Really long wait for Red Flag referral

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My injection was done during my op so I have absolutely no idea how it went. There has been no pain in that area or anything though. Just a blue patch.

I was checked in at 7.30am, operation about 10.30am and home about 4.30pm. I had a delay though because I didnt wake up very quick, the surgery was short staffed, they forgot to take me off my drip and then they messed up my pain medication. They had planned on getting me out by 3pm. Things are rarely simple with me :heart:

I’m so sorry you got upset :frowning: Stay strong and just think in no time at all now you will potentially be cancer free!!!

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@enia1703 we seem to have taken over your post a little bit haha. How are you all holding up? :heart:

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Hi @foxgem I have been loving reading through, I’ve not been in a great headspace the past day or two but seeing you all getting on with things and being positive really has helped. I’m being transferred to my local hospital, had my clinic in a different one as I was so keen to get seen. I’ve been discussed at the clinic MDT last week and transferred now they’ll be discussing me Monday so hopefully I hear next week.

I told my family and they have been such amazing support, especially with my daughter who is 7 (she definitely won’t be finding out before Christmas), but I feel mentally and emotionally exhausted now more people know and want to check in and offer support, it’s went from being a little secret with my husband to being a big worry for all my family which is hard. It’s making me nervous to share with friends and wider when I have all of the information.

Sorry I’ve not been on as much, I have been thinking of you all and it feels so lovely knowing that you’re all here, even if it is a shitty situation for us to be in together :heart:

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Yes I’m in Scotland @anxiouslyawaiting My MRI isn’t until 18 January but I’ve started Letrozole now so hopefully everything will start to feel more positive soon! I’m finding the rollercoaster emotions the worst bit to be honest and my husband certainly is! Normally I’m very much a middle of the road even- keeled sort of person, so it’s really strange and quite exhausting to be lurching from positive to despair and back again so often!

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Hi everyone! How is everyone doing? Hope the anxiety has started to ease @anxiouslyawaiting and @al1kat and that plans are feeling manageable!

@foxgem how has recovery from your surgery been?

I found out yesterday I will be starting chemo on 15 Jan. I’ve got grade 3, triple positive IDC and the pre surgery chemo is the best schedule to reduce size before any surgery. I’ve been referred for a wig as cold capping isn’t an option for this chemo regimen, apparently hair will be gone by Feb :see_no_evil_monkey: Is it weird that I’m still feeling much more positive and less anxious than I was just a few weeks ago before my clinic?

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Hi there

Glad you have a plan in place and you’re feeling a lot better about things!

This doesn’t sound weird at all and is, in fact, exactly how I felt once I was diagnosed. It’s not like I was happy with the news by any stretch, but the sense of control that came back with knowing and being able to do something felt almost like relief. I have another couple of weeks until I get the results from my WLE & SLNB, but have decided I’m not “waiting” for results this time. I’m just living my life in the space between the surgery and my next appointment and I’ll tackle anything else that needs to be done then.

Good luck for your treatment and Happy New Year x

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Good morning @enia1703

I hope you don’t mind me hopping on to your post. Read that your triple positive so wanted to tell you about the HER2+ thread in case you hadn’t found it. Ours is a long treatment path so the other threads may tail of sooner as the surgery, chemo etc will be finished within a year. The thread has been going for 2 years. I found it to be a really helpful read as you get to follow the stories of those before you who have got through it. Lots of support, humour, wisdom and sage advice. Salbert, who started the remains active on it. One of many inspirational women who give up their time to support others

I’m exactly a year ahead of you. I was diagnosed in Nov 2024 and commenced chemo mid Jan 2024. Didn’t cold cap as was told it was pointless with Docitaxol. Hair was essentially gone by week 3. The chemo wasn’t kind at times but wasn’t as bad as I’d imagined. I lived a day at a time. No pressure on myself having to cancel plans if I felt rubbish. I joined the monthly chemo thread which was useful as it felt we were all in it together. Awake at silly o‘clock due to steroids and sharing toilet humour. I had surgery in June. Didn’t need radiotherapy as I’d had mastectomies as I had ‘it’ in both :woman_facepalming:t2:, plus no lymph node involvement and a pathological complete response to chemo. I’m still on targeted therapy which I’ll complete in February. Also on hormone blockers and bisphosphonate infusions. The appointments which were thick and fast like the waves in a stormy sea are now further apart, like gentle ripple on the shore and the days are being filled with other things. The year I was told would be spent tackling ‘it’ has passed and I can now start looking forward.

