Symptoms are back, but they won't refer me

Cheyne · October 2010

Hi there,

About a month and a half ago I woke up on a Saturday morning with a very painful left breast, a rash on the breast and a hard mass under the affected area, as well as pain in my under-arm on that side. I took myself to an out-of-hours doctor who told me to see my GP first thing monday morning. On monday the rash and lump were smaller but I went to my docter who referred me to the breast unit at the local hospital.

The breast unit at the local hospital gave me an ultrasound scan. By this time the rash and lump were almost gone. The docter who gave me the scan saw no lumps in the scan and said he wasn't worried. He said my lymph nodes in my under-arm were enlarged, but he was not concerned. He said to come back if I had any more symptoms or cause for concern. So I went home. The rash disappeared and so did the lump, although the skin remained a little unusual - slightly puckered.

Now I have woken up this morning, a month and a half later, with the same symptoms: I have pain in my breast, a lump in the breast, a rash over it (near the areola like last time) and pain in my under-arm on that side - but this time it is all on the right side, whereas last time it was the left breast.

I've been to a docter this morning (a different one than last time) and she says she is not concerned about the lump, rash and pain and she refuses to refer me back to the breast unit. She says it is highly unlikely it is cancer as it is in the other breast this time.

I don't know what to do. I asked her to refer me or arrange a biopsy and she refused. I have other symptoms which I haven't mentioned to her- night sweats, nausea, recurrent outbreaks of mouth ulcers, stomach pain after I eat and I've been spotting since 9th October - but I haven't mentioned any of these other symptoms because I want the docter to take me seriously about the breast lump, rash and pain.

Please give me some advice... Frown

chrissyb · October 2010

Hi cheyne, in Australia, a referal to a specialist lasts for 12 months so you can go back in that 12 months without further referal unless it is a different problem. Does your system of healthcare offer the same sort of thing? If it does, you don't need another referal as it is the same problem and the doc at the breast unit did say to come back if you felt it neccessary. Give them a phone call and check. The problem is obviously doing horrible things to your thoughts so you need to get checked out. Good luck.

Peace, strength, love n hugs. chrissyb

Cheyne · October 2010

Hi chrissy,

I'm in cambridge, UK. I just phoned the breast unit after reading your message, and they said that as I was discharged after I last saw them their protocol is that I have to get a doctor to refer me back, but they said "your doctor can't refuse to refer you back to us, it's very wrong of her". They advised me to see another doctor asap and get a referral. So I've phoned my surgery to do this (gotta phone back in a little while as they're closed for lunch now).

chrissyb · October 2010

cheyne, that's really good. I'm glad you rang them and are now going to see another doc to get a referal. Let us know how you get on at the breast unit and what they find. Hoping all your worries are for nothing.

Peace, strength, love n hugs. chrissyb

Cheyne · October 2010

I don't know what to do, I'm so upset. My surgery have phoned me back to say that they are all in agreement with the decision of the gp who saw me this morning - who decided not to refer me back to the breast clinic. So now I am just expected to sit at home with a painful lump in my swollen breast, a raised rash over it and pain in my under-arm and I cannot see a specialist or consultant. I am so upset about this. I know there is the option of going private - but I phoned a private clinic and they said that it would cost over a thousand pounds! Frown

chrissyb · October 2010

Cheyne, don't sit on your hands be proactive. Give the breast unit another ring and tell them that the doc still refuses a referal and ask them for advice. Good luck.

dlb823 · October 2010

Cheyne, have any of the doctors you've seen suggested to you what might be causing your symptoms? I think that's what most concerns me about your situation. Not that I think you have breast cancer, but that whenever something is amiss, I think we need to push for a specific diagnosis, so that it can be treated, as well as bc ruled out. It certainly does sound like some of your symptoms taken together (and I think this IS important) point to a possible hormonal imbalance, and depending on your age that can be due to anything from pregnancy to menopausal symptoms, etc. Are you on any hormones or prescriptions?

I don't fully understand your medical system in the UK, so perhaps others will be along who do and can give you some specific guidance. But I would definitely (without panic) press for a diagnosis, but including all of your symptoms, because there's a good chance they're related.

