Possible inflammatory breast cancer - clinic app not for over two weeks

[Rockschooldropout]

I posted on Monday about this in another section but now I’m really stressing .
I went to the gp on Monday as my left breast swelled up almost overnight and became very tender to the touch , especially around the nipple area . The areola looks bigger and a little red . She said she thought she could feel a lump in the areola too and immediately referred me to the breast clinic. I called today but with my hospital the clinic don’t deal with appointments and you have to ring a central booking line .
The booking line gave me an appointment which isn’t until 23rd July . I asked about cancellations and they said they don’t have a cancel list as they are just the booking line
Rang clinic again who said nothing they can do as they don’t deal with that side of things .
I went back to my gp today to ask if maybe anti biotics in the meantime would help and she said it was unlikely as she believes I have inflammatory Breast cancer - I’m now beside myself with worry as I believe it’s very aggressive and can spread quickly .. and I don’t know what to do .
I could go private but so can’t afford the biopsy which she said I’ll likely need .
it will be 16 days from referal by the time I’m seen and I’m worried it’s too long 😩

@Rockschooldropout, I read your thread and really feel for you. My Mum had IBC so I understand the terror. I had to go to the breast clinic today for a nipple problem and I was given an appointment within days. The staff were absolutely so lovely, you need to be seen sooner.

If I were you I would turn up at 8.30 at the breast clinic tomorrow and explain the situation. Be very polite and let them see the distress you are in. I would say that you are terrified and have explored every option to be seen, you can't sleep and please will they let you wait to see if there is a short notice cancellation or someone doesn't turn up. Be prepared with snack and drinks and a book or something else. I work in the NHS and we would let you do this and not turn you away. If you have to do the same the next day then do it. The clinicians are there to help and I'm pretty sure someone will put themselves out to help a very scared woman.

I’ve spoken direct to the clinic and asked if I could be out on cancel list but they said they don’t handle appointments.. it’s all done by the booking line who have already told me they don’t have a cancellation list . The clinic told me they are stretched as one consultant is off this week , she told me turning up would result in being turned away as they cannot see anyone without an appointment and can’t make appointments there 😩she actually told me they are actually booking up to6 weeks ahead and that I have the quickest appointment they can offer .
Im so sorry to hear about your mum , that must feel frightening to then develop symptoms yourself x

@aodirjjd that’s so frustrating to be given different answers all the time 😩

I know I’m jumping ahead .. I guess it’s because my gp looked so grave and said it’s unlikely to be a cyst and that she believes it’s I BC
I had an armpit lump ten years ago and the gp said oh it’s probably a cyst but let’s refer you anyway .
This gp didn’t even say oh most lumps aren’t cancer .. etc etc .. there was no reassurance

Honestly op at this point I’d unwatch this thread until after your appt and come back after it’s done. I did that when I wasn’t quite sure on going private vs waiting and it was actually the best thing for reducing my anxiety. Otherwise you’ll get pages of people tells n you to ring up and harass the clinic /try another clinic which will just increase your sense of urgency and anxiety. Turning up and looking upset or calling receptionists isn’t going to help anyone least of all you.

At end of day you’ve got an appt within 16 days and it’s only a week to go now. There’s no cancellation list and no magic trick to get you in a couple of days earlier. Your gp might be grave but that doesn’t mean they know for sure they are just making sure you turn up and don’t shrug it off! Inflammatory breast cancer is one of the rarest breast cancers and googling all these statistics and scaring yourself is not helpful and not making the appt come any quicker.

you could have easily not found the lump /only got a referral after trying antibiotics and wouldn’t have thought much of that extra week. Delaying treatment by months would be a bad idea but 8 days is NOT going to change your treatment plan or outcome even IF you have cancer. And it’s a massive if still!

@aodirjjd Thank you ! I needed to hear this !
I’ve done everything I can .. I tried to get a cancellation , tried private and it’s all failed . All I can do is wait .. as of tomorrow it’s only a week away . Just a very long week .
I keep beating myself up for missing my screening appointment nine months ago and for not paying more attention to my boobs .. but the truth is I can’t change what’s happening now .. Let’s hope my gp is just an eternal pessimist who thinks the worst.. or as you say .. wanted to make sure I take it seriously
it’s agony waiting but no I won’t be turning up at 8.30 to any clinics .. not least because I have to go to work 🙈

If it's grown so quickly then it probably wouldn't have been picked up 9 months ago. Don't beat yourself up. You are absolutely doing your best. Sending you my love and a huge virtual hug!

Thank you OP ☺️I'm really rooting for you, keep us updated x

The waiting is the hardest part. My GP made all the right reassuring noises to me but still had to put words like "probably cancer" on the referral to get it onto the right pathway.

6/7 lumps seen in clinic aren't cancer.

Mine was a 1/7 that was. I've done all the treatment, had the surgery, healed well and am back at work.

Staring down the barrel of it is terrifying but looking back on it is a bit surreal. You wonder how you'll cope and then you wonder how you coped.

