Following my single mastectomy I had my first appointment with my oncologist yesterday. No radiotherapy or chemo required but Letrozole for 10 years.
She gave me a prescription for the medication plus vitamin D and Calcium supplements. She also ordered a bone density scan.
She said she would phone me in 3 months to see how I am getting on with the drug then would discharge me with repeat prescriptions from my GP if all was well. In the information leaflet she gave me it said regular follow-ups for the duration ie 10 years, regular blood tests and to phone the contact number in the event of side effects that were worrying. There was no contact number.
Is this normal? Do others have regular appointments with their oncologist. Who is now my point of contact? My surgeon said that I would be under the care of oncology with annual follow-up appointments and mammogram with him.
I am on exemestane and advice in the leaflet and on the nhs website regular blood tests to monitor liver function etc. I queried that with the oncologist and she said they dont bother with that. Found it a bit disconcerting actually
I am also on letrozole. I have been on letrozole for almost 5 years now. I see my oncologist every six months and once a year bone scans. Also blood work every six months . It’s just part of the healing process. I am a 2x cancer survivor. So far I am doing very well. I hope you too are doing well. You will most likely see your Oncologist for routine exams. I wish you well.
I sometimes wonder if it is a postcode lottery when I hear that some people still get regular exposure to oncology. I am in London and I had the first meeting with the oncologist (actually a registrar so quite junior) one month after surgery (prescribed rads and Letrozole) then a 3 month telephone call with the same registrar to check on my progress with Letrozole. After that call, I was discharged back to my GP who organises the DEXA scans and repeat prescriptions but I get annual mammogram appointments from oncology and I can call the breast cancer nurse who works for the oncologist any time if I suspect spread. I think it is quite usual to be discharged back to the GP once active treatment is over.
I did request another call with the actual oncologist after a year as I had a list of questions which had occurred once my mind had started to think less emotionally about the diagnosis but it was made very plain to me by tone of voice that the answer to every question was “we don’t actually know the definitive answer to that so there’s no point in asking”. I got the impression that their limited resources are very much focused on women with secondaries, probably understandably.
The oncologist I’ve seen is my radiotherapy oncologist but he prescribed the Anastrazole . Hd will see me in July , post radio and then sign me off .
I see surgeon in October .
My treatment has been private .
Nobody has suggested blood tests to monitor side effects but I have a sympathetic nurse at my Gp surgery who , because I also have an underactive thyroid , which will be affected by the lack of oestrogen , will check my bloods . Because of my age and thyroid , I can have them every 12 months anyway . So, I’m going to arm her to run full bloods every year .
I have been on letrozole for 2 years now. Bone density test at the start of it but no contact from oncology since. They did make it clear I could ring the breast care team anytime if i had issues. Just mammogram for next 5 years. I am just getting on with my life unless anything crops up xxxx
I wondered about this too as I’ve heard of people on Letrozole getting bone density scans and bloods.
My experience is that I started on Letrozole 4 months ago after being on Tamoxifen for 2 years. It was a straight switch after a brief chat with my nurse who had briefly got it okayed with my breast surgeon. I’m on repeat prescriptions from GP. That’s it, I think they’re done with me unless anything major crops up!
I too am wondering about postcode lotteries here! I’m in Cheshire West.
The different experiences we all have leaves me thinking that whilst there’s some common threads to the treatment some things seem a bit random depending on where you are and who you get to see.
I’ve never seen an oncologist. Just the breast surgeon (very lovely) who did the mastectomy end of January and then in a follow up consultation told me the MDT (multi disciplinary team) which includes an oncologist had discussed my case (I’m Lobular, 2 tumours grade 2, 0 lymph, ER+ve, NPI 3.4.) and they’d agreed that no chemo or rads needed, but Letrozole for 5 years. I’m 65.
Letrozole is proving a bit challenging (usual side effects) but am persevering, just in my 4th month and hoping it will settle.
I’ve had a Dexa bone scan which counts as my baseline and and am told I get another one in two years. I also get annual mammograms for 5 years then back into the normal system. No one’s mentioned bloods or liver or any other monitoring.
Next month, I have my “end of care” appointment with the breast cancer nurse and am told I’ll then be on a programme of “self management”. Which as far as I can tell is a chat telling me to look out for lumps and come back if you find one.
I’m Lobular so do want MRI not mammograms as lobular doesn’t show up on mammograms (it didn’t this time) and I do want to talk to an oncologist about the Letrozole benefits/options etc. As things currently look I think I’ll need to go private to get that.
The impression I get is that the health system is brilliant at sorting out the cancer problem and treatment for it but the follow up stuff is more down to me to be vigilant and wait for something to show up. I’d prefer things to be a little more proactive than that .
I’m going to see what/if anything comes of the end of care plan and then take it from there.
in Bucks, the treatment is followed up by appointment with oncologist, and whatever treatment, chemo or anti-hormone and RX. I missed to on the RX as I asked for a second opinion, as mine was very early, and hormone + and it was over Christmas 21. I had awful SE with Letrozole, so changed to Exemestane, which is much better tolerated. I am now 79, so for me it’s QOL not length! I have open access to the breast team for 5 years, so roughly until Jan '27, including seeing an oncologist if need be, plus mammo’s each year-but I will ask for an MRI as my dCIS had 2 foci-2mm and 12mm and only showed on the mammo as white dots- elective mammon’s as too old to be on the schedule for screening. I took HRT for over 30 years and would go back on it tomorrow if I could!
I have been dealing with an NCI linked cancer center. They assign you a Nurse Navigator that I can call any time I have any kind of issue. They also have an online portal where nurses screen your emails, and if they deem it needs to be seen by the oncologist they pass it on. I just reported worrying Letrozole side effects last week and yesterday got a call from a nurse asking if I wanted to see my oncologist sooner. You need to be followed by a medical oncologist, and if you don’t have one, insist on seeing one.
Hello everyone, it is rather worrying to hear things being done so differently when all should be following nice guidelines and standard protocols. I am having blood tests for cholesterol, calcium and ferritin but i arrange through my gp as oncologist said they dont do this. It does make me wonder why oncologists bother to ask about and record existing health conditions which can impact upon or be impacted by their prescribed treatments and then never refer to
this information again let alone consider any monitoring. Love to all from a disgruntled Tulip x
I have an underactive thyroid , which wasn’t well controlled . Just before my diagnosis , I’d been to see an endocrinologist as menopause hadn’t been great .
Hormones interract, reducing oestrogen ( originally menopause and now Anastrazole ), will impact my thyroid but the oncologist didn’t seem concerned . Luckily , I have a sympathetic practice nurse who said she will do blood tests for me .
The oncologist’s job is to stop your cancer
Hi Holly.52
I experienced exactly the same. Right mastectomy on
01 September 2022. I was told I didn’t need chemo or radiotherapy. One follow up visit with my oncologist, during which I asked if I should make another appointment for 6 months time. I was told there was no need to, as all my lymph nodes were clear. She gave me her card and said to call her any time, should I wish to see her. She gave me a prescription for Letrozole and Evacal D3, for the next ten years.
I also have a six monthly intravenous infusion of Zoledronic Acid, prior to which, I have blood tests for AKI Score (kidneys), Renal Profile, NBONE (bone). No mention of any tests for my liver.
No mention of any follow up scans either.
So on my merry way I go, hoping and praying that it doesn’t return.
What else can you do?
JennyWren