Good luck, and please keep us posted! Deanna

Cheyne · October 2010

Hi there, thanks so much for all your support, I haven't sat on my hands - in my angst I sent a letter of complaint to the health ombudsman (as I've already had a form of response to my formal complaint this morning) and then I spoke with the director of the nhs complaints team in my area - who says she will have a chat with the practice manager of my local surgery. She also said I must insist on a second opinion and so I've just spoken with my surgery who initially said they were full up, but after I spoke with the office manager she fit me in for an appointment with another lady doctor this afternoon. When I go along this afternoon I will keep an open mind but insist they investigate my symptoms - cancer or not something's causing this, and I can't sit around at home with a painful lump and rash and no explanation for it. I'll let you know how it goes, xx

chrissyb · October 2010

Yay! Good for you.....way to go...that's the fighting spirit. Yes I agree, you need answers as you don't feel what you do without reason. Stay in touch.

Peace, strength, love n hugs. chrissyb

imbell · October 2010

Cheyne, in a bureaucracy you just keep asking fior the next person higher up. I actually wrote to the Minister of Health in Manitoba. The answer came back from my local cancer centre.If they give you the same run around, ask for it in writing. You and your GP are entitled to any medical records. I am assuming you have the same privacy legislation we do. We tend to follow your example. Do you have a College of Physicians and Surgeons. Ours take written complaints seriously. If they don't think it is cancer, tell them to put it in writing. Another thing is we are really short of oncologists here in Canada compared to the States. I had to ask for a second opinion to get a different oncologist. I was told I could ask for a second opinion by my radiologist. He put in my request.

Cheyne · October 2010

Hi there, after all the complaining I've done today I went to my second opinion (at the same surgery) just wanting not to appear to be unreasonable. I also expected the doctor to not want to appear to be disagreeing with this morning's doctor. I tried to show how reasonable and calm I was. The doctor looked at my breast - the rash and lump are bigger now - and said that if the lump and rash did not 'calm down' in two weeks she would consider referring me back to the breast clinic. I said this was too long and we compromised on one week. But now I'm home I feel I might have been way too soft Frown

. I was at the breast clinic with these same symptoms just a month ago and they should be re-referring me back there - not hanging around. She also made it clear that if things were the same in a week she would 'consider' what to do (i.e. not necessarily refer me to the breast clinic). What's wrong with these people? When I spoke to the breast clinic on the phone this morning they said they didn't understand why the docter was not referring me back straight away. Should I ask them to refer me privately to a private consultant? Does anyone know how much that is likely to cost in the uk?

ElaineM · October 2010

Can your GP do some blood tests to see if any tumor markers are elevated? Can he or she authorize some scans? If the breast unit won't see you can you get a second or third opinion or go to your gynecologist for help and referrel? If all else fails I would go to the ER and see if they can help.

ElaineD · October 2010

Hi from a fellow Brit!

Am sorry to say that you probably won't be able to access the private route. You would still need a referral from your g.p. before you could be seen privately by a consultant. If they are not prepared to refer you through the NHS, then they would see little cause to speed up the process by sending you privately.

I don't think waiting a week, with our systems is an excessive amout of time/delay. Sorry I can't give you more hopeful news-but however you get seen, you NEED a g.p. referral first. You could turn up at the door of a private clinic, cash in hand-and would still be told to return only if your g.p. referred you.

Finally, I don't know how much it would cost nowadays to have the initial testing done privately. I went this route 13 years ago when diagnosed with primary B.C-and think it was probably in the region of £1,000.

RebzAmy · October 2010

HI Cheyne also from another fellow Brit

Before my NHS appointment when i first found my lump, I booked myself in to see a private consultant who was highly recommended to me. It cost between £100 or £150 (can't remember exactly) and included the consultation and an ultrasound scan. The consultant knew what he could see and feel and to cut a long story short, i ended up going with the NHS who were amazing. So what I'm saying is you can book yourself in to see a private consultant if you are paying. I also recently wanted a full body check of my moles/marks and it wasn't through my GP - I paid for it.

Hope this helps

Rebzamy xx

momof2greatkids · November 2010

Hi Cheyne - I have checked every day for an update - how are you doing?? Please let us know, God Bless.

misskc · January 2011

Yes...how are things Cheyne?

xx

Cheyne · June 2011

Hi there, please help, I am in a mess again. I have just found out I'm pregnant (conceived 2 weeks ago) but I have been having worrying symptoms in the same breast again. I would dearly like to put it down to pregnancy but its been bothering me for longer than I've been pregnant. My left breast - exactly under where the last red blotch/little lump was - has again got a lump. Not a blotch this time or tiny lump but a great mass.I think it may extend round the whole outside edge of the breast. It is not in the skin or flesh but deep in the mammary. And there is a hard lump on the inside corner, just where the last little lump was. The whole breast is painful and the pain interrupts my day - when I'm doing something random like running down the stairs, leaning on the edge of a table or putting my arm up. The breast seems bigger than normal, and mammary seems swollen and the whole mammary hurts, especially the mass/lump which is focussed at the bottom, centre-right of the breast under where the blotch/lump was last time. It did indeed seem to go away last time.

