Two Dr's completely baffled, off to specialist

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skram
skram Member Posts: 15
edited October 2018 in Not Diagnosed But Worried

Well I've now seen two GP's regarding the growth of my right breast by about a third in the last 2-3 months. I've had an itch below the nipple for around 6+ months and the swelling (which is along the bottom part of my breast) has pulled my breast down. I have a slightly raised area on the upper inside quadrant with an indentation with a bruised look to it and that area is very smooth compared to the rest of my breast tissue and I still experience itching and a feeling of sunburn on the inside of the breast, or the feeling of a super itchy woolen jumper under the skin.

The GP I saw yesterday did a really thorough exam (unlike the last who said "it's probably thrush of the nipple and sometimes our bodies just change...." ugh tell me that if that was one of your testicles ffs). I even did the fungal cream on my nipple just in case but it made no difference. And during yesterday's exam the GP mentioned that my right nipple looks irritated compared to my "normal" breast.

The Dr even looked at all my meds and their side effects to make sure that wasn't causing the issues... I'm really impressed.

I have already had a mammogram and ultrasound which came up totally clear, but I still had a manual exam (which the first GP didn't do...smdh). And as I expected there were no lumps, nothing to indicate anything ominous. But at least this GP was honest enough to say "I have absolutely no idea what is causing this, it's not lymphatic because your right arm would be affected too, but you need to see someone who can hopefully figure out what's going on".

4 women in my family either currently have, have died from or are dying from cancer in my family over the last 4 years, so of course it's hard for me not to go there, especially now that a well regarded Dr hasn't been able to even give me an idea of what it might be. I worry about Paget's, IBC... I know I'm lucky that my ultrasound and mammogram came back clear, but not knowing what is causing these ongoing changes is filling me with uncertainty and anxiety.

So I see the specialist in 3 weeks. Wish me luck.

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  • Lily55
    Lily55 Member Posts: 3,534
    edited September 2018

    In your place I would be insisting on an MRI with contrast..........there are certain things, both cancer and other conditions, that tend to only show up on MRI´s......

    Good luck

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  • skram
    skram Member Posts: 15
    edited September 2018

    Thanks :)

    I'm just so over noticing every single twinge or pain, constantly checking for changes.... it's bloody exhausting. Hopefully I can get the contrast MRI done under medicare (I'm Australian so we have universal health care but there's been some changes to what you can get done cost free).

    I've had heaps of MRI's and CT's over the last 4 years due to failed ortho surgery, so I know I tolerate contrast dye so depending on the specialist's view I will definitely ask if that's doable. And if not I think I'll push until I find a way to do so... my gut tells me that I need to be assertive about this.

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  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited September 2018

    Consider seeing a dermatologist, too. They can easily fo a punch biopsy to see if this is Paget's or IBC.

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited September 2018

    My advice would also be breast MRI - (I just had one last week). It was amazing what all they can tell !!

    Keep fighting for it. Visiting a dermatologist is also great advice, but keep pushing for that MRI!

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  • skram
    skram Member Posts: 15
    edited September 2018

    a sample @mustlovepoodles (love the name btw) I initially worried it might be IBC because that's kinda the boogey man, isn't it? Some little discolouration and suddenly you're at stage 3 or IV

    But I haven't had the rash or orange peel skin, just the incessant itching below the nipple (sometimes I just have to pinch the area so hard to relieve it as scratching doesn't always work- it's like it's just under the surface) and there's obviously the breast shape/size change.

    And I've had no nipple discharge, although it seems slightly more sensitive than usual (I've always had very little nipple sensation) and the GP reckoned it looked more irritated than the other side. But again, no lumps.

    I'm hoping it's just some weird pre menopausal glitch but I won't lie and say I'm not worried. Luckily the specialist I've been referred to is an endocrine and breast specialist, a surgeon at 3 top hospitals where she does breast reconstruction and works as an oncologist working specifically with breast cancer, so she'll know her stuff from the sounds of it

    Plus don't they need something to biopsy? Because there's no lump to take a sample of.

    I don't know much about any of this- my 36 year old sister's anaplastic astrocytema? Yeah, I unfortunately know what's in store for her.

    My step mum had a relatively good outcome with her BC- stage II grade II with lymph node involvement. Double mastectomy and lymph node removal, reconstruction using fat from her tummy.

    My aunt (6 years older than me) had a total hysterectomy for ovarian cancer this year and my mum died of curable cervical cancer in 2013 because she believed woo woo would work better that actual science :(

    So it kinda feels like all the significant women in my life have had to deal with cancer, so it's hard not to feel like I'm next. Which makes it hard to distinguish between my gut and my anxiety.

    At least I only have to wait 3 weeks to wait to start getting answers (I hope haha)


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  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited September 2018

    You description of this breast thing doesnt really sound anything like IBS. Usually, IBS is pretty dramatic, advancing over a period of hours or days. Obviously, I don't know what this is, but I'd be VERY surprised if it was IBS.

    I think your worries may be heightened by the number of cancers in your family and friends. It's only natural. Nobody deserves cancer and it's frightening when we learn that someone close to us has it. After all, if they got cancer for no good reason, well, then we could, too!

