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Something everyone needs to know, it could save your life.

Discussion in 'Other Health Conditions and Diabetes' started by zand, Jun 28, 2019.

  1. zand

    zand Type 2 · Expert

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    We are often reminded here at DCUK that whilst generalisations can sometimes be useful they can also be misleading or upsetting for those who don't fit into the brackets of 'the norm'.

    I recently had a health problem that I want to share with everyone, it's a rare(ish) condition yet it affects 10,000 to 11,000 women in USA each year, so that not rare really. Whilst it mostly affects women it will also affect anyone who has a loved one who is female so I deliberately didn't put 'women' in the thread title as I want as many people as possible to know about this disease. If my post can at sometime in the future save a life then it will be worth it.

    My story then.

    Friday 7th June, I undressed for bed and noticed a bright red rash on one of my breasts. It hadn't been there at all in the morning and by evening it was a circle of 8cm diameter. Alarmingly, it didn't hurt or itch at all. I say alarmingly because usually (but again not always) something minor like a bite hurts and sometimes a lump or rash that doesn't hurt can be something serious. I assumed it must be a bite, but I hadn't been anywhere in the last 48 hours to get an insect bite and didn't think it had happened whilst I was in bed because it only showed in the evening, not first thing in the morning.

    I googled pictures of bites so that I could ask a pharmacist for the right cream to put on it. There weren't any pics like my rash at all. I felt pretty sure it wasn't skin cancer because I had looked at pictures of all of the kinds before I took an elderly relative to her GP to get her referred for an op to remove a squamous cell carcinoma. I felt sure it wasn't breast cancer because the rash felt warm to the touch, so must be inflammation of some kind and I hadn't lost weight unexpectedly and I had no lump and the rash had come on suddenly. My lymph glands felt OK too. That's where the generalisations can be harmful. I have heard so many times about checking your breasts for lumps... but there is a type of breast cancer that doesn't lead to lumps at all and it's the most serious kind and needs treatment quickly.

    Here's what I found and what prompted me to go to my GP first thing Monday morning (10th June)

    A Dangerous and Often Misdiagnosed Breast Cancer…

    Every woman needs to know about Inflammatory Breast Cancer. Read on for more information.

    Inflammatory Breast Cancer (IBC) is the most aggressive and deadly form of breast cancer. It does not show up on routine mammograms. Because of its aggressive nature and the difficulty of diagnosis, it can be easily misdiagnosed or treated incorrectly compared to more common breast cancers. The symptoms below may appear overnight without warning. Doctors often misdiagnose Inflammatory Breast Cancer as a breast infection or mastitis. If you have symptoms, and they do not go away with creams, ointments or antibiotics, in a normal period of time, demand that your doctor rule out IBC. It could save your life.


    Common IBC Symptoms: • Swollen breast or a painful breast • Persistent itchy breast • Rash on one breast or a bug bite that won't go away • Nipple changes or discharge (including flattened or inverted nipple) • Hardened area in the breast • Swollen lymph nodes under arm or above collarbone


    Things You Need To Know: • Biopsy, diagnostic mammogram and breast ultrasound are used to confirm the diagnosis. • Insist that your physician take your temperature at initial exam. Mastitis is often accompanied by an increase in body temp, while IBC is not. • Any sudden changes to your breast (sometimes overnight), swelling, constant itching, pain or discoloration need to be taken seriously. See your Doctor.

    For more information, visit the Inflammatory Breast Cancer site. www.eraseibc.com

    I was worried as I was due to go on holiday on the Saturday so didn't think I could afford to wait until the 'bite' had chance to heal. My doctor reassured me that it may not be IBC, but also said equally it could be, a 50-60% chance that it was. He gave me antibiotics and creams to cover all minor options, and to treat cellulitis too to cover all the bases and made a further appointment to see me for yesterday.

    On the 14th June amazingly and wonderfully the rash changed in appearance and became a bullseye pattern. I also felt a bit dizzy and faint. This was the most wonderful thing that could have happened. I had seen that bullseye rash before when I looked up tick bites so I was delighted to find that I 'only' (lol) had Lyme Disease. This was confirmed by my doctor yesterday.

    I have worked out that I was actually bitten by an infected tick on May 18th at a visit to a petting farm where I fed the sheep so my grandson could watch. I am so glad I didn't let him be close to the animals at all that day. Again I didn't know that tick bites don't come up into a bite or rash until maybe a month after the actual bite. Sometimes there is no rash at all so diagnosis is more difficult.

    So here's my 2nd bit of advice. If you think you may have been bitten by a tick at all, (and it could be anywhere, even in your hairline) go to your GP. Lyme disease can be very serious if it's not caught early enough.

    I have 3 weeks of antibiotics which will hopefully clear up the problem in my case. If it doesn't I will need to go back to my GP for help with any further symptoms. Lyme too can be life threatening, but as an alternative to what I thought was wrong with me, I'll take it. :)
     
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    #1 zand, Jun 28, 2019 at 10:21 AM
    Last edited: Jun 28, 2019
  2. DCUKMod

    DCUKMod I reversed my Type 2 · Expert
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    What a scary, scary time for you Zand.

    Is your Doc sending you for a precautionary session at your local Breast Clinic? Having been around the rapid access system twice, I found it to be very thorough and reassuring. Typically for me, I ended up having something very unusual too, but then you'd expect that of me. Atypical in almost every aspect. :)

    I hope you'll be feeling tip-top soon.
     
