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So many tests

10 REPLIES 10
Community Champion

Re: So many tests

Hi Lizandsarah, I think the tests depend on the confidence of your team who have interpreted your punch  biopsies. I was exactly the same as you, but stage 3 ( now 4). It was felt that an op to remove the ductal tumour and lymph nodes, followed by chemo then rads would be the best way forward . It was explained that a CT scan with contrast would be carried out before rads to see if it had spread . At that point there was no indication from PSA levels that it had. I started my rads but had the CT scan repeated as it seemed poor quality. I actually had tiny teeny lung mets. I believe Lobular cancer doesn't seem to show up well on CT, so an MRI is carried out. You get a Dexa scan after you begin your adjuvant therapy( in my case, Letrozole) as it thins the bones. As I had lymph node involvement there was no question of my having oncotyping as the treatments mentioned above were necessary. Oncotyping is normally done if there is a query as to wether you are borderline for chemo. There are some great booklets on this site which you can download to help you on your journey. I found the one on understanding my pathology extremely helpful.  Hoping this is some help to you. Best wishes. X

Member

Re: So many tests

Hi Lizandsarah, 

 

I’m sorry to hear of your frustrations. I would suggest that you carry on being a nuisance to be honest. When you’re diagnosed with BC, I feel like it is the most turbulent feeling, and managing these emotions are very tough. I brought a book and I was nervous to read it, but I had an appointment at the hospital, so I thought I’d have a flick through. It’s brilliant! It’s called “ The complete guide to breast cancer, how to feel empowered and take control”. It’s by Professor Trisha Greenhalgh and Dr Liz O’Riordan. I would say to read the reviews before you purchase it, I cannot wait to get stuck into it. Here is another website that I found helpful https://dawnwaldron.com 

 

please keep me updated xx 

Member

Re: So many tests

Don’t be worried about the scans and loads of appointmrnts .  Just shows your consultant is doing a great job and wants as full a picture as possible of what is going on in your body.     It does feel overwhelming .     The NHS when it  needs to really moves.   Just take everything one day at a time.  I felt like the hospital pretty much owned me for 3 weeks.  I’ve now had my op WLE ans SLN and it has been 3 weeks of nothing which has also been strange.  I am due to get my results and see what happens next on Monday.  🤞🏻

 

 

 

 

Community Champion

Re: So many tests

Hi Lizandsarah,

Yes, it does vary & depends on the initial diagnosis. 

MRI is not routine. I had an MRI as my initial diagnosis showed lobular as well as ductal bc. Lobular bc does not show up well on mammo, so the surgeon would then request one to have a more complete picture. 

I did not have the oncotype test, but my understanding is the oncologist would order this if needed to see if chemo is indicated. There are criteria for offering it & there is info on the main site here on the test. 

CT scan is also not routinely offered for early stage bc. If your bc is er+, then, from what I’ve seen here, a dexa scan, if needed would not normally be offered until further down the line. 

It maybe an idea to write down these points & get clarification from your team. It is so much to get your head around & will help to clarify things for you. 

ann x

Member

Re: So many tests

There seems to be a variance in what's tests are done. 

I'm stage 2, invasive with lymph spread, grade 2. Also found more tumours in surgery and high grade DCIS. No ongoing plan apart from more clearance surgery untill seen by oncology in five weeks time. No oncotyping done, told if oncology want to do it they can request it (this seems to be linked more to funding when I asked about it, which was no surprise as I've worked in NHS commissioning locally) 

 

I've not been offered any CT, MRI or dexa scans. All I've had is punch biopsy and lymph node biopsy under ultrasound.

 

Should I be asking more questions or asking for more? I already feel I'm being a nuisance when I ring for advice. 

Member

Re: So many tests

Hi Jemima, 

 

Mine has been the same journey, I was diagnosed on the 23rd January though. It is definitely very fast paced and daunting. I thought my appointments was over with, but I got a call today to attend an appointment on Tuesday for my heart. I think they like to move swiftly to ensure they provide the correct treatment. 

 

Keep us updated. Ally xxx

Member

Re: So many tests

Hi All

 

I'm afraid I don't know how to reply to the thread, it looks like I'm only replying to Val.  I meant to say thank you to you all for your advice, it's made me feel so much better.  I think my consultant did say she liked to be thorough and she probably explained the reasons for the tests but I suppose I just didn't take it in.  It just hit me some time later that I was having a lot of tests very quickly.  I wondered why I seemed to be getting the gold standard.  I read that the MRI in particular was very expensive.  I hadn't realised there was an NHS timescale and it was standard for people to have these tests.  Your replies have made it clearer and I'm now a bit less scared.  

 

Thanks ever so once again for the support.

 

Jemima

Member

Re: So many tests

I was in the same situation as you in December , I was told I had BC Dec 19 th , I had pre op next day ( for lymph node biopsy ) had scans and biopsy Christmas Eve , then ct , full body bone scan and mri all before new year ! I was completely overwhelmed with letters from hospitals , phone calls , the fact I had BC and it was Christmas 😬 eveyone said that is the worse bit and they are right ! All the scans are normal , it’s all a rush as they have to start treatment with in a recommended period of time . It’s all very scary but once you start treatment you feel so much better 😄 And chat on here , I’ve found eveyone so lovely , helpful and full of tips on coping with different treatments , good luck x

Member

Re: So many tests

Hi Jemima 

I have the same diagnosis as you, I was Diagnosed in May 18, from Diagnosis to treatment took 4 weeks, I had all my scans booked within a week of diagnosis.

its normal, there is nothing to worry about.

Hope everything works out, I had Chemo, Surgery in December,I start Radiotherapy on the 19th.

your clinical team will take care of you, and do talk to your breast care nurse, when you have questions or just want to talk. 

 

Community Champion

Re: So many tests

Hi Jemima,

Please don't worry, this is quite normal, we're all thrown into this maesltrom of tests & investigations when first diagnosed.

This is to do with improving outcomes for cancer treatment, is NHS policy to do so & so it should be.

However, from our end it feels daunting & is a bit of a rollercoaster ride.

It does settle down & the most important thing is, it all informs the treatment plan so you have the best plan for you to get it dealt with.

ann x

 

Member

So many tests

Hello All

This post is a Iittle similar to the one left by Lotuslil in terms of the diagnositc processes and timescale. I was diagnosed with Invasive Ductal Carcinoma Grade 2 on 25th Jan (Fri before last) and things have moved very fast since then.  The doctor at the assessment centre said that the biopsies indicated that my cancer probably hadn't spread.  My case was then passed to my local hospital.  I rang to inform them of my change of address on the Mon and they rang me on the Tues to make an appointment for me to see the consultant at the new hospital on the Wed at 8.30am.  The speed of this was quite alarming.  Then on meeting the consultant, it was decided that I should have a blood test, bone scan, CT scan and MRI scan. Immediately after this appointment, the nurse suggested I go and have my blood test straight away and book the CT scan also.  I did both of these.  Then the following day, I received a phone call with the appointments for all 3 scans within a week.  I've now had the bone scan and CT scan and will have the MRI scan on Thurs.  I find it quite frightening the urgency with which they seem to be treating my case.  I just wondered if it was normal to have these tests and do they normally take place so fast?  

Thanks.

Jemima