If it is cancer, the wheels will start to turn faster and if your local NHS hospital is anything like mine, you'll be looked after very well.

@TheYoungestSibling sorry you r been through this , I’m glad you are healing well though and finished treatment .. Im not surprised it feels surreal now …. But I hope it becomes a more distant memory at some point .
I must admit as I edge towards Tuesday I’m feeling more sick with worry . I’m reduced to wearing bralettes as I can’t squeeze my swollen boob into my bra and it’s been incredibly painful today . I’m so prepared for a cancer diagnosis that I’ll probably be more in shock if it isn’t !
I know they have to say suspected
cancer to speed it up , but there were no reassurances from her and that didn’t help . I know they’ll be honest on Tuesday and tell me if it looks like cancer , annoyingly as we had so many things planned for this summer hols with youngest dc 😩

Hey there, is your appointment today? Just to let you know I'm thinking about you. Hope you finally get some answers and a plan 💐 xx

Thinking of you today OP

Sending you the very best of wishes 💐

Good luck. I am a Stage 3 IBC survivor (five years now). If it is bad news ffs don’t Google as treatment has come a long way and although yes, it is very aggressive, it is treatable. There is also an internationally accepted protocol for treatment. If relevant and you want me to I can share my experience but hopefully I won’t need to.

Thank you so much xx it’s not until 5.10 pm 🙈

@Babbahabba @HappierTimesAhead thank you both - I’m literally bricking it !

Thank you - It’s good to hear success stories instead of the doom and gloom I’d googled ! DH has banned me from Google and breast cancer now strongly advise against it as a lot of the info is out of date .
In the nicest way , I’m hoping I don’t have to pm you .. but I’ll be in touch if if I get that diagnosis x

All my thoughts are with you for this afternoon’s appointment.

Thinking of you, op.

UPDATE : unfortunately it’s most likely cancer 😔
I was a in three hours , I had a mammogram , then a 4d one , then they brought the consultant radiographer in for my ultrasound which felt ominous and she said straight off .. I had two abnormal areas in my breast , there were no lumps but the two areas were heavily calcified which is suspicious of cancer . She did two punch biopsies , one fine needle one and also my lymph node under my arm . Jesus I’m sore now !
I don’t want to worry the dcs so pretended I was at work this evening .
I was then taken in to see the breast surgeon who said “ I believe we are looking at cancer “ and started talking about surgery and reconstructions .
Then I had an hour with the breast nurse .
I can’t fault how kind and lovely everyone was .
Results appointment in two weeks but the breast surgeon said to expect this to be an appointment to discuss treatment , she said it is highly suspicious if cancer they just need to know what they are dealing with

Very sorry to hear this OP, I’ve been following your thread and was thinking of you today and hoping for a more positive outcome, gutted for you, on a more positive note at least now things will move very swiftly and it sounds like you have an excellent team in your corner, I hope you have the same support at home as well

Oh, I'm so sorry it really does seem to be cancer, OP. I think we were all hoping for a false alarm.
It does sound like they have it well in hand. From everything I hear, once the NHS have a diagnosis they don't mess about, and you will be taken care of quickly and effectively.
Sending every wish for a tolerable treatment process and a good outcome at the end of it.
xxx

Oh I'm so sorry OP. I was really hoping it was something other than cancer. Please continue to share your updates with us if it helps. Hoping for a positive outcome for you x

I'm really sorry too that you had this outcome today. It can be quite a shock to be told you have cancer. I was diagnosed 6 years ago. The NHS really looked after me. It becomes slightly easier when you have a plan. Waiting is the worst!

@BigWillyLittleTodger I was hoping too it was just going to be a huge cyst , sadly not .

@ShrubRose Yes I don’t think they’ll delay starting treatment which is good but equally terrifying !

@Babbahabba I just knew all along really , I sensed it was more serious and then when other women were being scanned by the usual radiographers bug they got the consultant in for mine , shit got real ! I think it’s usually a giveaway too when there are two nurses and a breast care nurse in with the surgeon when you go in

@marmiteloversunite yes it felt odd .. you never really think it will happen to you do you ? I hope you are now all clear ?

I am so sorry to hear that but when you said “talking about surgeries and reconstructions” I thought woah, stop. You need to know exactly what you are dealing with as the gold standard of IBC treatment is chemo to shrink the tumor(s) as much as possible, then mastectomy within four weeks of chemo finishing - reconstruction is not considered until at least 12 months after surgery as the next stage is radiation. I am in Australia and spent literally hours will all three of my oncologists (surgical, medical and radiation) discussing treatment options. All of them had worked at some point at either Dana Farber or MD Anderson in the US, both specialists in the area of IBC as it is so rare that most places have too few patients to do trials on. Obviously if it is a different type of cancer your treatment plan would be totally different but the wait time for your appointment had already concerned me - I got a diagnosis within three days of going to my GP (I was a hospital in-patient that night) and started Chemo five days later - so if it is IBC you need to not be fobbed off with treatment that is not IBC specific. Good luck, keep us posted.