Thanks Theresa
I’m getting a bity pee’d off with it all TBH!
Apart from anything I spent a fortune on pretty lacy bras a few weeks back and I cant wear any of them cos it hurts so I’m wearing my old dingy ones at the moment!
I suppose if nothing shows up on mammos/Ultrasounds it’ll be a needle biopsy next?
Wound’s not too bad, bit sore and stingy but I have lots of chocolate and wine to take my mind off it :o)
Muffatt x
Saw my cons again today and not very happy to be honest.
Had my stitches out, lab results for the serbaceous cyst were benign.
He was about to discharge me when I had to remind him that I still have burning pain in my right breast!
He examined me (again) and said he couldnt feel anything, he didnt have an explanation for the burning pain and THEN he says its my HRT causing the pain!
HE was the one who told me 7 weeks ago that I had nodulation and pain because I WASNT on HRT and that it was all hormonal, that I should be taking HRT along with 1000mg of oil of evening primrose! And thats exactly what I’ve done.
So he’s done a complete flippin turn around and has said we’ll have to wait and see, lets give it a couple of months as its probably you’re body getting used to the HRT. Come back in 2 months time and if its still a problem we’ll take you off the HRT… what the f***!!!
I am so f****** angry with this man, I dont think he knows what he’s talkiing about!
He’s telling me its a mystery and he has no explanation so surely the sensible thing would be to do some bloody tests?!
It’s not like I’m wasting NHS resources, this is all being paid for by my insurance company!
I really am at my wits end now and I dont know what to do? I cant ask for a second opinion because I’m being seen privately, my insurance company isnt going to pay for this all over again and Mr T is the top breast cons in the county so all the other cons will know him and who’s going to listen to me?
I’m really not prepared to let this go on for another 2 months but I dont know what to do now?
Muffatt
Can you not contact your Insurance company and explain the situation to them? I find the people on the phone at mine (Axa/PPP) are very helpful and understanding as soon as they know you have cancer. A referral to a different consultant just to get a 2nd opinion won’t cost them that much - or could you pay for that yourself? You obviously need someone else’s opinion or you won’t get any peace of mind.
Muffat - i am really sorry that you are no further forward…
I can’t remember have they ever done any blood tests…? Could you ask your gp if they can do any to see if there are any cancer markers in your blood…? I would phone the helpline on here again and ask their advice on second opinions when you are being treated privately etc…
How is your breast now? Are there any symptoms like colour changes, skin texture etc or is it really just a feeling of burning inside the breast…?
Theresa x
Hello Muffat
You really are going round and round in circles aren’t you? I really don’t want to panic you, but, I had no redness in my breast, the skin looked normal, no inverted nipple but the three prominent factors I had were that I had bleeding from the nipple (about 3 weeks after being told it was nothing, a very swollen breast which just got bigger and harder and a burning feeling inside my breast like mastitis (don’t know if you’ve ever had that).
I had a biopsy taken from discharge of the nipple, which was ok and I was not diagnosed until some time after.
I think what Theresa has said is worth doing, try to get a blood tumour marker and I don’t think you should wait for another 2 months with this discomfort. At the moment I don’t think HRT is a good thing to be on anyway, at least until they’ve done some further investigations.
I hope you don’t mind me saying my experience, it could easily be something harmless but you won’t rest until you’ve had a proper consult will you.
Good luck
Carole x
I’m sorry if I was ranting earlier, I am starting to feel like I am going round in circles and I think I’ve been incredibly patient too over the last 7 weeks, I’ve done exactly what he’s asked with the HRT and evening primrose and I was gobsmacked when he said the pain is to do with the HRT I’m taking and maybe I should stop taking it!!!
After spending most of the morning in tears and talking to my husband, trying to get some reassurance that I am not being neurotic about all of this he persuaded me to ring the insurance company and ask about a referal to someone else. I was convinced they wouldnt agree to it due to the cost.
