Liz, I’m glad you have made your decision to stay with the NHS and are not remortgaging the house. I understand the rabbit in the headlights feeling very well and can assure you it gets easier but it’s something you have to live through for now. The grading isn’t as clear cut as we’d like to think as it’s based on a small biopsy sample and every tumour presents with slightly different features. If you’re a definite for chemo you could have a chat with others on the monthly chemo thread or at least have a look at the conversations. You’ll be surprised how funny some of those posts are. There are highs and lows but you’re never alone in this. Best wishes for your forthcoming appointment.
Thats excellent news. Truly.
My post was a knee jerk reaction because I had made peace with the "early detection" tumour and no node involvment (Or at least the one node they needled was normal) I had expected the grade to go to 3 because a friend who also had BC warned me it would as grade 3 is common in peri-menpausal women.
I didnt see it coming. I expected it to be "off" by a few mms but not that much. I didnt expect every part of my follow up to be bad news...even needing more margins.
I hope like you, one day I can look back in hindsight with calmness and rationale knowing for the most part its behind me or at the very least its no longer going to kill me in the near future.
Right now Im like a rabit in the headlights, too scared to know how many nodes are involved but desperate to hear its not many.
Im not going private anymore because I spoke to my NHS team and they gave me the option to have surgery then chemo or chemo then surgery because had they known it was 42mm and one node involved right from the start, they would have had me on chemo anyway (before surgery)
So they have let me choose. My BCN said it might make finding the margins a bit harder in 6 months (after chemo) but which ever way I do it won't change the prognosis or the bigger picture. I am not sure I agree with that but anyway, Im opting for chemo next. I should get an appt with my oncologist (Havent met him yet) for Friday or Monday my BCN will get back to me with that soon.
Chemo privately is 30K to 40K I was told (and I was shocked) and its no different that the chemo you get on the NHS. So that was never my goal anyway, I only saw the private guy to see if we could get the surgery done faster than 4 weeks. But he recommended chemo as a cautious route incase it was already in my body and lymph nodes because they would have given me chemo after surgery regardles of how many nodes, one or twenty.
If I could have got the surgery done quicker privately we would have done for 5K. It could have been the difference between life or death after all, if it would have cost 80K we would have remortaged the house for the slightest chance of a better outcome and I would do the same for my partner too.
Thought I would let you know that at diagnosis my tumour was just over 1cm in size, and after surgery it measured over 2cm, and was more than double the size that it was initially measured at. The surgeon explained that this is because no imagery could actually see the whole tumour clearly for various reasons including dense breast tissue and smaller areas of tumour just not showing up. Unfortunately, BC is really sneaky and it does appear to have invisible man status on occasion.
Also, I had a further operation to clear margins and this had to take place after I had made a reasonable recovery from the first surgery, but it also has to be done within a certain timescale, which mine was.
Hi Liz, sorry you find yourself here. It’s a very scary time after diagnosis whilst you are waiting for scans and decisions and there is a lot of information to get your head around. I was 48 at diagnosis in March 2017 and mine was a whopper; I wasn’t even given a measurement as it was too diffuse to be measured. After chemo it shrunk to 90mm and then I had surgery and radiotherapy. Sadly I had no option, it was mastectomy only and this has been hard to live with but I’m now waiting for reconstruction. I had to wait about 6 weeks from diagnosis to starting chemo and lived in fear every day but here I am and doing very well. Here’s my story which you may find some comfort from: http://lifeafterlola.com/
I was Diagnosed with Invasive ductal carcinoma in May 2018, I had a 9cm tumour and involved lymph nodes. I had neo adjuvant chemo, for 6 months, 4xEC, 12x Paclitaxal. I waited a month before I started chemo. The tumour did not grow. My tumour was ER+ PR+ HR-. The tumour was long and thin, I had mixed IDC, DCIS. I had a mastectomy in Dec 18, then started Radiotherapy in Feb 19, which finished on the 11th March.
I went back to work on the 15th March, new job, new beginnings.
Today I saw the oncologist who gave me the diagnosis over 14 months ago, he discharged me, and said he would see me in 5 years time. Trust your medical team, be it NHS or Private. My oncologist works privately 4 days of the week, and NHS 1 day of the week.
It would of cost £30,000 to have private treatment, money I don’t have.
There is no morale to this story, however I was in the same situation as you 14 months ago, and I am happy I stayed with the NHS, and the team who saved me.
Good luck and take care
When I went for my initial appointment after my mammogram and biopsy I was told I had Invasive Lobular BC..16mm and my lymph nodes were affected and would be having a lumpectomy, however, after I had an MRI as part of the staging for treatment they discovered my tumour had spiculations growing from it (like a spiders web)extending to 5 cms... The spiculations could not be felt by the doctor and werent seen on two mammograms.. so the tumour was then 7 cm...they hadn't grown in the 3 weeks in between appointments -nobody was aware of it until I had the MRI! The MDT then changed their decision and I had neo-adjuvant chemo and then a mastectomy!
I'm just pointing out that things do change with regards to treatment as further tests are carried out!
Hope everything goes well for you...
Best wishes x 💗🌸💗🌸💗
Mine is Invasive Duct Cancer (I think thats how its described) E+ P- HER2 - T2 N1 M0 (so far)
The NHS consultant added the "so far" on the description she gave wrote down for me to make sure I knew it could get worse as time and treatment progresses.