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  3. lovinglife

    lovinglife Type 2 · Well-Known Member

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    Wow @zand - what a distressing experience for you, so glad it wasn't what you thought it was - I lost a friend 22 years ago this week to that particular cancer - very fast and very aggressive- she was told numerous times it wasn't cancer until it was too late. As women we need to be reminded it's not just lumps we are looking for.

    After saying all that Lyme Disease is nasty enough to have - hope you're ok and on the mend ((()))
     
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  4. Brunneria

    Brunneria Other · Moderator
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    Thank you.
    I had never heard of that kind of breast cancer until your post, and it would never have crossed my mind that a rash like that could be cancer. Forewarned is forearmed.

    'Just' Lyme Disease, eh?
    Hope the treatment goes well, that you caught it early enough, and that you have no side effects.

    Can I suggest that you contact the Petting Zoo and let them know that their animals may be spreading disease. Would be dreadful if there was a Lyme Disease outbreak in the area as a result of all the physical contact there.
     
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  5. Pipp

    Pipp Type 2 · Expert
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    Thank you zand. Wanted to give informative, useful, optomistic, and hug for that thoughtful sharing of experience. Winner just about summed it up.

    Get well soon.
     
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  6. kitedoc

    kitedoc Type 1 · Well-Known Member

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    A good result after a most worrying time @zand.
    Lyme disease is extremely rare in Austraila, only seen in those from the US or who have travelled there.
    But ticks with other nasties are all too common !!!
     
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  7. Mike D

    Mike D Type 2 · Expert

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  8. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    Glad to hear all is okay Zand and with some helpful advice too :)
     
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  9. Guzzler

    Guzzler Type 2 · Master

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    Thank you, and thank you again. This is probably one of the most informative threads I have read on the forum. I have never heard of this form of breast cancer. I hope that your treatment leads to a full recovery quickly. Lyme's is no joke.
     
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  10. zand

    zand Type 2 · Expert

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    No he isn't. However purely by coincidence my routine mammogram was already booked for Monday 24th, the day after I got back from holiday. I asked him if having one would do me any harm if I did have IBC and he said no, so I have had that done. Also he did a thorough check for lumps and any other problems, including lymph glands.
     
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  11. DCUKMod

    DCUKMod I reversed my Type 2 · Expert
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    If you had gone to the fast-track Breast Clinic, you'd likely have had one as part of the diagnostic proces.

    Of course, my visits there were for different symptoms, but on the day(s), I have and examonation, ultrasound, mammogrammes, and biopsies, all one straight after another, with initial feedback before leaving, to be followed up a few days later, once all the images had been viewed by at least one other Radiologist, and the hostology was back.

    I don't want to go there again, but if I did need to go, I'd be comforted to know how slick it is.

    That timing was lucky. It doesn't usually work out that way, does it?

    What a scary time for you.
     
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  12. zand

    zand Type 2 · Expert

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    Oh I am so sorry to hear about your friend. That's tragic. The words 'if only' are so very sad.

    My Mum died of a different cancer, it was Friday June 7th and there was a thunderstorm as she died. When I found the rash it was also Friday June 7th, 23 years on and the first thunderstorm I have witnessed on that date since she died. The shock of discovering the rash at the same time as hearing a clap of thunder on that particular day and date was immense!

    Well I am not feeling brilliant tbh and that's why I am slow to respond to posts on this thread. I know that Lyme may stay with me for always and may cause havoc in my body in the future. However the salient word for me in that sentence is 'future' - at least I still have one, so I am happy :)
     
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  13. HSSS

    HSSS Type 2 · Well-Known Member

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    I too had a breast rash, it’s been there on and off for months, lasting weeks each time and doesn’t respond to creams etc. This last time I went to the gp about it I was sent on the fact track cancer check (second time in a year, previously for a lump that was cleared by mammogram). Ultrasound and examination ruled this lesser known cancer out but it is truly scary it so little known about. The possibility had been ignored/unknown at least 3 times up til this last visit.

    So glad you also got the all clear and this is a great post to raise some awareness. Hope the antibiotics work their magic on the tick bite
     
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  14. zand

    zand Type 2 · Expert

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    Thanks for this. I was thinking I should contact the zoo and let them know, then I really couldn't be bothered. I emailed them yesterday after reading your post. Thanks for giving me the push I needed to do the right thing :)
     
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  15. zand

    zand Type 2 · Expert

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    I hadn't heard of it either and it's so wrong that we aren't informed of the most aggressive types as a matter of course along with the advice about the other types. Early diagnosis and treatment is so crucial with IBC.
     
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  16. zand

    zand Type 2 · Expert

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    Phew, I'm glad you're OK. It is so very scary, one minute you are fine and the next you may have something extremely serious.
     
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  17. zand

    zand Type 2 · Expert

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    I've been thinking... I was always telling @Heathenlass that sheep were dangerous and evil. See?! I was right lol. Wish you were here Signy. x
     
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  18. satindoll

    satindoll Type 2 · Well-Known Member

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    @zand ........Glad your Ok.......many of us miss her.........and others who no longer post......x
     
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  19. Mike D

    Mike D Type 2 · Expert

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    She was a very funny lady ... disarmingly irreverant but in the most amusing way @satindoll
     
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  20. satindoll

    satindoll Type 2 · Well-Known Member

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    Very un PC.........but with a dimple......:joyful:
     
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