Hello! I would like to know how often I must to be investigated by CT or something else exscept mammography.How often do I need to see a breast surgeon or somebody else responsible about me.Since last JUNE I have not been appointed NO tests and investigations, except mammography. I’m only 1.5 years post-op. Is it normaly or not?
Hi
I’ve never had a CT scan or any other sort of scan to look for secondaries and, unless I get some untoward symptoms, I don’t expect to get one.
Think it depends on your hospital policy and whether you had any node involvement, etc.
Dx
The frequency of follow-up appointments seems to vary a lot. Some hospitals in UK offer no follow appointments in outpatients, after treatment. Others routinely see patients on a regular basis.
My understanding is that it is pretty standard not to have routine CT scans after breast cancer treatment in UK unless there is a clinical reason for doing so. I know CT scans are offered more routinely in some other countries.
As mentioned by DJ007 it would also depend on node involvement, stage and grade of the cancer.
My hospital generally offers mammograms on a 2 yearly basis for 10 years post-treatment.
Personally I had mammogram, ultrasound, CT, bone scan and lumbar spine x-rays before my op. Post-treatment I started on 3 monthly check-ups in outpatients, then 6 monthly. These appointments alternate between the oncologist and the surgeon. I have annual mammograms and breast MRIs.
Could your Breast Care Specialist Nursing Team not throw some light on arrangements in your case and your area?
On the nhs if you have primary BC only it’s unlikely you will get any scans other than an annual mammogram (or in some cases Mammo every other year) this is usually for 5 years or until age 50 but some areas will do mammos for 10 years.
You should get at least an annual clinic appointment for 5 years.
If you develop any symptoms your worried about speak to your team and if it’s felt necessary they will organise any scans they feel you need but most people will not get further cancer and scans are there as diagnostic tools anyway so are there to look for cancer not to help you feel reassured… Even if they did scans I’m sure people would feel they would want them more often…
Also a negative scan with no symptoms can give false reassurance… It can be so hard to trust your body again but in time I’m sure you will get to trust it again.
Lulu
Just to say that my hospital carries out annual mammograms and also a routine CT scan even for primary BC with no lymph node involvement. I had my surgery in April and then a CT scan in June last year.
I do know that the area I live in offers a very high standard of service to all of its NHS patients, and not just cancer patients so maybe it is yet another instance of the post code lottery?
Thank you girls!
Yes, in several other countries are doing CT scans. In Latvia in all hospitals are common. They are doing every three months US(liver,kidneys, pancreas etc) - due 2 years, every year bone scan - during 5 years and if need PET as well. Mammography they are doing different - on “good” breast after treatment every year until end of life and US 2x per year as well. Even after mastectomy they are doing mammogr on same side (to check up muscle).
I did some training in France,Italy and Russia (Moscow).It was very interesting - in Italy I saw hospital where mostly of investigations are done in same day.In the mornig appoitment with breast surgeron, then mammography, US, if need biopsy and in the aftenoon when tests are rady back to surgeron. Same hospitals in LV also are going to do like this. In France also is something similar.But in Russia is same as in NHS - in same districts there are very high level of services but in some districts they are doing just surgery, chemo and rads.I think because those countries are very big and for this is hard to manage common standarts. I just worried because before I came back in England doctor sed you will have during 2 years this, this and this, during 5 years …, and all the life … . I asked “Are you sure?” He answered yes, because there are standarts of breast cancer treatment in all world.
Is it possible to change hospital? And how is going the procedure? What I have to do? And how is better to do?
Ou-good news - next week I am going for holidays to Latvia!!! I will see my family, my daughter! She is coming for couple months in England. I would not be here alone anymore.
Hugs xxxxxxx
Lulu 34
What are the simptoms which I have to tell and discuss with doctor? Doctor just asked how are you? He does not ask about pain or something else. I never felt any simptoms. Even cancer I never felt and never ever could to touch him. And doctor could not touch as well. I just predicted in my mind. Without any GP and brest surgeron reference I was requested my shelf radigrapher to do mammography(which did not show any changes) and US which showed my cancer about 2cm. For this it is very hard to believe-my body never spoke to me.I did not understand even what doctor wanted to know - what include how are you?
“My understanding is that it is pretty standard not to have routine CT scans after breast cancer treatment in UK unless there is a clinical reason for doing so. I know CT scans are offered more routinely in some other countries” .
In one way it is nice - don’t need to think about time which need to manage and spent. But different information is coming. For this it a bit looks like a hidden head in the sand.
Some of my English friends did not wait and also did not look for symptoms. Unfortunately, the symptoms appeared just a month before they past a way. And what else - I can not to find any reasson why I must to see doctor because this routine appoitments become pointless without any investigation. It takes just my time and doctors time. Useless wasting public money as well. For this I prefer to do routine investigations and after just go to doctor for explanation.
There are in most areas no imaging or blood tests to look for recurrence as part of your follow up. I am 2 years since my diagnosis and discharged from the hospital. Should I be symptomatic I can access my GP or BCN. The no follow up strategies are based on studies done in the 90’s which showed that intensive follow up did not improve overall survival. This review explains more fully.
onlinelibrary.wiley.com/store/10.1002/14651858.CD001768.pub2/asset/CD001768.pdf
Tina46
Thank you!
I know all this - but I can not to understand why I have to spend my time and see my doctor or nurse??? Just for to see the eyes and to touch my breasts? This is pointlessly than to do CT or something else. Perhaps in some parts of world those old things are coming back. Because different researches are showing different things. Latest one was done on 2010. I remember before 10 years they even did not treate small non aggressive lumps - surgery and lets it. After resherces showed different things. But they are just reserches - after 10 years maybe this all will be rigmarole and rubish. Lots of things in medicine become like this.
What does mean symptomatic??? I am not even symptomatic with tamoxifen and zoladex. My periods still keep going.
The MacMillan website has a good summary of symptoms of recurrence macmillan.org.uk/Cancerinformation/Cancertypes/Breastsecondary/Symptomsdiagnosis/Symptoms.aspxIf you are unhappy with your current follow up, speak to your GP/BCN to see if you can work out a plan that is agreeable to you. Overall the treatment guidelines/follow up schedules are set by NICE and PCTs have local guidelines, too, and clinicians have to adhere to those. NICE guidelines are available to read online and reviewed regularly.
Tina46
Thank you!
I found out - I have just few symptoms - cough and bleeding ( I think they are periods) before 2 days I had an appoitment to breast surgeron and I told him. Just I am no sure did he hear, because he did not give any answer and I was shame to ask again.