Not yet diagnosed- but google keeps sending me to IBC

Options
VirtuallyMe
VirtuallyMe Member Posts: 7
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hi- I poted the following in the "not diagnosed, but worried" forum and it was suggested that I repost here... so

I'm 42 years old and here is the basic run down of my symptoms that lead me to this forum...

End of September- I went bra shopping and had trouble getting a good fit- I ended up leaving with a sports bra that had stretchy cups and no underwire.

A few weeks later (into October now)- I put on an older bra and noticed that my left breast was spilling out of the cup. 

On 10/18/10 I went to my OB/GYN for my depo-provera shot I get every 3 months- told the nurse and shared that I had also been having itching at the nipple and outer side of the breast.  She scheduled me for Mammogram- and radiologist wanted an ultrasound because of itching symptoms.  results- negative on both- except I did have an enlarged lymph node on right breast that had apparently been there since my first mammo in 2008.

On 10/22/10 I saw my OB/GYN- who said good news with negative mammo- but wanted me to see breast specialist in another town.  That appointment was scheduled for 11/24/10-

Another week goes by and I had swelling in my left arm- with palpable lymph nodes in neck, supraclavicular and at my elbow.  Still having pain and discomfort and now fatigue and noticed weight loss (I had been trying to lose weight but had hit a plateau and hadn't been following the diet- then started losing when I had junk food...)

 I called back OB/GYN to update on new symptoms- nurse suggested I call specialist to see if it is possible to get in sooner- I did and nothing available with referred md but her partner has an available appointment on 11/4/10- so I switched...

I brought copies of all mammo's and the Ultrasound to the specialist and saw him yesterday- this guy walks into my exam room- hasn't even looked at me and tells me "good news the mammo and US are normal- I think you just have fibromyalgia or maybe fibrocystic disease even though nothing of it showed on the mammo or US"  Then he examins me- solo- no supervision which I thought was a little unprofessional.  And tells me to take primrose oil and maybe see an internist about swelling in left arm...

So on the way home I called my GP and scheduled an appointment- he was concerned with my symptoms but has referred me to a local surgeon that I forgot about- who does a lot of breast cancer work.  And put me on an antibiotic- just in case it is a local infection...  Not sure when I will see the surgeon- he wasn't in his office on Fridays

 So now I sit and wait- and I keep entering my symptoms into google in different words and orders  hoping that something other than IBC shows up but the only other thing that did was lymphoma (which there is a strong family history- grandmother has it now- 2 of her 3 sisters died of it and both her parents died of it).

Right this minute- I have pain from nipple to left side of the breast and burning like pain and itching from axilla and left upper arm.  My left upper arm is an inch larger than the right and my left breast is a good cup to cup and 1/2 larger than the right...

· Share on FacebookShare on Twitter

Comments

  • kad2kar
    kad2kar Member Posts: 336
    edited November 2010

    Virtually     First thing STAY CALM. I had/have fibrocystic breast disease for way over 40 yrs,so thats easy.just painful and lumpy at times. Do you trust your Doctor?  Make an appointment to talk to doctor or even the nurse if you feel comfortable with her, and explain everything that has happened even the solo visit And most importantly your family history with lymphoma. Hopefully after your antibiotics will relieve your pain and any swelling. This website is wonderful, there are many people posting on here that will have a lot of info for you.  Read as many different forums as possible until you see something that is really helpful to you. Ask questions in the postings. My thoughts and Prayers are with you.

    · Share on FacebookShare on Twitter
  • ibcmets
    ibcmets Member Posts: 4,286
    edited November 2010

    I'm glad you have been referred to a surgeon.  You need a biopsy to rule out ibc and most likely lymphoma.  Keep pestering them for the biopsy.

    Terri

    · Share on FacebookShare on Twitter
  • VirtuallyMe
    VirtuallyMe Member Posts: 7
    edited November 2010

    The specialist I saw last week was a surgeon- but really did not like him- my GP is good in that he isn't going to ignore a symptom or guess it is something if he isn't sure what it is- he will speak up and send me to others who may know more than him- the surgeon I'm supposed to see this week- is an older doctor but a coworker said she was sent to him for a biopsy and he examined her like not even the ob/gyn did- that even her breast us he ordered was more comprehensive and done with major positioning changes on the table.

    I know I do not have fibrocystic breast disease- I've never had breast pain except in early pregnancy and when breast feeding- neither is occuring now- and as for the one specialist calling it fibromyalgia- I just thought that was stupid...

    Yesterday I didn't have a lot of pain- I was out at camp with my youngest son for cub scout mom and me- but when I got home my breast and arm were larger than thay had ever been- that went down some over night- but now I have some mild pain and there is a very light rash just off my aereola on 2 of the 4 sides- that looks the same color but spread out in an irregular pattern away from it...

