Waiting on tenterhooks for apt

Hi. was wondering if anyone can advise me. I found a lump in armpit bout two months ago and went to see nurse who said it was nothing however it is still there. Last week went to see doc cos found a lump, doc described it as ‘egg shaped’ in breast. Skin above where the lump is is a different shade to the rest and nipples have been itching for weeks. Have been referred to Breast Clinic but apt is not until June 29. Have tried to get one earlier but none available. I am usually quite calm and worry more about everyone else than myself but am now really worried because of all of my symptoms. The wait seems endless and havn’t been sleeping too well.Can anyone tell me, honestly, if they have had similar symptoms or offer any advice? thanks

tessamae - sorry to hear that you are going through this worrying time… when you say the skin is a different colour to the rest - what colour is it…? have you spoken to the breast clinic on the phone asking if you can take an earlier cancellation? i would also mention to them the fact that the skin has changed colour - i have a rare form of breast cancer and my first symptom was that my breast had turned pink… (i don’t want to worry you by saying that - but it is an unusual symptom and my gp didn’t realise it was important…)

i really hope that you manage to get an earlier appointment and that the news is good

theresa

just to clarify - i am very pale skinned and in my case the skin had turned pink… in other people the skin turns red, and for black or mediterranean skins it can almost look purple…

hi…i too am very fair skinned…the coloured patch of skin is a darker shade to the rest of the breast, it is pink/brown. The day i went to the docs, it was very pink and hot to the touch. The only way i can describe the texture is like a piece of fruit. When you have a bruised apple, the part of the apple which is bruised feels soft and dimply. Have phoned the breast clinic today and told them i will take any cancellation which comes up but so far, it is looking like June 29.I am tryin to be positive, but am really scared and worried about this.

Did you mention the skin changes to them…? I think you need to call them back and tell them the skin is pink, hot to the touch and dimpled… Ask to speak to one of the breast cancer nurses (rather than an admin person…) The type of cancer i have is called Inflammatory breast cancer - and it does match those symptoms… we do have a subforum on here for IBC i’ll just go and get you a link to a thread where someone asked us what the symptoms are etc…

breastcancercare.org.uk/forum/viewtopic.php?f=103&t=21471

Theresa

Thanks Theresa.Your honesty and advice is most welcome…friends and family are worried but keep skirting the subject to take my mind off it…GP saw that the skin was red and hot to the touch…mentioned skin changes to him and told him sometimes it is hot, sometimes not, but he just said he would refer me to the breast clinic…have phoned them today and spoke to the consultant’s secretary at the Breast Clinic, she said as soon as an appt comes up she will try and get it for me.The lump is hard and doesn’t move, about the diameter of a penny…it si sore but only when i press down on it…feel like im going mad being so worried when i dont even know what is wrong.

Tessamae - i hope they get you an appointment soon - it is hard sometimes on this part of the forum - when you want to advise people to try and get as quick an appointment as possible - but without scaring the life out of them… to also give you some hope - it may also be that you have got an infected cyst which is causing inflammation - but either way it is best to get it sorted sooner rather than later…

theresa

Thank you for your advice Theresa.I will definitely keep pestering for an earlier appointment to put my mind at rest and get to the bottom of it once and for all…I will keep you posted…

hi,
i too had a long wait after presenting at my gp’s with a lump - i was told i was not a priority due to my age and no family history. As a result i waited over 3 weeks to see breast specialist - who prodded me and said it was probably hormonal, then another 3 weeks for an ultrasound app. At the ultrasound, i was then rushed in for a mammogram and a day later for a biopsy - at this point it had been 7 weeks since seeing my gp. The nurses informed me that i should have been seen within 2 weeks. I have since looked into this - NICE Guidance(National Institue for Health and Clinical Excellence) does recommend women over 30 (i’m 35) are treated as urgent if their lump persists after their next period and should be seen by specialist within 2 weeks.

It may be useful for you to speak with PALS at the hospital you will be attending armed with this information and see if they can do anything to help speed up the appointment.

I’m sure there is no urgency for you and although mine turned out to be cancer against all expectations, i have been assured that nothing will have altered in the time that i spent waiting. This obviously doesnt take into account your mental health though - mine suffered terribly! They dont seem to be in any rush, which should be reassuring but in fact i found it to be quite the opposite.

I’m still playing the waiting game following my surgery - was told it would be 2-3 wks but is in fact 4 wks! This time though i’m trying to take my mind off the wait by taking up peoples offers - going out, walking, exercise, day trips - keeping my mind occupied by other things (costing me a fortune but worth it for the fact that time goes quicker when you spend it with friends!)

I hope you get things sorted and that its good news.
in the meantime take care of yourself and keep busy!

Hi,

I think it is the GP that dictates the time waited. When i got an appointment within two weeks, (in actual fact got one the week after but the letter came after the appointment!!) I noticed on the form i was ticked against ‘clock ticking’. According to a nurse, this is how you are graded when sent for an appointment. There was one ‘clock stopped’ which was very urgent and i cant remember what the other one, but that was the less urgent one and possibly the one you have been put under. Different authorities might have different criteria but it might be worth telling your gp how distressed you are and seeing if he/she can bump it up for you.

Despite being given a two week appointment. the breast consultant didnt think it was anything terrible despite my insistance that i regularly examined my breasts and had never presented with anything like this before. I had two wait another two weeks for my mammogram/ultrasound although to be fair, he did do a fine needle aspiration. A very subdued doctor saw me two weeks later, told me it was very likely i had breast cancer and did a biopsy. I got the news a week later. Went from Mid october to beginning of December.
Unfortunately you do have to do a lot of waiting but there is a directive which all hospitals follow in that, if you do have breast cancer, there must be no longer than three months between your first appointment and treatment plan which may be surgery or chemo and surgery if lump is found to be large.

