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GP suspects breast cancer but I don't think it is

joyce.a88
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Hi everyone

This is half asking for advice, half just letting this out because I don't feel able to tell anyone.

TLDR superclavicular lymph node swollen. GP referred me to breast clinic after exam but I feel all my other symptoms are in my vulva and didn't tell them. Will this ultimately affect how I'm treated?

longer version:

I'm looking for advice as to whether I'm receiving the "right" treatment for my symptoms. I know you can't diagnose me here but I'm confused by what I've read online and how that differs from what's actually happening. I have anxiety and don't really stick up for myself in person. I just go along with what people tell me to do which I know sounds ridiculous at my age but it's like I don't think to say I don't agree with something until later. My therapist said I need an autism assesment but I don't see any point at my age.

I'm a 35yo woman and have been unwell for some time due to a genetic condition. It's normal for me to be in pain or have bleeding or random swellings so I mostly ignore things until they don't go away and really start to bother me. I wouldn't notice cancer symptoms because they are quite often things that are normal for me. It affects my whole body so I have bladder, digestive, reproductive issues... 

I was diagnosed with unprovoked above knee DVTs last year. Since then, whenever I have tried to stop taking apixaban my thigh swells up three times its normal size and at times we've had to cut my underwear off because of it. I've been put on the blood thinners forever and have a diagnosis of post thrombotic syndrome until I can see the DVT team in person. This swelling feels like when I had pre-eclampsia. I have also been having symptoms of swelling of one side of my vulva but I put this down to the pressure of the clots in my thigh. I have been wondering if I had a clot "down there" as well as on my lungs but figured I was on the right medication for it if I did. I had 75% of my cervix removed 8 years ago, high grade cells but negative HPV. I've had absent periods due to estrogen dominance for 5 years and have been inducing them every few months. I haven't for the last 6 months due to the higher dose of blood thinners but I've had two regular periods that started on their own. Until this, I've been considering going with the recommendation of radical hysterectomy "due to ongoing risk of malignancy" that was advised years ago, but deemed unnecessary by a new consultant. I had tubes removed during my c sec at 25 and don't want any more children but they wouldn't do it because I was only 30 and might change my mind... Things just don't feel right down there. My skin around my knickers area has been incredibly itchy to the point where I have photos of where I've woken up with my nighty stuck to me with blood as I've scratched myself so badly in my sleep. I have fragile skin but have never scratched myself like this. I don't even have nails. I have been meaning to do something about it but life got in the way.

I noticed a swelling above my collarbone about two months ago. My first thought was a goitre (knowing absolutely nothing about goitres except that a mum at school has one). This is on my left hand side and nowhere near where I would have a goitre. It's at the base of my neck where it meets my shoulder. I believe its the superclavicular area. But as I have a lot on I just ignored it. It's been slowly getting bigger. Not painful at all but the swallowing is getting worse so I looked it up. Then the worry started so naturally I left it two weeks before getting the courage to see my GP.

I went yesterday and was expecting them to tell me it was nothing. When they took the lump on my neck seriously I thought they would ask about my vulva. Instead they did a breast exam on my left side and asked about my family history (I don't have access to my birth family history except one grandmother died from breast cancer). She had asked about any lumps and I explained a hard lump I already knew about under my breast which I had assumed to be a hernia as it was over my stomach area and it pulls a bit when i exert myself. Thats been getting worse for a long time. I couldn't even say how long. She didn't check that area but did check some breast tissue a few times and seemed to have enough info without doing the other side. I have swollen glands under my armpit as well which I assumed was just from being run down. I've been referred to the breast clinic on the 2 week pathway and she explained I would probably need a mammogram and some other tests. The rest of the conversation was mostly about how they will do the tests with my mobility problems.

The doctor was very kind to me and seemed almost sad for me which has made me worry. I think I would have rather been told I was imagining it all.

I am no doctor and obviously I have been wrong about the goitre ... but I just don't see myself having breast cancer. I can't feel any lumps except under my armpit. I have no changes. When I had the clots I had a chest xray - would this not have shown something? I absolutely can see myself having some sort of cancer of my reproductive organs. I've never trusted that I had precancer with no HPV and now only HPV is looked for once the colposcopy clinic discharged me. I'm also starting to think that the swelling in my leg isn't post thrombotic syndrome and it could be lymphedema after reading up on it. I think the apixaban is helping by letting the blood flow more freely but the swelling is still there most of the time. My thigh looks awful. I just went along with what my doctor suggested yesterday and I know that it wasn't helpful not to tell her about the vulva symptoms but I thought that she would take one look at the neck lump and laugh me out the door. I guess my question is, does it matter that I've been referred to the breast clinic if I didn't have breast cancer? Should I have been referred somewhere else about the lump on my neck? If this is the case, will they just refer me on?