    Not having any diagnosis is a pain... not that I'm looking forward to some of my options

    · Share on FacebookShare on Twitter
  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited November 2010

    So this guy was a breast specialist?  I wouldn't like him either.  Do you have any red areas on your breast, peau d'orane, looks like an orange rind?  IF it is IBC, it can be very hard to diagnos because symptons can vary from person to person.

     My mamo & US were clear but an breast MRI was able to locate the cancer. There isn't any "test" for IBC so the can be a clinical diagosis.   I hope you get some answers soon.  It is difficult to wait so hang in there. NJ 

    · Share on FacebookShare on Twitter
  • VirtuallyMe
    VirtuallyMe Member Posts: 7
    edited November 2010

    No peau de orange- but there are changes in the skin of the breast around the aereola and also in an area where I get the most pain... and also 2 new moles- red, round, well defined- were flat but one is now getting bigger...  the rash I have is faint red- very light- not anything like pictures I've seen- the edema in my left arm probably worries me the worst since I have several palpable lymph nodes there.

     I'm currently taking amoxicillin- given by the GP "just in case" there is an infection- my allergies are also acting up so when I saw him I sounded horrible- but even on the PO antibiotics and having gotten a shot of Rocephin and cortisone- my allergies are only mildly improved (cortisone I guess) but all lymph nodes are still big- none are really painful and none protruding visibly or anything.

    I find out tomorrow about when I see new surgeon- that is in town- that I wish I had remembered about in the first place...

    The other guy who said Fibromyalgia/fibrocystic breast disease- is a breast specialist/general surgeon- had an certificate in the exam room that he is a "Certified Breast Specialist"- definitely not happy with him

    · Share on FacebookShare on Twitter
  • michelah
    michelah Member Posts: 14
    edited November 2010

    Yes waiting can be difficult I am schedule for a breast MRI next two weeks it is going to be the longest two weeks of my life. At this point I am experiencing breast warmth and and I have read this can be the first symptom of IBC so I am very scared

    · Share on FacebookShare on Twitter
  • germangal
    germangal Member Posts: 97
    edited November 2010

    Virtually and Michelah,

    Do you live anywhere near a teaching hospital or a cancer center? If so, I really would ask your GP to get you a referral appt with a breast specialist there, stating that IBC is suspected. That is what my doctor did for me after I told her I was willing to travel to get an appt. She actually lined up 2 appts for me - one in Boston at MGH and one in Philadelphia at Fox Chase - for the very next day. I live about 2 hrs from Boston and was willing to book a flight to Philly if that was needed. Luckily, I liked the MGH dr's and they were able to take me on as a patient. If I had tried to get these appts on my own, I would have had a 3 week wait for an opening just to get confirmation of the diagnosis. And with IBC, that kind of delay can make a difference, especially if the symptoms have been around for awhile. Incidentally, GP also gave me antibiotics "just in case" the news was better than expected.

    Be really pushy and demanding this time ... you can be nice and polite later!

    · Share on FacebookShare on Twitter
  • michelah
    michelah Member Posts: 14
    edited November 2010

    well I live in the Caribbean we are certainly not in the forefront of IBC care/diagnosis. I saw a breast surgeon and after dealing with breast warmth for two months  he suggested that I go for a MRI  I have to wait two weeks because it is has to be after my period. However right now I don't know if I should press for an MRI or a biopsy

    · Share on FacebookShare on Twitter
  • VirtuallyMe
    VirtuallyMe Member Posts: 7
    edited November 2010

    I'm in southwest Louisiana- about 2 1/2 hours from Houston- so I will more than likely head that way- I have a surgeon appointment with a local surgeon next Tuesday- but the pain is much worse today- my breast is a full 2 inches bigger than the right side and although no redness I do have 2 areas of warmth- on the breast too- I'm just frustrated that I have been trying to get evaluated and keep getting passed on to the next doctor...

    I did see one specialist- but he was really off- and although I'd love for this to be fibrocystic breast disease and fibromyalgia- I know that it is not that...

    · Share on FacebookShare on Twitter
  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited November 2010

    I knew from the moment my "rash" appreared that it was IBC. My rash didn't look as bad as pics online but I thank God that the breast specialist didn't just pass it off.  So my advise is to continue following your gut.  It might not be IBC but your symptoms are indicating that something is going on.  Hang in there. NJ

    · Share on FacebookShare on Twitter
  • VirtuallyMe
    VirtuallyMe Member Posts: 7
    edited November 2010

    Still waiting- go to see a local surgeon who does most of the breast work around town- 2 of my coworkers were sent to him when their docs found lumps...

    Still swelling- last night my left arm was 2 inches bigger than the right and the pain is worse- I do have some faint redness- but I'm not ever sure if it is just position or really there- it is that faint- I can feel tons of lumps now it is almost like there is buckshot under the skin in my breast, axilla and arm...

    the wait is definitely the worst thing... if this is IBC I want to get treatment started ASAP- if not I want to know what it is and get that started too...

    the surgeon wants copies of all my old films- that show NOTHING- so I have to get new copies of those too...

    · Share on FacebookShare on Twitter

Categories