Hi All,
I was wondering if anyone has been through any additional private checks (scans, blood tests, etc.) beyond their yearly mammogram/MRI they would or would not recommend, please?
For context, my active treatment finished in Feb this year and I had one clear check-up in June. Because I had node involvement (3/18), I’m petrified of a none-local reoccurrence and would like to take some additional steps to help keep an eye on it.
Any advice, please? xx
Hi @Florence_87,
I also had a very big tumor and nodes involvement so I totally understand how you feel…I am seeing my oncologist privately and let me tell you I have to fight for everything as he doesn’t want me to have any tests. I’ve finished 6 months of chemo and 15 radiotherapy sessions in February-April 2022 and was put on Abemaciclib for 2 years afterwards. I’ve still got another 4.5 years of the dreaded Letrozole…
I finished the Abemaciclib this June/July. My oncologist thinks that I had the best treatments possible and if I’ve got symptoms then he can order scans, etc. I am a scientist and I know that the resolution for MRI and CT scans is around 4mm. If something has already grown to that size it will be way too late…so I want to get on the TRAK-ER trial but because I’ve been on Abemaciclib I have to wait untill next June.
https://www.royalmarsden.nhs.uk/trak-er
I am eligible as mine was ER8/PR8 positive lobular breast cancer with 3/34 positive lymph nodes. Check the trial is with the Royal Marsden Hospital in London (Prof Stephen Johnston) but my oncologist is the PI at the Churchill Hospital in Oxford.
Hope this helps. Take care. Xxx
Agree with previous commentator. My oncologist has also said no to more scans and tests because they wouldn’t want to “overdiagnose”. I cant get my head around that personally because surely if there is any metastasis then it would be to my benefit for it to be caught earlier and might give me more time. If they find something that isn’t metastasis then I can get myself referred to whatever other doc I might need to see. I also asked about the TRACK-R trial after seeing someone on Instagram whose blood test flagged increased cancer markers and they were subsequently found to have small metastasis but I got a firm no to that too 
Oh and the yearly mamogram, is only on the unaffected side and you don’t get an ultrasound even though I keep hearing how mammograms alone can miss things. Suffice to say I’m not really impressed with aftercare and feel we are pretty much chewed up and spat out at the end of active treatment
@mun4o totally agree it’s frustrating and my recurrence was only found as I asked for an ultrasound on breast I had the mx in. Otherwise I would never have known! Which is very shocking to me.
How did you tolerate the Abemaciclib? I am due to start this shortly?
Not sure what the tracker trial is but like the sound of more info.
Hello everyone! I was diagnosed in January with bilateral cancer as I had 2 primary tumours, 1 was invasive lobular and the other was ductual. I also had node involvement. I had surgery, February. Finished chemo End of August and Radiotherapy will be finished this week. I saw my oncologist and they said a similar thing that more scans can lead to more worry and other misdiagnosis. It’s so stressful isn’t it! My annual scan will be December and they have agreed that I will always have an ultrasound alongside the mammogram due to the invasive lobular cancer. I’ve had my first Zolodex and about to start Letrozole in 3 weeks which I’m dreading! I’m also starting Abemaclib in January. So while I feel so lucky to be able to have all these drugs to prevent reaccurrence I feel quite scared about how much they are going to impact my life moving forward. You read such awful things about side effects and I’ve tried to reason with myself that most people only will write the bad things not the good things! Any advice re Letrozole or Abemaclib would be so appreciated. Helen x
It was horrendous I am not goin to lie…there is tread on here I started in May 2022 Abemaciclib along Letrozole (check it)…I was lucky with chemo as I didn’t have that many awful side effects but with Abemaciclib 
…I had many so many…saying that you can have breaks and also reduction in dosage…but in the beginning I started on 150mg and I was a prisoner in my own home. The tummy cramps were the worst it was like giving birth every time I was on the loo (TMI sorry) but I hear some women are tolerating it better than others so fingers crossed 
you will be one of those…
Though, I was struggling I persisted as it’s an amazing drug…no matter the side effects I thought it was worth continue with it!!!