I'm already hating myself for just not saying anything and possibly wasting their time and resources and I'm trying to convince myself that she wouldn't have referred me after the exam if she didn't feel the need to? Or could this be me being stubborn because of some undiagnosed neurodiversity and always thinking I'm right about things until proven wrong?

Thanks for reading and sorry for going on with myself!

Siobhan 

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    Hello Siobhan

    I'm so sorry to hear you are so anxious. I think it would be a good idea to concentrate on the immediate issue - your referral to the breast clinic. Once there, the consultant will ask you about other symptoms which might be relevant to your condition. You can then explain your other worries and ask if they can be investigated.

    Your swelling near the collar bone sounds very similar to mine. I thought I had rib cage inflammation which is very common with fibromyalgia which I have suffered from for many years. I have recently been diagnosed with breast cancer, which I thought was very unlikely since my breast looked completely normal.

    Try not to self-diagnose because we are often completely wrong! The clinic is the first step and I hope you have some good news soon

    Best wishes,

    Anne 

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    No, it doesn't matter that you have been referred to the breast clinic if you don't have breast cancer. Most people referred there don't. It doesn't mean the doctor thinks you have breast cancer. It just means it's one possibility that they need to check out to find out if you do or you don't. I think something like 80%-90% of those referred for mammograms don't have breast cancer. It could be even higher; I am just remembering something I read ages ago when a family member went for a mammogram and I wanted to know what the chances were.

    If it's not breast cancer, then that's one possibility ruled out. If your doctor doesn't call you back, you can make another appointment with him to discuss what else it might be.

    As regards the swelling on your neck, if you are worried about thyroid cancer, then there's no great rush to investigate there. For one thing, goiters and thyroid nodules are extremely common and most are harmless. Only about 5% are cancer. And for another, thyroid cancer is very slow-growing and at your age, has a survival rate well over 99% for the most common forms (of the less common forms, medullary also has a very high survival rate, into the 90s and anaplastic is highly unlikely under something like 60). I had thyroid cancer and honestly, probably had it for at lease 5 or 6 years before anybody realised. And it never caused any symptoms and the doctor was still like, "ah, there's no rush about removing it but I suppose psychologically, it's better to get it done as quickly as possible." Your doctor is the best one to say whether or not your need a referral. None of us will know as well as she does about that.

    If you have doubts about the accuracy of what your GP said, you can always get a second opinion, but it sounds like you are thinking that referring you for a mammogram means she is saying you have breast cancer when she's not. All she is saying is there's a lump there and it should be checked out to be sure it's not.

    You can always make another appointment about your vulva if you remain concerned about that.

  • Offline in reply to afd

    Thank you so much for replying to me. I'm about to go for my appointment now and I'm very nervous. I hope you're OK? How is your treatment going? 

  • Offline in reply to MargaretMary

    Thank you for your reply- it's very informative. I'm not worried about thyroid cancer as I have no symptoms. I meant I just wrote the superclavicular swelling off as a goitre but I was wrong about how they present. I am sorry I have worded my post wrong - I was going off my letter which says "fast track referral for suspected breast cancer". I know that a GP can't diagnose me and I don't feel I have health anxiety so not trying to diagnose myself or read into things too much. I'm setting off to my appointment now anyway so I'll see what happens :) Hopefully it's nothing to worry about. Thanks again 

  • Offline in reply to joyce.a88

    That is just a medical term. It doesn't mean they think you have breast cancer, just that they are referring you for a test to rule it out.

  • Offline in reply to joyce.a88

    Hello

    After a consultation with the breast surgeon (at a hospital which is local to me) I was told I have a grade 2 invasive cancer in the breast and cancer in at least three lymph nodes.I shall have surgery next week.I had to fill in a lengthy online questionnaire last Friday and today I have had to travel to yet another place for an ecg as part of my fitness assessment for the operation. All this travelling from place to place has tired me out so I shall be glad when I actually have the procedure! It appears that there is little coordination between all the parties involved because they don't seem to have the full information at hand! I was actually asked to state my ethnicity this morning because the GP had not put it on file! I can hardly believe that this was not known seeing that I am nearly eighty one years old!

    Please don't be too nervous. Everything will come right in the end.

    Best wishes,

    Anne.

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