Please tell me:

Is it possible for a breast cancer to be in the mammary or whatever that dense circular thing is inside your breast - not skin or flesh?

Is it possible to have breast cancer symptoms that seem to come and go over what is now a year and a bit?

Is it possible to have a painful mammary as a symptom of breast cancer?

If it was IBC would it be possible for it to take this long?

Please, please help.

Cheyne · June 2011

P.s. the areola does not get small anymore - e.g. when its cold, and its always bigger than the other one which is unusual

mrsnjband · June 2011

I wouldn't think IBC symptoms would come & go, so in my humble opinion I would not think in that direction.

But pregancy can intensify your symptoms. We had a friend who discovered her breast cancer because of the pregnancy. In her case she wouldn't have known she had bc. That breast didn't change like the other breast.

So tell your doctor of your new symptoms.

Sending love & support. NJ

Cheyne · June 2011

Thank you so much for your response. It has put my mind at ease a bit and helped focus me on what I should say to the Doc tomorrow. xx

Cheyne · June 2011

Hi there,

To update, I saw the Doctor at my surgery today and she examined me and was not happy at all. She said that BOTH my breasts are very 'dense'. She said the denseness in the outside edges might be explained by pregnancy but that my left breast had a very different and distinct mass in it - just where I have been feeling the mass and pain myself. However, she also recognized that this lump seems part of the larger denseness/mass filling the whole breast. She said it needed to be 'looked at right away'. She told me the breast clinic at the hospital will be in contact with me quickly to arrange an appointment.

My concern is this:

Last time I went for an ultrasound on this breast a year ago at the breast clinic they said IBC would be easily detected on ultrasound. When the ultrasound was clear they did not do a mammogram or biopsy - they just sent me home and discharged me - so I couldn't go back of my own accord.
- do I really have time to waste with a clinic which was so poorly informed on IBC and which may do the same shoddy job of checking me again? - should I just request to see a private specialist right away instead of wasting time with the hospital breast clinic?

- or should I hope the breast clinic have become better informed in the last year? or that I may have a better Dr/specialist see me this time? - or could I refuse to leave the premises until I am given a biopsy?

I am worrying based on the assumption that I have IBC (which can't be detected by ultrasound) - but an important question I need to ask you ladies is this - my rash/bite type mark first showed nearly a year ago (last August) - causing me to be sent for that ultrasound. If I do have IBC could it really have taken ten months to get to the stage I am at now? Or does this long length of time rule out IBC?

Another concern I have is this - my symptoms in this breast have 'lurked' since last August. But they have flared up in the last 3 weeks. Suddenly my breast is larger, sore, hard, massy. It is 3 weeks and 5 days since my last period. I have just read that IBC responds to progesterone. My progesterone would have risen in anticipation of ovulation. Then, after fertilization the progesterone would have rocketed in order to maintain the new pregnancy - could this flaring up of possible IBC-type symptoms be an indicator of IBC because I have rising progesterone levels from the new pregnancy and IBC responds to progesterone? I have read that a significant number of young women diagnosed with IBC are diagnosed during pregnancy.

I am so worried. Please tell me what you think of all this. Please advise me. Please help. What would you do if you were me? How can I get myself a biopsy? xx

PLEASE PLEASE RESPOND. I AM 32 AND I DON'T KNOW HOW TO GET THE HELP I NEED.

leisaparis · June 2011

I would say if there is any way you can copy & print out some of the IBC info, to take it with you. If they say it isn't then show them the papers and demand a biopsy if that will make you feel better. In my personal opinion I do not think it could be IBC just for the fact that it has been so long. IBC is very aggressive and I think it would have shown up a lot sooner that this. But still, this may be now and wasn't before. IBC does come on very quickly and in some instances exactly the same place as a previous problem. I'm not saying it is or it isn't, but it is something you need to get checked out right away. Good luck and God Bless

Symptoms are back, but they won't refer me

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