I’m sorry to keep posting but the fear is to much

Worriedasworriedcanbe

Hello and thank you so much for your reply, hope you're okay. I've sent off an application for my medical records, I haven't got a clear diagnosis as they aren't sure what's going on sadly I've only just been allowed a different test (MRI) as I'm paying myself, I had to push so much for that. I'm hoping that'll be able to find the issue. I've taken people with me to my appointments but they don't do anything different, I thought it would help too. But I'm thankful I finally have an MRI referral x

Worriedasworriedcanbe

Thank you for your reply, I'm to young for a mammogram sadly but I've finally got a MRI referral that I'm paying myself, thankfully I've been allowed that now sad as I've been asking for months. I'm hoping it's nothing serious, the fear is always there as it's unlikely but sadly not impossible, I feel for anyone battling this horrible disease it isn't fair at all, I'm so worried I can't live like this anymore, it's taken every bit of happiness away from me x

marijen

Hi Worried,

Will your MRI be processed through the insurance company? Have they already denied it? I wonder if you can appeal if your MRI comes up positive? When is it? That's the main thing. It is unfair to treat you this way because of your age. There are others your age that have BC although the percentage is like very low.

Are you taking anything for the pain. I think the GP should have given you something! How would she like it being in pain like that. It’s maddening.

Worriedasworriedcanbe

thank you so much for your reply and care it means so much, I’m in the UK so it’ll be me paying for it I don’t have insurance and they wouldn’t send me through the NHS sadly. I feel so neglected, exactly I’m tired of hearing I’m to young because I know although it’s rare it isn’t impossible. I’m booking the MRI today as I’ve found a place to do it just stressed having to wait more if it comes back positive I’ll be naming and shaming every doctor that got it wrong. I want to be calm but the pain is so severe and no ones breast turns orange and has that many symptoms for no reason I feel a mess and im so worried I won’t be here for my son x I’ve tried every pain med nothing help

AliceBastable

Any updates?

jo6359

worried- have you received your results from your MRI? I hope everything is going better for you. And I really hope you have found some answers

Worriedasworriedcanbe

hello hun, yes I got my results and tbh I’m not feeling so good, I mean to them nothing is showing suspicious so that’s good but, it showed a 4.4mm lesion apparently to small to characterised exactly what it is they noted ‘’most likely benign’’ so they've left it as that with no further testing, some may say I'm over worrying and I should be if I'm honest, I sound crazy to some but this is my horrible reality and everyday it's just worse, but the fact they aren't wanting to go anything else to test what this lesion is and just assuming it's benign to me is frightening and they noted I have enlarged nodes and they have no reason why, they've been enlarged for 9 months with no explanation, I'm just gutted I wasn't told exactly what is going on or they don't want to do more, I'm glad I got good results but it's just left me feeling a little concerned still, I was hoping I'd feel reassured but this lesion has never been found on the previous many ultrasounds I've had or been felt by any specialists so knowing now about it isn't a nice feeling and to know my lymph nodes are still the same of which I guessed anyway as it's so tender and thick under my armpit, I guess I'm just overwhelmed with everything at the moment. Hope you're well and I appreciate you all checking in on me xx

Worriedasworriedcanbe

updated the post x

marijen

Worried, that is so unfair that you’re still wondering what the problem is and you’re still in pain. Did you get a copy of the MRI report - you are entitled to a copy. You can post it here and maybe djmammo will interpret for you, Leave off the personal details of course.

GiddyupGirl

Hi worried - I am so sorry you're going through this and not getting any answers, its horrible. Have they done any blood tests i.e. white blood cell count, neutrophils etc to check for an infection. You can have one without a fever. Did they give you any scripts for anti inflammatories antibiotics pain meds.

jo6359

marjen- I have to agree with you. DJ mammo is so knowledgeable. I sent him some of my test results before I went for a second opinion.

Worried- I'm so sorry you're still experiencing anxiety and pain. I agree with the above post I would request a copy of my MRI results.

KBeee

I would definitely want a copy, and also would want to be checked for infection and/or have the enlarged lymph nodes further evaluated. Have they done a punch biopsy on the skin? A dermatologist might be able to do that.

Worriedasworriedcanbe

yeah I got a copy of the results, I’m saddened to as my doctor belittled my symptoms when they made the referral and just said ‘’pain’’ not everything else that’s been going on, I’ll post my report thank you

Worriedasworriedcanbe

@djmammo could you help me with my report please, thank you

Worriedasworriedcanbe

hello, I had a punch biopsy done they had to do it on a random area as many areas were red at the time, it came back showing inflammation

Worriedasworriedcanbe

I have posted my report on the forum, it’s doesnt really explain much to be honest, I was hoping it would explain more in depth x

Worriedasworriedcanbe

Yeah I’ve had many blood tests they show nothing, I’ve tried every pain medication and anti inflammatory I can think of and they don’t help at all I uploaded my mri report I don’t understand how my lymph nodes are slightly enlarged I mean to me they feel very enlarged I have to hold my arm up a lot of the time and it’s so painful, but I have no infection so I don’t understand x

marijen

Hi Worried,

Ok, sorry, I see you posted your report with your first post in this forum. Given that there is a 4.4mm lesion and lymph nodes, along with your long term pain and breast changes (appearance) suggests to me that should try harder! Hopefully djmammo will come along. You can take this report to a new doctor for a second opinion.

Worriedasworriedcanbe

the problem is I’ve been everywhere there is to go, I’m lost at this point and they just keep saying that I’ve been seen and that’s that basically, I really don’t know what to do

marijen

I had a 6mm DCIS and that was enough for them to do a biopsy. If you insist on an explanation for your pain and discoloring,or request a biopsy of the lesion, it is a liabilty for them not to follow through.

jo6359

Worried- I think your best bet is to p.m. dj mammo and provide your test results.

Worriedasworriedcanbe

I don’t know who to contact as my GP will just send me to the same breast clinic that keeps telling me there’s nothing wrong so I know they wouldn’t allow a biopsy, I feel so stuck where was your lesion located?

Worriedasworriedcanbe

I just did thank you xx

marijen

It was located in the right upper outer quadrant and I had no breast symptoms like yours.

Worriedasworriedcanbe

was yours located on an MRI too and did it state whether it was well defined or not? Sorry for all the questions and did they state a biopsy needed to be done?

marijen

Yes, I had a breast MRI and a Pet/Ct scan. It showed on all imaging. I also had one positive lymph node. But they did the two biopsies the same day before the scans. Then three surgeries, for the DCIS, two just to get clear margins. An ALND for the lymph node. Whole breast radiation and letrozole. They never found the primary tumor. From the radiation I got acquired angioedema and delayed breast mastitis and breast lymphedema,that required two years of PT. All that for a little C and yet I'm still scared it will return!

Worriedasworriedcanbe

you went through so much of course you’re going to be scared I would be too, it’s heartbreaking I’m so sorry love. I don’t know where to go if I’m honest. I have pain management on the 17th but I doubt they can help without me knowing what it is

marijen

Oh I forgot the neuropathy due to radiation. Where do you live? In the US? Some members here find a way to email a breast clinic at Mayo or such that will get you a second opinion with your reports and maybe a pic of the breast.

You never know - the pain management doctor could be more helpful, that’s only five days away! I’m hoping dj gets back to you soon!

Worriedasworriedcanbe

I’m from the UK and yeah fingers crossed, I just feel stuck at this point x

marijen

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