Best wishes x

Here’s the link:-

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Good morning @enia1703 I’m so pleased you have your plan in place. Not weird at all that you feel better, every new detail I get I feel better. I think @mssteel is right it’s having some of the control back. When you know what you are fighting you can find the right weapon and you have yours in your hand now! That’s really positive.
I fear the journey for us newly diagnosed is longer than we can really comprehend. Even when I think back to my mums treatment it felt so quick. I had this conversation with her when I was diagnosed and she kept laughing saying, no there were so many weeks between that and that. I had a whole different experience on the side lines. Bur we know from the stories here that it is managable.
15th Jan feels like a really good start date and gives you plenty of time to get organised. Wigs and lots of beautiful hats and scarfs as this is a great time of year to be able to cover up a bit if you feel the need to. Maybe consider preping for how you might get your eyebrows on each day, I know thats high on my list as mine are quite dark. Get yourself a little diary to write down all your dates to remember etc. You’ll be so organised you will skip into there on your first day :slight_smile: I think the HER2 positive thread will have so much great information and tips for you. Real people, real suggestions :heart:

Recovery for surgery was a bit longer than I expected. When people said about 2 weeks to feel better I thought it would be quicker and people were just being cautious haha But it has been ok. I kept the wounds clean and dry for as long as possible. Rested lots and kept to my exercises. Slow and steady was exactly how it needed to be

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Hi I’ve just found a lump on right breast Christmas eve and got an appointment there on Monday with GP x I’ve just today got a text saying im red flagged and can be seen anywhere in the trust. Im from N Ireland and im ill with worry x everytime I think about it I cry x who do I phone to see how long waiting lists are and to get onto cancellation list please n ireland based

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Thank you so much @mrsjelly i really appreciate you commenting and I will definitely join the thread!

I wasn’t expecting treatment to be soo soon as I thought I needed to wait for scan results etc but the oncologist was really helpful and explained everything and now I’m excited to actually be taking some action against it!

Glad to hear you are doing well and that you found treatment manageable, I hope this is the year of rediscovering yourself? My hope for 2026 is for more good days than bad :crossed_fingers:t2:

Thanks x

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Glad you’re on the mend now and hope things go well with the rest of your treatment!

I’m thinking I’ll get to shopping for back up wigs and headscarves and I’ve been given some local recommendations for what I think will be my ‘primary’ wig! My daughter is very excited to help me pick styles and to help do my ‘hair’! :smiling_face_with_three_hearts:

I’ve got micro bladed eyebrows however they were not done for someone who was going to have no brows so have messaged about getting them topped up hopefully ahead of treatment starting! X

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Hi @pollyanna2, my heart goes out to you as I can imagine what you’re going through. The number for the regional booking line is 028 9055 0400, they are actually angels the most compassionate and helpful people ever.

It’s unfortunate that there’s such a wait in Northern Ireland and it caused me many sleepless nights. They have a high number of red flag referrals and book in date order what helped me was knowing what referral dates they were currently booking so I could estimate when it would be my turn. I phoned the Friday before they were due to book mine just incase I could squeeze in rather than another weekend waiting and they had just taken a cancellation for the Monday right before I called.

I had to travel for it but was more than happy and in the end waited 5 weeks from referral to clinic even though the original timeframe was 10 weeks. Really hope you can get seen as soon as possible and that you get good news! Please come on here and ask anything you like/vent or whatever else you need to do! X

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Thanku so so much x ill ring them on Monday and see what they say x im just heartbroken and the thought of waiting 10 weeks scares me x thanku again for the nu.ber xx hope all of your treatment goes well xx

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@enia1703 Lovely to hear from you, and glad that you’re feeling so much more positive. I’m also glad that your treatment is starting so soon( - and even before when you were originally told your first appointment would be!).