I had a long chat with them and they agreed it was a little odd that Mr T has said he has no explanation for the ongoing and persistent problems but hasnt requested any further tests?
I asked about a 2nd opinion and they said I have to go back to my GP and ask her to refer me to someone else, provided that person is approved by the insurance company then they are happy to pay all the initial consultation costs and any new tests that need doing. I was rather worried that if I had further tests etc and they all came back clear and Mr T’s diagnosis was correct (it being hormonal and HRT related) that I would then get charged for wasting time and incuring extra costs but they have said thats not the case, they will cover the cost of all the initial consulations and any tests a 2nd cons wanted doing.
So as long as my GP agrees that there is something going on that needs looking into hopefully I can see someone else at either another hospital OR on another day to Mr T’s clinic. I really dont want to offend him or bump into him at another cons clinic!
Peacock - my symptoms are… intense burning, itching pain (like very bad sunburn) which is at its worst down the right side and underneath my right breast, this has spread all the way across my breast now and my nipple area feels tingly too, this is constant but does get worse at certain times. I am still getting this sensation like someone pouring hot liquid across my breast which lasts for a minute or two and my breast feels heavy and my bras all feel like they’re digging in.
I have no redness, discharge/bleeding, inverted nipple or obvious swelling.
When Mr T examined me again today I was lying down, he placed a hand on top and below my breast and gently squeezed (like a mammo) and it was quite uncomfortable. He was dictaitng a letter at the end of the appointment and mentioned something about mastitis-something or other
I’m seeing my GP on Friday morning so fingers crossed she’ll agree to a 2nd referal.
Muffatt x
I completely understand your frustration.
If you have no confidence in this guy then you must get a second opinion, it’s ridiculous to expect you to wait another 2 months when there has been no change in your symptoms.
Do give your insurance company a ring.
Love
Jackie
Our posts crossed!
Great news from the ins co.
Can’t remember from your earlier posts but have you had any antibiotics prior to surgery?
Take Care,
Jackie
Hi Mabel
Yes I did have strong antibiotics when I first saw my GP at the end of February, they made no difference.
My symptoms have gradually got worse and this has been going on since mid February.
I just hope my GP understands that I need to get this resolved so I can get on with life, I’ve been in limbo for the last 3 years with severe endometriosis and I want my life back without having this hanging over me.
I want nothing more than for Mr T to be right, that this is hormonal but to make me wait another 2 months to see how things go when there has been no improvement so far is unfair and unreasonable.
Muffatt x
Absolutely agree with you.
Good luck with the GP appt. Please let us know how you get on.
Jackie x
Saw my GP yesterday, had a long chat about everything that has happened since I last saw her at the end of Ferbruary and explained my concerns about Mr T’s turn around on his original diagnosis.
She was fine about referring me for a 2nd opinion and I will be seeing the specialist breast consultant I was supposed to see first time round. Just to explain… I was originally referred to a Mr Giles Cunnick but when the hospital rang me to book the appointment I had to wait over a week to see him or a couple of days to see Mr T, so I went with Mr T.
I have to pick up a referral letter from the surgery on Tuesday morning and then ring the hospital to book the appointment. I know Mr Cunnick has a clinic on Tuesday and Friday so fingers crossed I’ll get to see him next Friday.
Muffatt x
Muffatt - glad to hear that your gp was supportive and really hope you get to see the new specialist as soon as possible…
Theresa
Excellent news!
At the time of my dx and referral I was given a very similar choice.
I was dx very near Christmas and was told I could see Dr R the following week or wait to see Dr S the first week in Jan (he was away on hols till then).
I wasn’t too sure what to do and didn’t know I had IBC at the time so asked the surgeon giving me the option for his opinion. He simply said he works mainly with Dr S and at the time this was enough for me to say I would wait to see him then.
I’m so glad I did!
During the course of my treatment I did come across Dr R and a more rude, self opinionated twat (!) you’d be hard pushed to find!
All the luck in the world with your referral, I shall look out for your next post ((hug))
Love
Jackie xx