suspecting IBC or Paget's at age 28, pretty darn scared

strangelady

Hi everyone Earlier on I posted my intro in the Not Diagnosed But Worried section. I am unable to copy and paste so please  search my posts to read it.

Perhaps I'm jumping the gun and am getting much too anxious for my own good, but I'm terrified that I may have IBC or Paget's (see my original post for my symptoms). I am only 28 but I've researched IBC and to my horror found out not only was it the type of breast cancer more likely in younger women, but that it was also the fastest progressing.

I saw the PCP today and he said he would refer me to a specialist within two weeks. I go on vacation in three weeks and if for some reason I'm not seen by then my vacation will be close to ruined. And isn't two weeks a bit lengthy for a possible case of IBC? My symptoms have all developed within the last several months - most noticeably in the last month. If I do have the disease and it's progressing so rapidly, two weeks seems like an eternity. I read in another FM's post that a comparitively long wait may be due to lack of health insurance, which I indeed do not have.

I'm finding it tough to maintain any sense of calm right now. I realise it's not exactly conducive but I can't help it, or so it seems. Out of nowhere today one of my toes began hurting, and here I am stressing it may be because the IBC has metastised to my bones. For the last few weeks I've had what feels like a strained or sprained groin, hip and thigh, in addition to a painful right arm (it's my right breast that is affected), and I can't help but keep attributing these to a metastised cancer. I find myself needlessly over-analysing every little pain or itch.

Apologies if I'm overreating. It's just not so easy to calm down and try and put things in perspective.

Dawnlaszlo

Strangelady ,I am 45 year old women and I have been battle IBC for 19 months ,time is so very ,very important .Don't even give the insurance a second thought .. you'll manage one way or other .It started  with pain in my arm pit ,and then started to work on my breast ,and I went to Doctor after Doctor, and I was Diagnoised with everthing except IBC..insist on a biopsy ,on your breast tissue or lymph nodes.. you have ever right not to be calm,but try and stay focus until you get the answer you need ...but dont wait for anyone or anything .And if your not happy with you doctors ,answer go to a breast specialist . God Bless you...if I can help in any way please feel free to email me .

strangelady

Thankyou Dawn for your reply.



Unfortunately I live in the UK and without health insurance here you are thus subject to a tedious vetting process being shunted from one doctor to another before recieving a diagnosis.



I did see a PCP (in the UK they are known as General Practitioners) who refered me to a 'breast specialst', whom I saw within a week. 'Breast specialist' said I was too young to have breast cancer and refused to submit me for any test other than an ultrasound, for which I could be waiting 12 weeks.



Saw another GP who refused to believe I could have cancer, despite all my symptoms, but prescribed me a 2 month course of antibiotics...which when I read the leaflet are used for treating BRONCHITIS. WTH?! Are the so-called 'medical profession' in this country inept?



Today is a public holiday so surgeries are closed, but tomorrow I will try to make another appointment.



I will update asap.

Much love to you Dawn, and everyone else.

Claudia413

This is just so sad. The medical profession can be pretty inept here in the US at times also. I would hope that there are places you can turn to for financial help, as well as emotional support. I know we have some in the States and would hope that the UK would have some also. Hugs to you.

mzteeohh

Strangelady, your story is simular to mine. I too am freaking out. I am 30, and have NO insurance. Symtoms started as what I thought was a spider bite. 2 months later my boob is large, with a 6 by 4 inch area of red swollen orange peel skin, Nipple discharge, and stabbing pain with swollen nodes.the er sent me for a mammo after mammo they advized me to see a surgeon immediately. Not having insurance, the hospital got me in with a surgeon. My apt is the 7th. Do you have the ability to go to the emergency room? I am so full of questions. And as I too have had some unusual hip and leg pains I instantly start thinking that I have bone mets. I have educated myself considerably on ibxc, and even if it turns out not to be ibc, I will be spreading the message that breast cancer does not have to have a lump. You will be in my thoughts, dear.

strangelady

Thank you to everyone for the kind replies. I've been away because all that I could say would simple be the same as before. I am sat here now, having been turned away by six doctors so far, all noticing obvious IBC symtoms yet continuing to dismiss me as 'too young'. Turns out I was refused an ultrasound. My breast is yet bigger, swollen, constantly hot and with stabbing pains and a bruise-like rash, and has occasionally been leaking from the nipple now. I'm losing weight, my appetite is noticably decreased, I feel nauseous often. Yet NO DOCTORS ARE LISTENING TO ME. I don't know what to do, people.



Sorry to sound so dramatic but I'm overcome with worry and I can't help it. I think I've been issued a death sentence.

Faith316

Can you not make an appointment yourself with an oncologist?  If not, go to the emergency room and scream, holler, yell.  Do whatever it takes to be heard.  Make them research IBC.  You have most of the symptoms.  Time is of the essence.  Don't be polite and don't let them brush you off!  Good luck to you.  Please keep us posted.