    Hang in there. I know 3 weeks feels like a long, long time.

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  • skram
    skram Member Posts: 15
    edited September 2018

    Mustlovepoodles

    Yeah, I would be very surprised if it were IBC too... I think that it's just such a random thing and the itch and discolouration, plus breast size change, made it seem possible, as remote as that possibility might be.

    I had a look on the IBC page and damn, I feel so bad for those women having to deal with all the "HELP! pea sized area that's slightly pink it this IBC?! BTW I am breastfeeding" posts even though it quite clearly states it's for those already diagnosed *smdh*

    I'm just a very impatient, must have all the knowledge immediately kinda person so I'm doing my head in chasing my own tail here. I know I won't get anything amounting to an answer until I see the specialist, I just can't seem to leave it alone.

    The joys of severe anxiety/agoraphobia brought on by trauma related PTSD which I haven't dealt with (seriously, no one would believe the amount of people I've lost, including my partner committing suicide when I was 4 months pregnant and me finding him- it will be 15 years next month and I haven't dealt with it at all, nor my mum's refusal to accept our FREE treatment at our excellent cancer hospital Peter Mac here in Melbourne bc frigging reiki works better than chemo- it was a 16 month suicide that my sister and I had to watch and was hugely traumatic).

    There's only so much wine and Netflix a gal can take

    Thanks again for taking the time to reply, it's very kind of you <3

    Emma

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  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited September 2018

    I'm so sorry. Those are two great losses. I'm sure there is a measure of anger mixed in with your grief. I have a hard time with people who push their woo-woo agenda while ignoring traditional tried & tested cancer treatment. When I went through chemo, I was happy to rub essential oils into my aching feet; I was happy to get gentle massage and listen to meditative music. But I still took the chemo, because last I checked oil, massage, and music hasn't cured any cancers and, frankly, I don't want to die just yet. I'm sure your mother had her own reasons for rejecting Western medicine, but it must be a bitter pill for you.

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  • skram
    skram Member Posts: 15
    edited October 2018

    Ms Poodles (hehe) Yeah, seeing my mum turn her back on treatment for curable cervical cancer and end up with a colonoscopy bag almost near her sternum because it had invaded her bowels so much and she still thought these charlatans would help her.

    No kidding one woman (who is rich bc of her work) did a hands on "healing" and showed her the tumour (read chicken liver hidden up her sleeve) and then told my mum any additional bleeding was just "the rest of the cancer leaving her body". NEGL I want to meet this b%tch in a dark ally one day.

    And when mum had septecemia (sp) and a perferated (sp) bowel- and she still showed up for xmas and pretended she was just tired.... talk about absolute denial and my god, how much pain would she have been in! Anyway when mum was in hospital after they operated on her mum texted this "healer" and said she doesn't want to die and all this bleep did was text mum a prayer emoji.

    So yeah, there's a lot of unresolved anger and I was also the only one with her when she died and that was incredibly traumatic, she didn't die peacefully at all and we never got the chance to make amends bc of her denial and refusal to talk about her cancer.

    Bad times indeed

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  • LoriCA
    LoriCA Member Posts: 923
    edited October 2018

    Sorry for all you are going through skram.

    To answer a few of your concerns about IBC, as you already noted with IBC the skin would typically take on an orange peel look, not smooth, and the surface of the breast would typically feel warm/hot. Although it's not uncommon I didn't have any itching at all, after the appearance of a small rash my breast turned hot, heavy, very swollen and the "bruise" was extensive - at one point everything from my waist to my collar bone on my right side was purplish. Lymph nodes in my armpit and above my collarbone were very swollen. If your symptoms have been present for 6+ months and aren't drastically worse, that's a strong sign that it probably isn't IBC. My situation deteriorated so quickly after the first symptoms that my head was swimming. As for the skin punch biopsy, IBC does not grow in a lump, it grows in sheets or layers, so quite often they will do multiple biopsies when IBC is suspected. I had three punch biopsies done in three different locations on my breast when I was diagnosed so they could be sure to get a sample that contained the cancerous cells. The lack of a lump is what makes it so difficult to catch early. Even with an MRI or ultrasound the most obvious sign of IBC is usually just skin thickening. The biopsy is for the pathological diagnosis of invasive cancer, IBC is a clinical diagnosis, so the pathology report doesn't list IBC.

    I hope your doctors figure it out soon and that it is something easily resolved (not cancerous). I do think you can safely put any thoughts of IBC out of your mind, mainly because after 6+ months your symptoms would be drastically worse if it was IBC. And thanks for respecting that the IBC forum is for people who have already been diagnosed, some of us try to keep an eye on this section and are happy to answer any questions you might have. :)

    Lori

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  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited October 2018

    Dear Lori--just for information's sake, I had IBC and had a solid tumor. So it can happen.

    Dear scram--I agree with everyone else. Your symptoms don't sound anything like my IBC which presented just like Lori's, except for the solid tumor. A breast MRI shows up a lot of things that nothing else seems to do. I hope you get all the best imaging tests and biopsies to get to the bottom of all this. Be sure and text us your results. We all want to learn.