I had full mastectomy and am about to have my last chemo today. I will be having radiotherapy after. I was unlucky in the fact that despite the fact i went to doctor as soon as i found something strange, it was like a thickening with beads. It was lobular cancer which can take time to present itself so mine had spread to lymph glands. Fortunately it had not spread anywhere else and it is hormone receptive which means i can be cautiously optimistic for the future.

Dont wish to scare you and have rambled on a bit but i was a bit naive at beginning and think it helps now to be as well informed as possible.

All the best and hope it really is nothing.

Linda

thanx for all your advice guys…i find myself feeling the lump first thing in morn and lastthing at night…am trying to focus on kids and work but concentration isn’t great…just wondered if anyone could tell me something…if it was anything serious, would there be other symptoms too…for example, would i be feeling tired or unwell or out of sorts… im gonna do everything i can to get an earlier apt cos a month seems like eternity…

Hi again tessamae…:smiley:

We had a thread about this earlier this year - but i can’t find it anymore… Alot of people were saying that they had been having dizzy spells or feeling tired in the months leading up to their diagnosis… But there were other people who said they had noticed nothing unusual…

I went through a spell of feeling dizzy, and having vision problems (I went and got my first eye test only a month before i was diagnosed…) I also found that when I was typing i would look back and see I had added an extra word that made no sense in the sentence… The weird thing is I was doing that several times a day… but havn’t done it at all since I started treatment…

Theresa

I do seem to be always tired just lately but i spose that is to be epected with two young kids, full time job etc…but the vision in my left eye has been blurred on and off for months…optician said eyesight is fine though and told me to make sure to wear glasses for reading/writing…I know it is early days yet, that I haven’t been to my apt and don’t even know for sure what is wrong, but i am really worrying about this now…my optimistic outlook is taking a bit of a hammering…my symptoms, put together, do not look very promising, and as i seem to have no choice but to wait til June 29. i keep telling myself there is a 9/10 chance it will be nothing serious, but there is a part of me telling myself to be prepared just in case as i understand they tell you the results on same day at the breast clinic.sorry for harping on when my concerns seem so much less serious than others…

Tessamae {{{hugs}}} honestly your concerns and worries are just as real as the rest of us… If you have a quick look at some of the other threads in this section you will see how worried everyone gets waiting to be seen… but hopefully it will also help to see how often people post back to say they have been given the all clear and problem turned out to be a cyst or fibroid…

We always tell people that this waiting period is the worst… and then get asked - how can it be the worst? Surely actually getting cancer confirmed must be? To be honest at the moment your mind runs wild - imagining worst case scenarios etc - if (and it is if…) you actually get diagnosed at least then you can start a treatment plan and start fighting back…

Keep posting, and i do hope you manage to get seen sooner…

Theresa

Dear tessamae,

Just to remind you that while you are going through this waiting period, our Helpline advisors are there to offer emotional support and advice. Please don’t hesitate to call. They are open 9.00am - 5.00pm on weekdays and 9.00am- 2.00pm on Saturdays. The number is
0808 800 6000

Kindest regards

Janet
Facilitator

thanks everyone…will keep you posted…

hi…coukd someone please help put my mind at rest, am driving myself mad…my breast seemed to have shrunk a little bit last night, or changed shape.I am usually quite big busted but can now press my breast almost flat with the pam of my hand…husband said he can’t see any difference but it feels different to me. also, have had a couple of drops of white coloured liquid come out of nipple whn i squeeze it…my daughter is now three and only breast fed her for two months - could it still be breast milk after all this time…last night, my breast seemed to be sloshing, although today it is not, it just feels very squidgy, as though there is no muscle there at all. I feel like i am being paranoid about every little change but would appreciate any advice from anyone

Tessamae, not really sure what it could be. I would say go to your gp as any change in the breast should be looked at, it’ll also put your mind at rest. I remember a friend telling me she had a milky-like discharge from her nipple a few years ago - when she was in her 40’s so not in any way connected with breastfeeding. I believe it turned out to be an infection. Perhaps someone else on here knows more about it? I absolutely agree with you that we know our bodies best and can detect even the slightest change. Get it looked at by a doctor and take it from there. Sure it’ll be fine, try not to worry (did I really just say that!!) and let us know how you get on. The advice and support on here is phenominal, if you need to use it, do. All the best Pat x

Sorry Tessamae, just read the rest of the thread. Most hospitals have a 2 week wait target - this is for urgent referrals for anything suspicious. As I’m sure you know, most lumps are innocent, but my gp treats all lumps as suspicious in the first instance unless it’s obvious that it’s not. The lady who suggest PALS at your local hospital is spot on, give them a ring, but I’d be very inclined to ask your gp to upgrade your referral. You’ve mentioned changes in the breast since original referral so this could make a difference. I work in the nhs and referrals can get lost, overlooked etc. In my case my gp faxed over a 2 week wait referral and I was seen within 2 weeks. Trusts targets and policies will vary but I believe the 2 week wait is pretty much standard. The wait and worry can drive you crazy and unfortunately there is a lot of waiting, but push for an urgent appt, the gp is there to help you, after all. Do let us know how it goes. Pat x

My breast has changed in the last couple of days, when i lie flat on my back, the patch of discoloured skin, which has faded slightly now but is still there becomes, puckered and wrinkled.am really scared cos ive done a bit of research an it looks just like peau d’orange. however, when im wearing bra and standing with arms by side, the skin still feels different. wrinkly and loose, but the ‘orange peel’ is not so obvious… what couldn this be…