Hello,
Its been 10yrs nearly cancer free. But found a lump on my other breast suddenly appeared. And gp has fast tracked me but breast clinic rang me to say theyre doing a big system change over have reduced clinics and are trying to see irgent referrals but will 2-3 weeks before they cintact for app. Im in melt down as my doctor wanted me seen really quickly. Ive been told they go on date referred on letter nothing else.
My nursing friends told me to book an assessment privately. Ive managed to get in (theyre all chock a block I guess because of the long delay to assess). Its very expensive and as am now retired I dony have loads of money but cant wait 4 weeks. Its the biopsy that costs thousands but dont have much choice and they tell me thry have a loan scheme. Goodness help me!. My bc last time was very aggressive (stage 3B grade 3 estrogen & Her2+ so had the full eorks and DIEP). Listed high risk for reoccurance. Ive rang my gp to tell him what BC said. Turns out he now only works ine day per week. My nhs breastcare nurse told me things are very different to when I went through last time…long waits etc… this has scared me as cant really afford to wait long time hence my reaction & booking private for assessment bit.
Am I scared…yes!!
The aggressive treatment had consequences and 2 1/2 years ago I had msjotmr heart surgery as it affected my heart. Am much better now but doubt ny heart could take a kicking from chemo.
Of course its a dont know but my new lump is hard & immovable gp thought 3cms already. Anyway am gibbering on as yes am tryi g to keep calm & carry on. Apologies!
Dear Waveylocks
We are here for you, what a terrible time you are having at the moment, unfortunately the waiting time is not good at the moment together with the doctors strike.
If this was me, I think I would just wait at the moment there’s always a possibility of an earlier appointment coming up, as for going down the private root this can be extremely expensive, keep in touch with your GP surgery let’s them know how anxious you are, maybe they can push your appointment forward.
I do wish you well, take good care of yourself and all the help offered.
With love Tili 
Thanks Tili for your kind words. Im not sure tbh whether its best to wait. I think locally its not running well at the BC. Ive now met 3 people who have all done the assessment part privately. The delays are long. Much longer than last time round. If GPs were easily contactable I would wait but its very hard to have much contact at all let alone consistancy.
Ive tried to speak to my old BC nurse but unable to get through & left a message. She told me a while ago that things are not like what they were…
So I think all in all my confidence is broken. Its a difficult call. I will try ringing my bc nurse agsin. See what she says.
Thank u! 
Sorry for your worries, I was just thinking could you be referred to another hospital? I don’t know where you are based, but if travel out of area would be preferable and more manageable financially? Private health care is phenomenally expensive, and you may start on a road that will spiral financially very quickly, as getting one result still isn’t going to push you further up the waiting times? or is it? I know things have changed predominantly for the worst in most areas of the NHS, but areas can sometimes make a difference. Wishing you well.
Morning Wavylocks I am so sorry that you are experiencing such additional stress because of the system.
I faced a similar dilemma a few months ago.
My stage 3 breast cancer in 2013 was aggressive and treated by mastectomy, chemo, radiotherapy and he Tamoxifen for until 2023. I was advised not to have a reconstruction due to the radiotherapy.
My 10 year survival prognosis was 50%.
In March this year I was diagnosed with a recurrence in my chest wall. It took a long time to have the necessary CT scan to identify if the cancer had spread elsewhere and see the oncologist.
At this point I considered paying privately but my decision was not to. This was because the high cost privately would just be the start, I couldn’t afford to continue treatment privately so felt yes I would know more but still be waiting on the NHS.
Please remember treatments have moved on so much over the years. I now have hormone therapy tablets daily and a targeted tablet daily for 3 weeks on/1 week off and am in cycle 3. I can visibly see the nodules in my side have diminished and will have a CT scan after this cycle to see if treatment is working.
I would encourage you to reach out to any groups in your area where you could meet fellow cancer patients possibly in your situation. These charity’s can often offer mindfulness and alternative therapies which may help your stress and anxiety.
Hope you get answers soon xxx
I’m so sorry to read your post. It’s very upsetting.
From what you’ve said you could be waiting 4/5 weeks just to get your appointment.
This is obviously very stressful and worrying for you as you have been here before and I am deeply sorry you have to go through this.
Changing a system is not a patients concern and should not affect a waiting time. It’s quite shocking to read that as their excuse.
I was thinking, what would I do? I think I would keep calling my BC nurse. Keep asking her what’s going on, when will I get my appointment. Make a nuisance of yourself. I have no idea if this would help but I think that’s what I would do. I wouldn’t be able to afford going private and as I understand it once you go down that route you stay in it.
