarily fast growth on tax, I've already gone through months of chemo for nothing, and now there's not even anything to measure its efficacy! ... View more

Having experienced a few things in recent years that had extremely low odds of occurring (one was 1/80,000!) and yet somehow they all found me, I'm inclined to think if something is going to happen it will whether you're in the 1% or the 99%.   So although the plan for my treatment has changed to chemo up front to shrink the tumour, I'm still not sure it's for me.  I couldn't give two figs if I lose my whole breast, but what I do care about is potential longterm side effects if I go down the chemo route.   I'm not looking to be swayed one way or the other, but I'd like to know what real life ladies who have been through chemo are living with as a result of it.  I would like to know even from those that have no lasting effects (do they exist?) and no matter how horrific it is, I just want the truth and not the sugar coated version!   I'm also curious to speak to anyone who has rejected chemo.  I appreciate this is a very personal thing and often not a popular decision so feel free to private message me if that's possible on this forum.   Thanks in advance for your responses xx ... View more

I'm having surgery on the 12th of this month, one day shy of being exactly a month since I first found the lump.  Everything has happened so quickly, which to be fair is a good thing.  I saw the GP the day after finding it, and had my first trip to the breast clinic a week later.  They were honest and I left knowing I almost certainly had breast cancer.  The consultant surgeon was on holiday and the consultant I saw said I would come back the following week to confirm the biopsy results, book surgery and have my pre-op, then come back the week after to meet the surgeon.  I saw a different doctor when I went for my results and he was skirting around the subject - to be perfectly honest I'm almost sure he'd not done this before (give a cancer diagnosis I mean) and the CNS led the discussions really.  We had a chat and then I was sent off with a pack of leaflets and my notes for pre-op, and was told I didn't have to meet the surgeon.   My diagnosis was 3cm, early stage (no number specified) IDC, grade 3, 3/8 ER+, 2/8 PR+, HER2 result not in.  Proposed tx is WLE with FEC/T chemo (with he herceptin if +ve) and radiotherapy and tamoxifen.   Out of the blue, I had a phone call at 4pm on Wednesday offering me a cancellation - for the following day!  It didn't take so much thought to turn it down, as I have a 7 month old baby, and I hadn't prepared anyone to look after him and it was incredibly short notice for my husband to be off work.  Then they also told me I needed a full bone scan which hadn't been mentioned before.  Thursday morning I pick up a voicemail that the surgeon does want to meet me and wanting me to go back to the breast clinic the day before surgery.  That afternoon another call booking an MRI.  Over a week after surgery was booked I still hadn't received an admissions letter.  I initially thought it had arrived this morning, but it turned out to be an appointment for a CT scan - cleverly booked for the day after surgery.  I'm taking it all in my stride, but it's all very disorganised.  Two working days left before surgery and I haven't got a clue where I'm going!   The time since my bone scan has been horrible as I've had to limit contact with my son.  My heart broke to have him cry and not be able to just have a nice long cuddle.  Today he refused to look at me for hours and then when he did he wouldn't smile at me 😞   My worries right now are practical ones, of how I will manage with my boy through chemo.  I see people say you manage, and I will if I have to, but being primary carer for a young baby must be a fairly infrequent occurrence?  Not only will I have to contend with being physically weakened, but what about the risks to him from me.  This has only been a DAY of not being able to care for him properly, how will we do months and months?  My husband is exhausted as he works 5.5 days a week, and outside help is limited.  This definitely needs further discussion with the doctors. ... View more