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  • LoriCA
    LoriCA Member Posts: 923
    edited October 2018

    Winning, yes thanks. I didn't mean to imply that it never grows as a lump, only that it usually doesn't because of the way it grows in sheets so a mammogram could be clear and one could still have IBC. It's not common to have a solid tumor that can be detected early with IBC and by the time there's any sign of it we're already at least Stage III. Actually when mine spread to my left breast a few weeks later I did develop a large palpable lump on that side. I wonder if the fact that you had a previous BC Dx contributed to the lump?

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  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited October 2018

    "I wonder if the fact that you had a previous BC Dx contributed to the lump?"

    ----------------------------------------------

    I think it did since the tumor was very very close to the previous tumor bed. I also had the sheets of cancer but interestingly enough they all biopsied the same.

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  • skram
    skram Member Posts: 15
    edited October 2018

    Thanks Lori- yeah the symptoms are just bizarrely random.

    I, had the terribly itchy spot below my nipple for probably 6 months, but the swelling only came up over maybe the last 6-8 weeks (which I know isn't indicative of IBC, thankfully). I think the issue with all these IBC freakouts is that it's suddenly all over the net and sometimes it's hard not to allow yourself to think the worst.

    I just wish I knew what these symptoms could mean! I type in "benign breast conditions" and most of it is cysts or fibroids etc whereas I have no lumps, cysts, dense breasts, nothing like that. Nothing comes up that covers my symptoms at all, instead the searches all take me to signs of cancer lists "no woman should ignore"

    For example, I now have what looks like like raised welts, almost like when a mosquito bite spreads and becomes a welt/hive looking thing instead of a small bite. They're not huge though, maybe the size of a smallish wedged shaped makeup sponge.

    It's those welt areas where my breast tissue is smooth (I assume because it's swollen), however they also contain indentations, some bruised or discoloured, some not. I developed big-ish breasts very quickly, they've never been pert and my pores tend to be obvious as a result, but the welt areas are super smooth which how I first noticed them.

    I also seem to be developing some very small...well, I'd describe them as small pock marks that are simply randomly appearing here and there.

    My nipple is also really puffy along the lower half and, again, smoothing out and I think the nipple shape is becoming more segmented, almost like it's divided into 4 parts, like a four leaf clover (it's hard to describe, sorry). I mean, it's not leaking or retracting so I know it's still ok and all nipples are different, but I don't recall my nipple looking like this before, so god only knows. Plus I've never had real nipple sensitivity because the shape and weight of my breasts apparently reduced sensation but my right nipple is definitely more sensitive that it has been.

    The swelling in my breast is all contained in the lower half and some swelling even seems to stretch around the side of my ribs and around my armpit, all of which means more visible veins,stretch marks, enlarged pores as well as small red spider-like veins springing up everywhere because my poor pre-menopausal skin is being subjected to a stupidly random, asymetrical growth spurt


    Luckily I only have a few areas of discolouration but no rash, no orange peel skin (and with pores like mine it could almost mimic it in a very minor way) etc, so yeah IBC seems 99.9% out of the question

    Still, I've been seeing changes I've never experienced before, sometimes within a day or so and it's scary.

    Fortunately from what I can tell nothing I'm experiencing seems to fall into the Big C category.

    So WTH is causing them? Apparently not a lymph blockage (which I suspected) because it would be effecting my arm too, according to the GP.

    My concern is, even if it is benign- which is what it sounds like, thankfully- I don't want to be left with a breast like this, and nothing I google or read about matches my situation. What if the specialist decides that, because it's just benign, there's no need to take any immediate action? Or any action at all?! I certainly do not want this indefinitely.

    LOL and I still have almost 2 weeks of my brain obsessing over every little bump or slight change in colour.

    I'm watching Netflix almost 24/7, drinking wine, taking my meds, seeing my current psychologist and trying to not fixate but my anxiety/PTSD/agoraphobia means I'm alone almost all day, every day until my daughter gets home so I have virtually nothing or anyone to keep my mind occupied (although my step mum, who had a radical double mastectomy 2 years ago, has been so kind by allowing me to talk to her about my fears and she totally gets that confusion and second guessing of "is this my gut or my anxiety" that happens when you've experienced extreme stress or trauma).

    Hence my endless posts... I do apologise, I know it must be really trying for those of you actually dealing with a diagnosis hearing me whinge about some hypothetical scenario that's most probably not even a concern.

    But I really do appreciate having a safe place to vent and be neurotic (like, I'm scared stiff about having a punch biopsy even though I have 15 screws in my pelvis after several badly botched surgeries...go figure). Thanks to everyone who has taken the time to humour me and reassure me during this time.

    And hey, at least at 9.15 on the 16th I see a very well respected specialist, although unfortunately I can't afford to have an MRI due to changes to medicare. But hopefully I'll get some answers regardless :)

    Emma x

    Oh, and once I have a diagnosis;

    Well, if it's a good news story I'll definitely update and then leave the site rather than post for several years about my plethora of cancer screenings that all come up negative haha. And if it's not such great news at least I know there's a lovely group of people here who can help me navigate the journey with reliable info and empathy :)


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