Inflammatory breast cancer

Was just diagnosed with inflammatory breast cancer on Dec 30 - happy new year to me! :(

Started having breast issues in late Nov and had a heck of a time with the round of docs because "you are young, so this probably isnt cancer" and "cancer isnt painful so this probably isnt cancer" and "it cant be this type of cancer because that is so rare"...:rolleyes2:

well guess what - mine is PAINFUL, rare (less than 1% diagnosed have this type) and CLEARLY im not too young since i HAVE it.

Im triple negative so hormone therapy is out. Chemo port due for insertion Jan 21 and tentative 4 months of chemo before surgery to get this sucker knocked back a little. Then more chemo afterwards and possible radiation pending test results.
I've spent all day today getting the CT, MRI and Friday is MUGA for the chemo.

Just needed a little vent about how i was treated (or NOT treated) for over 40 days for the pain because at first they kept saying I had mastitis, and later I quote one of the docs "well it isnt something to worry about since we will remove the nipple and breast during the mascetomy"...um, HELLO? (this was the first time i had 'mascetomy' thrown out and of course i freaked.)

As it turns out i have MONTHS before the surgery, and ended up having to go to my GP doc to get pain meds!
Is this type of situation something I am going to have to deal with for the rest of the time with docs? They are so busy looking at my one breast that they are ignoring the rest of me. (well unless you count the fact that they are now recommending i get a double mascetomy to 'prevent future issues') :mad:

Comments

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  • Oh my gosh, I hate hearing stories like this. I can totally understand your frustration. Some doctors can be so insensitive. I've had too many experiences like yours so one of my goals in becoming a doctor (/why I want to be one) is being one who actually LISTENS to patients.

    Not everyone is like that though - I have had some really great doctors. Luckily now, most of my doctors are familiar with me and my medical weirdness, but I especially have trouble with new doctors. Sometimes YOU know yourself better than the doctors do!! If you have the resources could you pursue a second opinion? I am not too versed in insurance so I'm not sure if it is usually covered but that way at least you could have another option and maybe the second doctor would be more empathetic/not a ditz!
  • Wow, that is horrible!! I can't understand how some people can become doctors! I can unfortunately relate somewhat. I was also diagnosed over the holidays! Dec 23 my GP called me in to discuss my biopsy results and told me that "it looks more bad than good, but I can't give you a definitive diagnosis yet as these is all early results so I need to send you for an MRI to stage you, just though you should know it doesn't look good" then proceeds to tell me to enjoy my family over Christmas and that she is praying for me!! WTF!! I am nurse so I know more than I sometimes want to so I read into it pretty quick, that being said your doctor and my doctor are both insensitive ass's!! What happened to bedside manners, where I work the doc's are amazing, they are the ones who actually helped me out in getting things dealt with.

    I hope you can find a better doctor in the future! One thing I am learning quickly being on the "other side" is that you need to advocate for yourself!

    I am going for a mastectomy tomm morning, a little scared but I was prepared for it when I started to research my type of cancer. I will also be going through chemo and radiation but not until after I heal from surgery. I wish you luck with your chemo and surgery!! I am happy to find someone else going through breast cancer treatment the same time as I am, hope you don't mind my ranting about myself a little.
  • Hey Monique - hang in there and best wishes for a quick recovery from your surgery. You can do it!

    I also was given an insensitive remark right after i was told i had the breast cancer on Dec 30, the PA tells me "well you have a GREAT holiday now!" ; same as you, i was like "WTF bitch"!??

    I did end up getting a second opinion, and the good news is that i FINALLY have a decent medical oncologist and am trying to deal with the crappy nurses on a case by case basis as they come along - that being said i am also finding a good number of GOOD nurses too. I make a point to tell them so - i know they work hard.
  • Monique;976 said:
    One thing I am learning quickly being on the "other side" is that you need to advocate for yourself!

    Unfortunately this is so true!!

    My mom is my advocate - or was for awhile and still is when I'm too sick to be. She has gone nuts on doctors. When I was a baby they broke my collarbone putting a central line in, but didn't tell her. Naturally, she flipped out (she is also a nurse, so she knows what she's talking about). Instead of owning up to his mistake/overlook, the doctor told her she needed to get pschiatric care. :mad:

    I was a patient first and worked with a doctor this summer doing research. I think sometimes people can get overwhelmed but that's not an excuse especially when you are telling people such sensitive news as a cancer diagnosis. At least, that's the only "excuse" I can think of from my experience.

    This summer a resident came to take my drain out after surgery and he decided to stitch up the hole without local anesthetic. Thanks dude. It could've taken you maybe twenty seconds to order that lidocaine but no, you're too busy. I complained about him afterwards since at the time it hurt so much that all I could do was cry and ask for more pain meds ;)
  • I am slowly learning (the hard way) that I do need to advocate for myself - but as you all have pointed out - sometimes we dont KNOW what we need to ask for.
    Why do we have to be more educated than the docs in order to receive proper care? WTF?

    @ Colleen; yeah I know the feeling literally - when I had the core needle biospy (another term for RUN AWAY!) everyone said, "dont worry, it doesnt hurt and you just feel a 'little pressure'"......er, NOT.