Wishing you all the best with your treatment. Take care. Xxx
Hi @KChest I absolutely hear you but what can we do?? My oncologist promised me that he will enroll me on the TRAK-ER when I’ve finished the Abemaciclib and all of sudden no you have to wait another year…??? I also found myself that he is doing the trial, he didn’t have the decency to tell me himself.
And what aftercare there is none we need to advocate for ourselves…
Why do I need to have a mammogram on the breast I didn’t have tumor in? How does this even make sense?? Oh, I am so frustrated and sometimes soooooo angry 
Why can’t I have CT or MRI scans - he told me ‘oh no you can get very anxious if there is anything on the scans but most probably will be nothing’ how on earth having scans will make me anxious?? The opposite is actually true… Honestly, I am struggling to understand!! I am so worried now when I am only taking Letrozole and I had a very big tumor 12.5 cm and 3 lymph nodes involved…and I didn’t even have lump in my breast as mine was lobular BC - I was only 43 years old. How is that even possible to say??
I didn’t have the choice to voice my opinion for any of my treatments but I think we should say what we think at the end of the day it’s our life and our body…
My surgeon didn’t want to remove my healthy breast as I don’t have the bad genes and now I have to go for a mammogram every year for 5 years?? Again where is the logic here…?? Please help me understand lovely people on this forum…
Hi there,
I’ve paid for private ultrasound in the past and I intend to again. I had a small grade 1 Er+ HER2- almost three years ago and had a mastectomy because of extensive DCIS. No node involvement thankfully but whenever I’ve asked to be checked on that side again, its a big no, not needed. I was worried about lumpy areas 6 months after my surgery and they still wouldn’t even ultrasound me. Escalating anxiety forced me to go private and thankfully it was only fat necrosis but even so! How did they know without doing those checks. The private consultant was supportive and said I was right to get it checked more thoroughly.
My local breast unit have washed their hands of me apart from yearly mammos on my remaining side. You’d think whilst you’re in they’d just do a quick check on both sides after BC but they won’t!
I’m thankful for a very supportive GP who is actually sending me for a thorax CT scan because I’ve had a cough since February. Breast unit aren’t interested and say it’s probably reflux - I hope they’re right! I am at least finally getting a long awaited scan on my chest area but it’s not to check my boob! Hopefully if anything is there it’ll be picked up although I realise MRI would be better. Given my history I’m keeping fingers crossed they will be super thorough checking the CT scan. Feel really anxious actually.
All the best.
Hi I totally get what you are all saying. I’ve had exactly the same experience. My friends are astonished when I say there are no other checks other than a yearly mammogram on my remaining breast. It sends you crazy. Why can’t they give us a full scan? I’m now 4 years after surgery (yes, all mixed in with the onset of the UK getting covid) and 4 years on letrozole. I try and not think about it, but as you will all know, it never goes away. Every cough, every ache, makes me anxious.
My experience with letrozole was excellent.
I have had it for 10 years. It was no problem. Side effects were so limited I didn’t even notice.
I hope you will have the same success with it.
It’s nice to read some positive posts it’s very scary when you are about to start some drugs and hear how bad it can be!
I too have been on Letrozole for nearly three years with no problems other than vaginal atrophy associated issues. GP prescribed vaginal estriol for that which appears to have sorted things.
I have also had Ribociclib for 1.5 years and that was very much ok. 
Bear in mind that there are lots of people doing well with letrozole and the ‘-ciclib’ drugs, the representation on this forum is not likely reflecting the positives as happy people may be less likely to post.
So definitely try the drugs and have a positive view with it. If you have side effects they can often be managed (otherwise they wouldn’t offer them) and if not other drugs may be available.
Warmest wishes and hoping you do well with the new drugs.
I can only add a tiny bit of information. I was told that because anyone who had any BC has an increased chance of developing another BC in the same or other breast, and that BC could be a different one.
That’s why I was asked to stop.HRT despite it being a triple neg tumour because next time it could be hormone driven.
Hope you get some answers to your other questions. Xxx
Thank you all so much for sharing your experiences… It’s validating and frustrating all at the same time 
My plan is to see a private oncologist to seek their opinion re early detection. At the moment, my ultimate goal is to get a private PET CT done every 12-18 months. It’s ridiculously expensive and you need a referral, but as I had 3 involved lymph nodes, I’m just going to have to find a way.
