Hi,
I’ve been officially diagnosed today with grade 2 invasive ductal carcinoma - I have 2 tumours so will be having a mastectomy followed by radiotherapy and possibly chemotherapy.
I’m having an MRI next week which is fine, but I’m also having a full body CT, I’m so scared as I don’t see many others on this forum having this scan so why has it been offered to me. My surgeon and BC nurse has said it’s normal procedure for our Trust - im so scared they will find something else . From what tests/investigations I’ve had so far there is no lymph node involvement.
Hi Jayne, so sorry about your diagnosis. I was diagnosed recently too. I’m a little ahead of you in that iv had surgery and waiting for chemo then radiotherapy. I also had a CT scan prior to my op and was terrified whilst waiting for results. it was all fine, thank goodness. My breast care nurse said that’s it’s pretty routine following diagnosis and prior to surgery. Hope that helps ease your mind slightly. xxx
Having scans and tests is pretty unnerving and scary but believe you me you are fortunate that your Trust has a ‘belt and braces’ approach.
After these scans you will know exactly what you’re dealing with and the relief will be enormous if they show no spread. Stay strong.
I’ve been begging by BC nurse for an MRI scan for 2 years after they found LCIS in the post op pathology which hadn’t been picked up before. They won’t do it and say I don’t need one. My BC was a small ER+ HER2 - low grade with 2 areas of DCIS but that’s given me no reassurance even after a mastectomy. I’ve had no further treatment except hormone therapy. It didn’t help that my surgeon put into the conversation that even small low grade cancers can ‘play up’. I’m sure she’s right and I’m left keeping my fingers crossed hoping I won’t get a recurrence any time soon. It’s not a good situation to be in.
It seems shocking to me that BC care and protocols differ so much across different trusts. Surely there should be a ‘best practice’ approach across the board. At the end of the day it must be about balancing the books. I just think it’s terrible.
Anyway sorry for the rant! I’m so pleased for you that they’re looking after you so well.
I was also diagnosed (3 weeks ago) and I felt the same exact way but do know that is standard procedure. Before they make a treatment plan for you they need all “the puzzle pieces”. It helped me to let go of control and trust the experts. They are here to save you! I just turned 34 and JUST had a baby so you can only imagine the panic but I’m done with my first round of chemo and let me tell you… having a treatment plan helped my mental health a lot. You are going to be ok! Do you know the type of cancer and stage yet?
I was reading your response and that’s very upsetting! I’m so sorry you are going through that. Have you considered paying for the scan out of pocket? I live in the US and here they won’t do mammograms if you are older than 40 (maybe even older) or you have a medical reason like a lump. I have been telling all of my friends to just pay for it and get it done. To me is a worth investment because it can save your life. You are so lucky you caught urs so early but your oncologist is absolutely right, cancer can come back unfortunately and be super unpredictable so you want to be two steps ahead of it. Wishing you luck and health
Hi, sorry to hear of your diagnosis, I thought I was young at 46! I’ve got invasive ductal carcinoma - two tumours approx 1.5cm and 2cm on the opposite sides of my right breast. It’s grade 2 and oestrogen and progesterone positive. Awaiting my HER-2 result which I should get on Monday, my CT is Tuesday evening and awaiting my MRI appointment although that should be next week as well. Current plan is mastectomy in 6-8 weeks followed by radiotherapy and chemotherapy but these things change. The chemo is not definite at this stage.
You will be ok! Trust the process. In the middle of this awful news you need to learn to enjoy the little wins. The fact that is hormone positive is definitely a good thing and that’s grade 2. I have one tumor 2.1 cm but is grade 3 (hence the reason I started chemo right away). I decided to have a double mastectomy at the end of my chemo treatment so I don’t ever have to worry about my breasts again. I hear over and over again of cases regretting not having a double mastectomy and having a recurrence 10 years later… just something to consider.
Hi there. Yes I have considered paying for a private MRI and I will. They’re pretty expensive to pay for self funding and I’m grateful that won’t be prohibitive for me but I know that not everyone will be able to afford to do this, and we shouldn’t have to.
The NHS should provide best practice for everyone across the different Trusts. It’s pretty clear to me after reading other peoples experiences on here that some people get excellent care with diagnostic scans and some don’t. My Trust is in Cheshire and they don’t! They’ve done the bare minimum.
I’ve already had an ultrasound and second opinion with another breast surgeon but it seems whatever lumps and bumps are found post mastectomy they just won’t scan me. I think it’s because my cancer was so low grade.
I even had to resort to my GP who was sympathetic and agreed to refer me for x-rays. One on my hip due to increasing pain and a chest x ray as I’d been coughing for 3 months. They came back ok but I think we all know that when dealing with BC simple x-rays just don’t cut it. It’s especially worrying that lobular cancer doesn’t always show up on mammograms.
I’m worried and feel let down by my breast clinic who seem to think I’m all done apart from my yearly mammograms for 5 years.
Totally understand your frustrations. Keep pushing and advocating for yourself. You are right about X-rays not being the same as a proper MRI. Our community shouldn’t have to be begging and negotiating to have an MRI when we have already been diagnosed. I’m so sorry you are dealing with this but I’m proud of you for not taking no for an answer.
Wow! I thought that mammograms were a standard for +50 and optional if younger. It can be I have then misunderstood my sisters (in their 60s-70s) living there as well as a friend in her 30s. Have you check through other insurance companies?
It’s understandable to be anxious about an upcoming full body CT scan following your breast cancer diagnosis. Hopefully the responses you have had to your post from our other forums users have been helpful.
You will see from the replies that some women will have a CT scan. Your surgeon and breast care nurse would not say its normal procedure in the Trust if it were not. Its good to see that so far tests indicate there is no lymph involvement. Also, that waiting for scans and scan results can cause a lot of anxiety.
You go on to explain you get your HER2 results today, and your CT scan is tomorrow (Tuesday). Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to more support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK - prefix 18001).
You may be also interested in the range of other free services we offer.
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. From what tests/investigations I’ve had so far there is no lymph node involvement.