    I did get lidocaine. However, the surgeon literally put the lido needle down and popped the core needle into my breast immediatley. I literally screamed and started crying. Turns out they didnt listen to me when i told them i was slow to react to anesthetics, and THAT THIS BREAST WAS extremely PAINFUL. Once again, the doc thinking they know better than I do about my own body. And even then, wouldnt a doc have a clue that MAYBE you have compromised circulation in that area due to the tumor(s)? Too much to ask i guess since there are 20 other people sitting in the lobby waiting their turn next...

    Oh, and BTW - have you all experienced sitting in the oncology lobby and you are the ONLY person there UNDER 60+ years old? I looked like i should have been in there with my grandmother - made me feel even more isolated and scared.
  • when i was first diagnosed i was also told that it was very unlikely to be cancer as i was so young at the time but now i have met so many women in their 30s and 20s with BC so its not really the old ladies disease its portrayed.... im in the UK and i think part of the problem is that GPs just arent educated enough.

    because 80% of women in the UK who get breast cancer are over the age of 50 i think GPs just figure that its unlikely to be BC if your younger but of 44,000 diagnosed each year this means 8000 cases are in the under 50s.

    they also have this issue with the pain thing.... my first tumour was also painful and thats how i found it and i know a lot of folk who had pain but we just get told 'oh well cant be cancer if its sore' but oh bloody yes it can!

    the research suggests only 5% of all breast cancers present with pain as the only symptom... so yes its unusual but not impossible.... skat like you im quite unusual... first i had an ER positive tumour which is the most common type for postmeno women, but then they found out the second tumour was basal like (only 5% of cancers are), that its was triple negative (only 5% are) it was bilateral (only 7% are) and then that i discovered i had a gene mutation (only 5% are).

    maybe we are just unique ;)

    I am also a nurse.... do you think its job related :eek2: however since getting BC i changed direction and now work in that speciality.... hopefully im able to raise more awareness!
  • Erin Eloise;1097 said:
    I screamed as well! How could they possibly think that a core needle biopsy wouldn't hurt?! My favorite was when they took my blood pressure right before the biopsy and said, "Oh my, did you know that you have extremely high blood pressure?" Um... my blood pressure might be high due to the fact that you are about to stick a giant needle in me and that there is a lump in my breast to begin with. HELLOOOO!

    EXACTLY!!!!! the lady who took my BP before they drew blood said the SMAE THING - DUH ! do you get a specail stupid license to work here??
  • Skat22nbnc;1044 said:
    @ Colleen; yeah I know the feeling literally - when I had the core needle biospy (another term for RUN AWAY!) everyone said, "dont worry, it doesnt hurt and you just feel a 'little pressure'"......er, NOT.

    I did get lidocaine. However, the surgeon literally put the lido needle down and popped the core needle into my breast immediatley. I literally screamed and started crying. Turns out they didnt listen to me when i told them i was slow to react to anesthetics, and THAT THIS BREAST WAS extremely PAINFUL. Once again, the doc thinking they know better than I do about my own body. And even then, wouldnt a doc have a clue that MAYBE you have compromised circulation in that area due to the tumor(s)? Too much to ask i guess since there are 20 other people sitting in the lobby waiting their turn next...
    I worked for a derm surgeon this summer and she always gave the lido some time to start working so I think you are supposed to do that to begin with! Crazy docs...

    I had a core needle biopsy for my thyroid (well, on a lymph node). I didn't get lido because my doctor said it wouldn't have much of an effect, I guess because the lymph node he was testing for was deeper than the lido could reach or something? I didn't really feel terrible during the actual procedure... it hurt more after he'd done it a few times but not too terrible, but I was on prescription pain meds for a few days after!! My neck was pretty sore/stiff. I was supposed to get another one a few weeks ago with an ultrasound, but the doctor decided not to because he was trying to avoid the biopsy if it looked normal on the ultrasound, because it hurt. FINALLY!!! I was so happy he understood that it is not just a simple needle stick :clap:

    My favorite is getting my blood pressure. I am really petite, so when I go to adult doctors my bp reads high on the machine because their cuffs aren't small enough for me. (When I've been admitted, they usually go find a kid cuff.) Add that to really weird/faint veins (in health class, I would never have a pulse because you can't really feel it in my wrist, lol) and it's a mess. I have just kind-of given up on asking the medical assistants to measure my blood pressure manually, because they never have a stethoscope, then they have to go find one, and it's the biggest inconvenience of their lives. That is, if they even listen in the first place. I did a lab where we had to measure blood pressure and I was told my placement was "perfect". Gee, I wonder why, because every time I go to the doctor they do it wrong!!
  • Skat22 does your facility have a nurse navigator? If one hasn't been offered ask if they have one. You can also contact me with your location and I can search our database to see if one is in your facility. They can reallyu help with knowing what to ask and will sometimes go to appointments with you as an advocate for you.

    Becky

    [email]rtrupp@nconn.org[/email]
  • New Bern Cancer Care, New Bern NC
    Fox Chase Cancer Center, Philadelphia PA

    these are the two i am trying to get to stay in touch with each other.

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