This time scale, just to get your initial appointment is far too long and with your history too. The NHS have a policy to see cancer patients within a time frame. You will miss this by the time you get your appointment.
I too had to wait for my initial appointment for my breast cancer diagnosis, partly because it fell over Christmas (2024). Then again because of ‘Easter break’ as my first op wasn’t successful. A later excuse was annual leave at the lab, no one else could get my results done as once assigned to a member of staff they couldn’t reassign it to someone else! Another week wasted. It was extremely stressful waiting those extra weeks and they all added up. I was shocked and would rather had not been given any.
I’m hoping that they will fast track you to treatment knowing your history. You shouldn’t have to wait this long. New system or not.
I do think more should be done to help people going through a cancer diagnosis and treatment. I returned to work after 6 weeks post mastectomy (3rd and final op) which was too soon but I needed my income back as my sick pay ran out after 5 weeks. That’s just looking at the financial implications not the waiting times to be seen. I chose a second lumpectomy knowing I wouldn’t be off work for so long. It’s all wrong isn’t it.
Much love to you and please let us all know how you get on xx
Thankyou Vickymg for your kind words and suggestions. Im afraid I’ve not had a good experience of bc nurses in my area. They were not helpful 11yrs ago first time around. Compassion understanding isnt on their list…
I went for a private condultstion with mammogram and ultra scan. My.phydical.presentation is one of bc but sadly scsns were inconclusive. So a biopsy is needed which cost thousands. I cant afford it.
You can switch back and forth from nhs go.private go nhs. Happens a lot.
Anyway consultant said 50/50 necrosis or bc. Not metastic as gp wrote on referral, not reoccurrance but would be a new cancer…treatable & curable is their approach but involves going through it all over again. … The nhs bc nurse rang me back says they now reckon its 4 weeks & will be seen mid Aug is the booking clerks estimation.
The compassion and understanding I received at my private consultation assessment was in start contrast to the nhs. I wish I had the money to continue but I dont.
Am so sorry about whatz happened to you. Driven back into work and having to make choices based on financial need is sooo stressful and wrong. I feel for you.
Thank you. Your kind words mean so much and zi hope things settle for you too xx
Thanks Resn. Am so glad they are looking after you. Im deemed high risk for it coming back too.
I difnt leave the nhs system but yook asvice privately. It cost me but am glad I fid it. As it removed dome if the inaccuracy such as being yold its metatastic.
Hopefully nhs process will start mid Aug. But in the mean time Im clear sbout what Im facing which Ive found helpful. Xx
Hi Waveylocks, well I’m glad you have had some investigation.
4 weeks still seems like a long time but the news you have received from your private consultation is positive.
I know with my experience I wish I’d had gone with my gut and had a mastectomy back in Feb (op no. 1)
I’m keeping everything crossed that you will have a positive outcome this time and that will be the end of your cancer stories for good.
Please let us know how everything goes.
All my treatments were in Prince Phillip Hospital, Llanelli. A whole ward dedicated to breast care. I had my own room, with en-suite and tv, just like a hotel, incredible. The staff were fabulous. I’m so sorry that you haven’t had this experience. That’s just not right.
A little background on me, I’m 56 (just) English woman, living in wales, sometimes it can be hard being a ‘foreigner’ so you can sometimes feel down about people’s attitude towards you, luckily that wasn’t the case while I was getting my treatments.
I’m sending you a big hug and lots of love.
xxx 
Hi Vicky,
Thankyou for your lovely message. Wow that sounds a very swish stay in hospital.
So yesterday the nhs rang me with an app today. My nursing friends think my private consultant (who also works in nhs) had a hand in that. They all know each other. So have been examined, 2 biopsy’s and a marker, mammogram to check. Back for results in 10days. I feel much happier that its all in hand and I am in the system.
My initial diagnosis was after a private mammogram for which I paid £500 because I could not face waiting for an NHS appointment as I knew already that it was cancer ( you just do ) . From then on in my care was NHS in fact within 48 hours had had biopsy confirmed type two weeks later and surgery two weeks after that . Four weeks from mammogram to surgery. It’s not the case if you have a private mammogram you have to pay for the rest and I don’t see why it would be for a CT scan I couldn’t possibly have afforded to pay for the rest but was desperate for a diagnosis fast . Pretty sure it saved me weeks of stress and possibly a mastectomy
YES!!! fantastic news. No more waiting for weeks and weeks.
Please share your results with us if you want to. Keeping everything crossed for you. xxx
Thanks Vickymg. So back on the 13th. No time given yet. But am going away for a few days so great distraction. Given private surgeon rated it as a 50/50 chance of bc or fat necrosis Im hoping that means I have a fair wind towards the latter. I didnt ask questions of the nhs surgeon as they really dont know…& I guess incase she gave me worse odds!! 