Hey, when I went for my first mammogram post op/chemo/radiotherapy the person doing it turned around and said “do you normally have that one done as well” I just said yeah, I don’t know cos this is my first! She did do both (I just had a lumpectomy, well I call it a nipplectomy!) But it annoyed me that she wasn’t even aware I was post op. I can’t understand why they wouldn’t want to check where the actual cancer was! I’ve asked about an MRI but got told not unless I get symptoms 
I am roughly halfway through abemaciclib and can honestly say the side effects have not been too bad! I am not really getting side effects from the tamoxifen either. I was more paranoid about side effects that I was stressing and that wasn’t helping. I do still have to watch what I eat, some things play on my tummy. Although one day I can eat something that another day would have seen me sitting in agony on the loo. I would definitely recommend staying away from rich foods in the beginning. Good luck.
Hi all, so re the follow up issues we all seem to have, I had lobular in my right breast, multi focal with node involvement which led to a mastectomy. This was diagnosed in June 2022 after I felt a lump. The cancer wasn’t picked up in my routine mammogram in June 2021 or at the breast clinic after my GP referral.
I, understandably I think, have no confidence that my now annual mammograms will pick up any lobular if it ever cropped up in my remaining breast.
I have asked for MRIs and been told no. I have no annual ultrasound or check of any kind on my mastectomy side which I think is shocking.
I can’t afford private scans but feel we desperately need them especially if the cancer was lobular.
Re abemaciclib, I’m 17 mths in to the 2 year stint, alongside Letrozole and it’s been tough. The diarrhoea and stomach cramps have been quite bad but I’ve managed to stay on the max dose and somehow learnt to manage it with the help of loperimide and a bit of forward planning. Actually if I could do longer than 2 yrs I would, because I fear recurrence so much I’d put up with the sh** - literally 
Good health to you all ladies 
Yes it is very shocking not to get an ultrasound with your yearly mammogram I would try and fight this one or perhaps find another route. I first got an ultrasound as I thought I had raised skin around an area. And the team organised it. Do share your concerns as to how they are monitoring your affected breast, it’s crazy as the recurrence would be more likely to come back there, not the other one which happened me.
Is it only 2 years for abemaciclib as I know what you mean about staying on it? I would be the same. I am due to start it soon so fingers crossed. The challenge is the price of the drug and it’s also a relatively new drug. Be interesting to see what’s happening stateside with the timings. Well done for making it through on the max dose! Worth it I think. And the results are very impressive.
Hope you get sorted on the ultrasound as it would give you more peace of mind. Fingers crossed for you.
I have insisted on USS along with mammogram for my 1st follow up imaging. Whether I’ll be able to convince them year on year we shall see !!!
I have little faith in mammogram as even after I was diagnosed the tumor was difficult to see on mammogram.
On the positive/reassuring side I do take some solace in what my consultant told me “that they are hunting for recurrence” as opposed to “screening” pre BC !!
Hi. I had breast cancer in 2019, had chemo, both breasts removed and rebuild and lymph nodes removed from right armpit. Also had radiotherapy and then on tamoxifin for the last four years. My yearly check ups consisted of a feel/look of my boobs. No scans.December last year I went to the DRs as my arm was swelling. They referred me back to breast care where first they did ultrasound of armpit with no concern. Got sent for a CT scan to be told I had secondary breast cancer in two areas of bone and potentially my liver. Apparently if they hadn’t have scanned I would have been signed off this year as it would have been 5 years since my initial diagnosis. I’m 42 with a 10 and 7 year old. On Ribociclib and letrozole after having ovaries removed. I chose to have both boobs removed at my initial diagnosis as I was terrified it would come back in my boobs I never thought of it spreading elsewhere. I don’t think the aftercare is good enough or the information about potential secondary is strong enough. I was just glad at the time that I’d beaten it in my boobs. Waiting for 2nd scan results to see if treatment is working. My bloods have always been fine for treatment and my side effects are more menopausal then from my medication so fingers crossed it’s good news.