How best to advocate for myself

Hi, bit of a long one but feel gaslit so bear with me.

I’ve been having issues with my right breast for about 3 years now. Very obvious wedge to the upper aspect. Pain which has increasingly gotten worse, swollen and intermittently can be hot to touch.

I was fobbed off by my GP for a couple years then paid to see a private breast consultant. He did an ultrasound and said it looked ok.

I persevered because I was still in a lot of pain, and in April had a biopsy. Again, said it was all fine.

Most recently, the pain has spread from the breast into my back and ribs. I have shortness of breath at times with it. Can’t sleep with the pain radiating through. The breast continues to be very pain and appears swollen.

I found a lump when I lay on my side. I saw my GP. She said I shouldn’t have to go hunting for lumps to be suspicious; and that if they were they’d be more obvious.

I’m in a position where I don’t know what to think. This wedge is firm and obvious at the top, the lump is in at the side where the swelling is. I can barely cope with the pain and now the back pain added in it’s grim. I have also been experiencing increased fatigue symptoms too, which mean I’ve had to reduce my hours of work significantly.

Yet, given all these symptoms and being worried, I don’t feel like I’m being taken seriously.

I guess I’m looking for help advocating; something still doesn’t feel right.

How should I approach this with my doctor? What tests should I be looking to have to rule out anything sinister?

I’m mid 30s if that’s of relevance. I’ve been told in the past I have dense breast tissue.

Thank you for reading this far.

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Hi Lyn2020
I am sorry you are going through this and the pain you are feeling. I personally would go for a second opinion with another doctor. You know your own body and this situation would be causing you anxiety which in itself is not nice to have. I would be asking for a scan to be sure. If you are feeling like you are you have every right to get the necessary medical help. I would also get yourself to AE if the pain gets worse as the hospital should do the right scans there and then. Dont put it off keep pushing for answers.
Sending hugs to you and let me know how you go Sister 🩷🩷

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Two issues here. First is you are in pain and have sought help from your doctor. You want this resolved. End of.

Second issue is your understandable fears of breast cancer. Your GP is quite wrong to say you shouldn’t have to go looking for lumps. I was diagnosed with Stage 3 with a 65mm lump that was only visible via mammogram and even surgeon couldn’t feel it. This is quite common which is why the check your breasts technique can be a double edged sword.

You need to insist on a mammogram and, if result is negative, then push for CT scans and MRI. Tell your doctor you want to reassure yourself re breast cancer and then move on to diagnosing your problem.

I would then change my doctor. I am sorry you are being so poorly looked after but I find this more and more the case with our woeful NHS. My experience is that you need to drive your healthcare and push and shove for what you need.

Good luck

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I find it hard to understand why someone would tell you not to look for lumps in your breast when that is what we are all told to do.

If you are having chest pain with shortness of breath I would also advise you go to A+E . Don’t just assume it’s related to your breast you need to be checked to exclude other conditions . In the past I have found NHS 111 to be helpful - you have to wait and talk to several people before you get through to someone who can actually help but they have helped both me and my Dad in the past when our respective surgeries were either closed or didn’t help.
You could also check your temperature and see if it goes up when your breast is hot to touch .

Sending love
Joanne. X

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I can only agree with Joanne. My gp didn’t hesitate when I went.
My biggest tumour was in upper/inner quarter. When I lifted my boobs up I could see a subtle dimple in this area, which we are told to look out for.

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:heart: if it were me, I’d be back at doctors and getting referral to breast clinic and wanting full battery of tests and letting them know that you will be escalating the matter if you are not taken seriously with your concerns and that you will be consulting a lawyer about negligence of you are not referred. Play hardball do not let them keep fobbing you off :heart: you shouldn’t have to do this, but it sounds like you must :heart: I’m only saying what I’d do if it were me, no one knows your body like you :heart:sending :muscle:di let us know how you get on :heart::two_hearts::two_hearts::sparkles::sparkles:Shi xx

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I agree with what Shi said - infact I was going to use similar words.

Talking of words, I always use ‘not acceptable’ if I get a brush off from anyone. I find that works wonders.

Totally unBC, but medically, related I used that when a GP said my problem periods were not bad enough for a referral. I then said that while he (:thinking:) thought the symptoms I was experiencing were not that bad, they were not acceptable to me. One referral made.