She told me it has spread outside of the duct but was contained within the breast. But that was based on the scans and now they mean nothing in my mind.
So she told me they need more margins to the outer edge (near the arm) and the under edge and if after this next surgery they still need more margins they may have to consider a mastectomy.
So maybe it's me but chemo seems like the best choice. My private consultant said chemo will attack whats left in the breast plus anything in the nodes (If there is anything) PLUS any that may be in my blood (If there is anything) and then after that he will do the surgery to remove the margins and the node clearance.
So to me that makes more sense than keep on taking me down to surgery chasing margins that are spreading every month between surgery. I don't want to have to keep going down to surgery and I REALLY don't want a mastectomy.
So I prefer chemo first. Things may well change by the time I see him again as by then he will have my scans and info from the NHS hospital
I am going private yes just because I feel the NHS have a lot of pressure and are under funded and I fear I wont get the same consideration or care than I would if I go private.
I know that might sound like waffle and I realise I am lucky I can afford to go private but being told surgery is in 4 weeks after the nightmare follow up is cruel. I don't blame "them" its the system. My BC nurse said "We have NHS targets and we are hitting them" which means nothing to me. I feel I am just one of many and as long as they're hitting their deadlines they're doing their job. Thats not good enough when I personally feel waiting time is a matter of life and death for me.
I haven't spoke to them about going private yet, I only saw the private consultant on Friday gone (Its Monday now) so I will need to have that conversation. I know I need to cancel the surgery and let someone else have it who is already waiting I am aware of the importance of that.
Had they always known the tumour was 42mm they would have had me on chemo straight away to reduce the lump before surgery so thats one "error" if you like, based on the wrong diagnosis. Plus I have a history with the NHS over looking things when I had malignant melanoma at 32 and was sent home after being told "Its just an ageing mole" after I told him I have been using solarium beds heavily in my 20s and I had ginger hair so I knew I fit the criteria for MM to a T.
18 months later it started to hurt and itch so I went through the system again to be told "Its stage 2 malignant melanoma"
Fortunately for me it was superficial so growing outwards rather than down into the skin otherwise I would be dead.
So I basically don't trust them anymore and whilst I was Ok initially with my treatment team, after the follow up then being told I have to sit on that information for another month, I just feel I cant trust them again. I don't feel safe with them. Their deadlines and targets should not be their priority and thats the impression I get.
Sorry I know everyone mostly feel the NHS breast care team are great but I am very underwhelmed so far. The hospital I go to doesn't even have a breast ward, we have to go on a gynaecology ward for the surgery.
Anyway sorry I digress, the private consultant is meeting with the multi disciplinarian team tomorrow to make sure his idea of chemo is the right one and I see him again on Friday to discuss the plan. Even with private it feels slow. I am so scared its spreading as I write this. 😞
Thanks for replying xx
Just to add Liz, have just seen about you going privately in your post & that they’re recommending a different plan. In light of this, has it been discussed with your nhs team & which team will you stay with?
You can always ask for a second opinion.
Most often it's just down to the biopsy finalising the results, so sometimes tumour grade & size can change from initial mammo or ultrasound, as scans may not see the whole picture. Mine changed from grade 1 to grade 2 from the initial biopsy to the final results, although the size remained the same.
From what I've seen here, especially with lobular bc, size can change dramatically, as it can be more diffuse rather than a discrete lump.
From my understanding, bc is not fast growing, but tends to be a slow growing & rather 'indolent,' tumour so I've read, so the change in size is most likely just down to the full picture emerging.
However, I certainly feel for you, as it must have been a shock to get something you were not expecting & to have such a big change to the treatment plan.
Try not to read anything into how the team is presenting to you. In these situations we can become hyper vigilant to any professional expression & it may well have nothing to do with your case at all, but is just one of those things.
I remember trying to read professional expressions, but my fears were never borne out. At my last mammo the radiographer wanted to take another view, so I immediately thought she's seen a problem & the bc is back, but it wasn't, she just wanted to make sure she got a good view of the clips from another angle!
It may also be an idea to post on 'ask our nurses' or ring the helpline if you feel you need to talk things through.
I was diagnosed as having a 24mm lump grade 2 and they needled a lymph node which came back normal. It all looked good
Had the lumpectomy and the sizing had gone to 42mm grade 3 they need more margins and the lymph node they original needle tested was actually positive so I need node clearance.
I am devastated and scared if the tumour has GROWN that much in the weeks between my ultra sound and mammo images to the surgery. The NHS staff say "No it will have always been that size we just couldn't see it clearly as we thought on the images"
So I went to a facebook group for breast cancer and have been told by 2 women that theirs grew from 3cm to 7cm in just 2/3 weeks and they were told this too so one was given chemo to reduce it. Im terrified that the bits (margins) left in there are growing and spreading and my lymph nodes and getting more and more effected....as each day passes..
The NHS say they cannot operate on me to remove the margins and my lymph node clearance until 31 July! (a whole month) So I have gone private and the private team want me to start chemo first and do surgery when chemo is finished.
Now I am learning about oncology scores and chemo and reoccurrences and my NHS team seem very guarded now with me. When it looked all positive they were all "Early detection" "All very treatable" but since my follow up revealed all that mess they're not smiling and look sad and serious and its making me miserable.