Breast cancer and UCTD

[Narni21]

Has anyone had breast cancer and ctd???I have just had mastectomy early stage BC

No positive nodes so no further treatment apart from aromatase inhibitors. No blood tests or scans done for further involvement. However ongoing and unexplained abdo swelling and pains which are not acknowledged or diagnosed by rhumatologist. ANA always positive ,pattern recently changed to Nucleolar. Could this be cancer metastases or 'just' Uctd? Where would you go from here?

Thanks in advance for any advice

[soul22]

Hi nice to meet you ☺️ that requires tests by a oncologist.Are you discharged from them or having monitoring

Rheumatologist deals with muscles bone pain auto immune conditions

A good one would write to your GP to order tests I'd ask GP for help

Let us know how you get on

[Narni21 in reply to soul22]

Thank you for your reply,I appreciate it .I have been uner a rhumatologist for nearly 3 years UCTD diagnosed and gp contacted them as they are aware of the symptoms previously and gp thought as did I that I was having a flare. Gp thought she would get guidance re that but didnt.

The oncologist gave me the aromatase inhibitors and discharged me...No monitoring only yearly mammogram..The gp has arranged a scan for me now .Knowing that ANA positive can also be cancer or infection I feel I need to know which my pains and swelling are attributed to.and for someone to own it

[soul22 in reply to Narni21]

Your welcome ,glad your go doing something bless you all best

[DogHospiceMom]

I had breast cancer at 36, a lumpectomy and radiation. I wasn’t tested for BRCA until 25 years later after menopause because they didn’t have the gene test yet when I was diagnosed. It was positive and I had a double mastectomy. I have had multiple surgeries since.

[Narni21 in reply to DogHospiceMom]

Thank you for your response, I hope you are stable well and have good monitoring. I think with myself there is a uv link to cdt and breast cancer. I had a severe case of sunburn as a child.There could be a propensity in our family as my sister had breast cancer and my daughter was also diagnosed with bc 18 months ago. I believe she had gene testing and was negative but we have the same cancer profile.Are you diagnosed with lupus and if so do you struggle to differentiate between lupus symptoms and poss cancer recurrance?.

[DogHospiceMom in reply to Narni21]

I do have lupus as well as Sjogrens and MTHFR. I never equated the breast cancer to lupus until recently when I read that someone with lupus wondered if it was connected to radiation. I do have a hard time trying to differentiate my lupus symptoms from Sjogrens but then when you factor in the MTHFR it seems that they all cross over into one another.

[Freckle1000]

Hi. I've just finished up treatments for breast cancer and have SLE lupus.

It is really difficult to tell one from the other.

Just make sure someone organises a scan of your abdomen and both oncologists and Rheumatologists stay on top of pathology tests. You really have to push for this yourself ,especially when cancer treatment ends.

I'm hoping you have a good breast care nurse who can help advocate for you.

Also - next time you see an oncologist - methodically go through how your cancer can re - present.

[Narni21 in reply to Freckle1000]

Thank you for your reply, I hope you are doing well with your recovery I am having an MRI this week ,it's without contrast so I hope it will pick up any abnormalities .I have not been given blood tests by either rhumatologist or oncologist when bc diagnosed and the oncologist has already dismissed me.I am having a private appt with the oncologist mid Sept. So that I can ask questions.that I didn't get the opportunity to.

I will only have a yearly mammogram going forward just for any local recurrence

The gp is the one who has requested this latest scan to help find cause of pain and without her I'm not sure where I would be .

[Freckle1000 in reply to Narni21]

Hi - yep. I tended to only need blood tests to check some deranged pathology when I was having chemotherapy - but no blood tests after radiotherapy. Thankfully my GP did some good follow through bloods. I'm really glad you've got an apointment with a private oncologist - I think that's a very good idea. It's worth looking around to find someone you're really comfortable with, and have a secret second oncologist to double check everything quietly in the background.

After treatment ends with cancer it's pretty disconcerting that everything just stops I've found the follow through afterwards very hit and miss. I was relieved myself when I was able to book an oncologist apointment next week.

I'm doing well thanks 😊 - technically in remission, it's stage 3 breast cancer which messes with the mind a bit. After one and a half years of chemo, double masectomy and then radiotherapy, I'm kinda in a bewildered - what do I do now stage - with some delayed trauma hitting - which is apparently normal, but I feel myself starting to come good psychologically.

One blood test that's optional is

CA153. It's not 100% accurate or a total predictor of recurrence- but its sometimes used as a bit of a guide for it. Praps a question for your oncologist.

X

[Narni21 in reply to Freckle1000]

Many thanks for that,I will ask the oncologist x