Good luck

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Hi,

Its not acceptable to be treated like this. Request a second opinion immediately. Mammograms dont always pick up cancer in dense breast tissue, and it sounds like you have a problem that needs resolving.

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Hi. I am sorry you are going through this. I went to the breast clinic three times before they found my cancer. Firstly, I am absolutely not saying you have cancer, all I am saying is you know your own body and it is worth pushing for appropriate tests until you are satisfied with the care you have received.
I knew something wasn’t right, but twice I was told it was fine (I fully accept that medical equipment is not foolproof so I am absolutely not laying any blame). However, the third time it was found.
I was questioned as to why I was being checked again when I had been seen twice already. I felt almost embarrassed when that was said, but I look back now and think thank goodness I pushed for that third check.
Surely finding a lump is exactly the reason you should be referred for further tests. I would definitely go back to the doctor to ask directly for the referral.
I really hope you get the help you need x

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I just want to say that this is the dumbest thing I’ve ever read in regards to breast cancer. I had a 3.2 cm lump just hanging out refusing to be felt even though I actually did hunt for the damned thing. Every month. But it was my mammogram that caught it. How hard it is to find a lump has no relation to whether it’s cancer or not. In saying that, get a second opinion and perhaps an MRI since an ultrasound gave you no answers.

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Dear Lynn

I agree with all the replies, we have to make ourselves heard in this world now days I would definitely push for a MRI scan.

Wishing you, lots of luck going forward

Biggest hugs Tili :rainbow::pray::rainbow::pray:

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Thank you all so so much for your replies. They’ve really helped me realise I’m being gaslit (which is what I felt), especially being told I shouldn’t have to hunt for a lump because it will be there very obviously if it’s a problem.
I do feel I need to get the courage to call my GP again, they keep telling me I have a chronic pain condition and chronic fatigue but I’m of the opinion that none of those things started until my issues with my breast started, then they all evolved. This has been going on for about 3 years and just keeps getting worse.
I’ve had two breast ultrasounds in that time. The sonographer did validate what I was feeling (the big wedge area) I’ve had a breast biopsy but it showed lactiferous tissue.
I just can’t shake the feeling something isn’t right.
I’ll book in with the GP Monday but also I’m exploring private mri options, they’re about £300 up here, which is an expense I can’t really afford but I agree, I think am mri would at least give peace of mind.

What other tests should I be pushing for?
Are there any blood tests that would be helpful? Not sure if it’s of note but my platelets were behaving funny, and my ferritin keeps tanking every time I come off iron tablets.

I have endometriosis too so I do wonder if they get exasperated with me, as if you can’t have a couple things out of sync in your body at the same time.

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Lyn

I agree with everyone I had a 3cm lump discovered on a mammogram- would never have felt it through examination! I was lucky mine was dealt with promptly and treatment followed. Don’t give up keep pushing for answers x
Sparkle x

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Hi Lyn
If you CAN afford to, go to a private breast cancer consultant and get a safe, reliable MRI done through them. I think you’d be looking at around £1,300. You shouldn’t have to, but it’s the state of our health service and the demand it’s under nowadays. (Myself, I wouldn’t trust the online commercial private companies offering cheap deals, a rash of which are advertising for your business lately.)
Nobody in this thread has spoken of lobular breast cancer, which goes to show it is still woefully unknown about. Again, I am not suggesting this is your issue, but lobular cancer grows in single threads as opposed to forming a solid lump and is thus virtually impossible to detect manually. Mammograms and ultrasounds regularly miss these tumours until they are advanced. I had dense breast tissue, calcification and cysts since my twenties in left breast and all these clouded the issue on scan images. MRI scans have a much better chance of picking up a problem. I referred myself last year originally with a small but detectable lump in the right breast, the well behaved one! That was a mucinous cancer tumour. But my very thorough, diligent and persistent surgeon had the left breast investigated at great length and the 2nd round of biopsies eventually revealed the discreet lobular cancer. Luckily, the tumour was still quite small. Without him though, I’d still be walking around with that flat, slow-growing tumour for a few more years.
Hopefully, you will find a much more professional and sympathetic response next time. I would be ditching that GP pronto! Good luck!

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