Still no direct answers

[Nantobryce]

I had a fifth PET/CT scan this past May to check on any possible recurring breast cancer. All that the oncologist called and said was I had a right kidney stone that could possibly be blocking my kidney. (Turns out it was in my ureter and must’ve passed itself). I asked what else and he said that was it.

Since being diagnosed with first inflammatory breast cancer then told it was a typo, it was actually stage 3b invasive ductal carcinoma after a lumpectomy in December of 2017 and them insisting I rush into dense dose chemo, it’s been a nightmare of a different kind. I’ve had 4 breast MRI’s, 5 PET/CT scans, 3 mammograms, and 3 ultrasounds. I’ve only seen the words on these tests, never the actual scans. After I refused the chemo and asked for a second opinion (the surgeon’s friend-a month later) which was the same, the surgeon said she found what looked like a recurrence on the scar line. The punch biopsy was the same as the first one. I went to a dermatologist to biopsy the skin directly next to it and after much asking, found out it said “Squamous Cell Carcinoma” as the diagnosis code. No one would address this.

I ended up getting a double mastectomy, mostly from pressure from family and friends to “get it over with”. And then a chest wall surgery and radiation. After my one year exam, I was told all looked good on exam and I was fine. To return in a year if I thought I needed to. When I asked about NED, he said (this is the second, chest wall surgeon in another hospital) “they don’t always write it exactly that way”. I tried calling the radiologist but was told he only speaks with the drs. I have no idea what to do next. I’ve been told by many people “to just let it go”. Including my rheumatolgist! Has anyone ever had any kind of experience like this? If so, what did you do?

[Happyrosie]

Thank you Nantobryce for sharing your story with us, You’re clearly troubled. If you were in the UK you would have been allocated a breast cancer nurse and would be able to approach her for life. She would either reassure you or point you in the right direction, or find out,

Looks like you haven’t got one.

My second line of enquiry would be one of the specialist charities that deal with this - in the UK I would start with Macmillan.

You say you had a squamous cell carcinoma diagnosed - has this been treated? If not, get this done.

I don’t know what you mean by NED.

Yours is quite a specialised issue so I don’t know if anyone on this forum would have exactly the issues you describe and therefore able to give their experiences

[Nantobryce in reply to Happyrosie]

Thank you so much for your reply. I am at my wits end. Yes, it is very complicated and if it didn’t happen to me, I’m not so sure I’d believe it myself! I cannot “just let it go” as many have suggested. I want and need to know what started from the beginning. There’s more to the story, of course, and not what is written in the doctors or hospital notes. All of their attitudes now are that they want it to just go away. I truly believe there was a big “mistake” from the start and they didn’t expect me to look into as I did. There were also so many discrepancies. I didn’t know at the time, but skin nodule punch biopsies are only used when inflammatory breast cancer is suspected. 3 of the doctors told me that after I asked them. But later in the surgeons notes, she said after reviewing, she was certain it wasn’t IBC.

I guess I am just hoping there is someone out there who has some information about what to do in a case like this. The lawyers will not take it bc these cases are extremely hard to win and very costly. I think it should be reported though.

NED is “No Evidence of Disease”.

The fourth radiologist who read the PET/CT scan told me on the phone “You don’t need any more scans, there is nothing ominous on them”.

No, I haven’t had the Squamous Cell looked into.

I can’t even get one of them to admit it’s on the report! Here in the US I am told that the doctors and medical people will stick together no matter what. I now believe this must be true.

Thanks again for replying to me!

[Happyrosie in reply to Nantobryce]

You’re probably right about the profession sticking together. Please get the SSC looked into - my husband has had several of these and they are always acted on (minor op, local anaesthetic) within a few weeks otherwise they could turn nasty

[KT22]

Sadly it’s not only doctors in the US that stick together. I’m currently in the middle of a complaints procedure for negligence during my late husbands cancer treatment. Keep asking & keep insisting on answers you can understand. Good luck x

[Nantobryce in reply to KT22]

Hi KT22–How does the complaints procedure for negligence work there? I believe this is the type of thing I would like to look into. Thanks.