A little bit of ostrich going on! Not like me!!
So chilling out today am really exhausted from all the drama.
Will post ip when I know. Xc
Thankyou…so I discovered. Not got my bill yet but it involves consultaion msmmogram and ultra scan. It wont be cheap. But I think it got me in weeks esrlier for nhs app because she said she was going to email the specislists at the nhs clinic. So was worth every penny! Phew!
So today had an appointment at the hospital for my results. But then a private call csme in and itwas a doctor to say it was cancelled. She told me the biopsies had come back inconclusive. So they want to repeat the whole assessment again. She didnt explain why this result had come out like that on two biopsies. Am confused. She just said theyll send a letter in the post with new app. Then gone. My son was on his way up on the train…Had to ring him yo tell him it was off. Am spedchless and cant figure out how teo msmmogram two ultrascans and 2 biopsies are sll inconclusive!! Yet thry all show the lump.
@waveylocks so sorry to hear this its just unacceptable isnt it . We had left our housr one hour before when consultants secretary called to say results not in . Went anyway to get the wound checked but its not fair building yourself up for results .
Hope you get your appointment soon . 
Thanku. Thing is Id got my sin to come with me as I know from past experience tou dint a sirb information normally. Then just told this dowwn the phone unexpectedly and she had to repeat it because I didnt understand it. Then she said " Got it mow?!!" in great haste to move on. I hadnt entirely tbh and difnt get a chance to ask when and which department. And what was inconclusive?
Now Im on phone trying to find out…lol Theyve had a big system change iver & am afraid I dont trust being lost in the chaos.
Ino its awful. Hope you sort it out it all just adds to the anxiety at an already difficult time . X
Please excuse all my typos in previous responses!!
I managed to get hold of a lovely breast care nurse who was at the mdt mtg where I was discussed. She said the can er markers came back negative but do fatty necrosis. The team fekt the biopsies may have missed part of the lump where can er might be. So going back in for ultrascan & more biopsies on 26th. She told me the team doesnt know what the lump is. Said it 3cms by touch, 2cms on mammogram and 1.5cms on ultrascan. They are being thorough re checking. Last time I had bc it was the second biopsy that found I was HER2 +; the first it was negative. Maybe theyre mindful of that too. My personal view is that maybe it would be best to just take it out!! Lol
Yet more typos. Apologies. Typing on a mob…
So finally 3 physical exams 2 mammograms 3 ultra scans & 6 biopsies later the MDT have finally decided that they were wrong it IS fat necrosis after all. Not BC!
The private consultation I had at the beginning to try to cut down the 5 week wait to be seen on the nhs 2 week wait fast track shows she was right 50/50 chance of either BC or fat necrosis. Ive hung onto those words & her supportive & kind consultation throughout the process
Its 61/2 weeks since GP referred me. I am exhausted from the stress and from dealing with varied temperaments/moods of staff at the breast clinic to the degree Ive felt traumatised by unprofessional behaviours. Im finally finished. I should feel elated and relieved but am so exhsusted by the whole process including taking phone calls from the team re results in shops with no warning…never knowing when they might cintact me or how or even when being tested how the staff might behave. Im just too exhausted to feel anything. Thats a terrible thing to say as I should be elated. I am very very lucky.
The fat necrosis causes pain but they dont treat it. I was told I may have it forever or it may go. Paracetomol and ibru are the long term treatments. If it gets bigger to get gp to refer me back. I wont though…its too unpleasant at the clinic. Last radiologist accused me of wanting a second opinion (not true!!) and her approach to me was vile. I was deeply shocked & told her it wasnt me but the MDT who had decided on a second lot of biopsies. I shouldve walked out but that would be shooting myself in the foot so I endured her anger as she took my samples and stomped out telling me I was wasting their time!!! I left in shock.
This is the first time Ive found a lump since my original diagnosis of bc 11yrs ago. Im definately not attention seeking!!
If I ever have the misfortune to find a lump again. I wont be going back there. I appreciate they are overwhelmed with referrals and cases…too many patients not enough staff or resources but there are no excuses for bad unprofessionsl behaviour. And this radiologist needed to vent but she shouldve simed it at the MDT eho ordered them not me.
I wish you all well and hope your nhs encounters are more professional than mine. And I wish those of you who are disgnosed with bc a sucessful outcome with staff who can despite enormous pressure remain professionsl and kind.
Thankyou for the kind words expressed on here. They kept me going.
Take care.