Diagnosis still unclear - so worried

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Hello lovely people. I’ve just stumbled onto this forum and feel it’s more appropriate and relevant to me. I went to the GP just after bank holiday weekend in August after I noticed nipple discharge. I was seen in BCU 2 weeks later (mid September) and my world came crashing down when I was told it was definitely cancer, to leave the next Wednesday free to discuss biopsy results and treatment plan. Well one week later I was told - IDC low grade erpositive pr positive awaiting her2 result and that it was 19mm. Initial plan was lumpectomy and possibly radiotherapy.

A few days later I got a call to attend for another biopsy, which left me really worried. When I asked why, I was told they wanted to check calcifications on either side of the lump which made sense.
I attended on 5th October for a vacuum assisted biopsy. It was a horrendous experience! Left me sore and swollen for several days. I returned on 13th to get the results. Apparently one sample was benign and the other was normal but they were not  happy with the result. I was told MDT want to do an MRI now. When I asked why, I didn’t really get a clear answer except that they are just being cautious!

I’d also read the letter they sent to the GP detailing provisional diagnosis which states the size as 55mm! I asked why they told me something different and the consultant tried to explain by saying there were 2 other areas of concern and when added together would add up to  55mm which is even more worrying because if that is the case the original treatment plan/diagnosis is not accurate.

The MRI is booked for the 20th however the results will take a couple of weeks to come back which means my surgery will have to be pushed back, and I still don’t have clarity on my diagnosis.

I feel angry at life. I am angry at the system. I am terrified, not knowing what the future holds… sometimes I feel like “I ve got this” and other times I feel so overwhelmed!

  • My mammogram didn’t pick up my breast cancer so now I have to have MRI every year as well as mammogram. MRI will give them a better picture of what they are dealing with. I know you still have no answers but they are doing everything they can to make it easier for you. Don’t guarantee that it will be just surgery then Radiotherapy. I got told that and after surgery they hit me with 8 rounds of chemotherapy. Now I’m starting 15 rounds of radiotherapy. 

  • Hi Ruva,

    Sorry to read about your recent diagnosis. I was very surprised in the beginning of my cancer journey, I thought that the diagnosis would be the worst part and that the doctors knew what I had and how to treat it, but actually the initial diagnosis was just one piece of the puzzle and there were still quite a few to put together to get the complete picture before my treatment plan was confirmed. It's a very worrying and difficult time when everything seems so uncertain and your world gets turned upside down and it really is such a rollercoaster of emotions and thoughts. However, rest assured that it gets easier when all the scans, analysis and tests are done and you have a treatment plan in place and life stops going at a million miles per hour. 

    Due to my cancer type, I required chemo and had a PET scan before I started to double check for any spread. An MRI or PET is quite common as it gives a more detailed picture of what's going on inside so doctors can have the best knowledge of what they're dealing with. Luckily, nothing additional showed up on my PET, but it was nice to have that reassurance when it felt like my life was falling apart.

    What you're feeling is very normal and the best advice I could give you is to steer clear of Dr. Google as so much information is out of date, and try to stay present in each day and focus on the small steps in front of you rather than the big picture as it can quickly become overwhelming.

    I am just over two years from my diagnosis and continue to be cancer free and I actually feel great as well. I hope that can give you a bit of hope and I have everything crossed for you that you get through this unfortunate chapter in life.

    xx

  • Thank you so much for your responses and they certainly give me some hope. The MRI department had a cancellation on Wednesday so I went in for it instead of waiting until Friday. I guess I’m one step closer. Now I await to be called in for results.