From the sounds of it yours is very similar to my boss’s wife who has just finished chemo and is going for surgery on 08 January. She found the first dose of chemo the worst but it got easier each time, although she was very tired at points in the cycle.

I know what you mean about it being easier once you have some certainty and a treatment plan. I’m feeling a bit in limbo here - the MRI to determine size and spread and whether I need more biopsies before I get a treatment plan isn’t until 18 January and the results appointment is 27 January. I’m trying really hard not to Google anything but it’s hard, particularly as my breasts is not quite comfortable at the moment. I don’t know if its imaginary, the cancer, the biopsy healing, the metal markers that they put in or the hormone blockers, but if it continues I’ll phone the BCN at the clinic.

It doesn’t help that we’re moving house on 30 January. It will be lovely eventually, but does mean upheaval now, and difficulties changing GP because the only practice in the new town is closed to all new patients so I’m going to have to go through the NHS registration services to be allocated somewhere and I’m of course worrying that there will be a gap in the middle where the system automatically deregisters me from my current practice but noone else has accepted me.

We’re also still trying to clear our mum’s house to get it on the market to pay her nursing home fees. She moved in August and there’s still so much stuff! (Last weekend we found her gas mask from WW2 ; yesterday we found a pot of anti gas ointment no 2 which must date from the same time. ) If it was just down to me I’d have removed the things we want to keep, called in the auctioneers for the saleable stuff and got them to do house clearance for the rest, but my sister was horrified at the idea of paying the clearance team a few hundred pounds for something we can do ourselves.

We must get it sold as soon as possible though - I keep waking up in the night worrying about it , alongside the worries about our move and the cancer, which always seems more scary at 4am. Does everyone else imagine that they can feel it growing? I presume that’s a pretty common thing.

Sorry - that was a huge download of my current life issues :rofl:. I hope everyone else is okay , particularly those like @anxiouslyawaiting and @foxgem who’ve had surgery in the last few weeks

@pollyanna2 welcome to the group noone wants to join. I have found the people on this site generally and on this thread in particular so helpful and supportive in getting through these horrible initial weeks. It really helps not to feel so alone, and to talk to others who understand exactly because they’ve been there too.

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Happy New Year @enia1703 @al1kat @foxgem and all pink ladies on here. So lovely to hear from you. @enia1703 you sound so pragmatic and positive about it all. And good that you are finally getting the speedy treatment you waited so long for. @al1kat I feel your pain with the waiting. I hope your MRI on the 18th comes round fast. At least packing to move will help.

Well mine has all been pretty speedy so far… mri, results clear, surgery.. but now am back to result waiting :grimacing::folded_hands:t3: My last minute cancellation Christmas surgery on the 23rd went well. had the nuclear medicine to show sentinol lymph nodes the day before also all the pre-op tests. On the day my husband was allowed to stay with me which I was so thankful for as The location wires procedure under (many :cry:) local anaesthetic needles wasn’t great. Then my surgery postponed to late in the day due to an emergency. But surgery went well. 4cm Lumpectomy and SNLB. I was in very little pain after. Have been doing all my exercises and have good mobility. We walked to our local pub on Xmas Eve to meet friends less than 24 hours after surgery. They made sure I had a table and I only sipped one prosecco but just to be in that lovely cosy environment after 2 days of hospitals was everything.

I removed my dressings after one week as instructed. Was nervous as no idea what I’d see but they have done a neat job I think. My surgery is called a “Bonelli” where they incise around the areola. I am now 11 days post surgery and expect a call soon from the hospital for my results appointment….

This makes my heart pound just thinking about it. I long for clear margins and lymph nodes but I just don’t know. My actual ILC is just 10mm and is ER high and HER2 Low. But I also had a larger area (3cm ish) of in situ cells (DCIS or LCIS some uncertainty on that) but I know they are high grade (big speedy buggers!) so am anxious over whether they got it all. From my understanding the pre cancerous ones can’t spread to Lymph Nodes. But the little invasive is Lobular and I know they can be sneaky and hide even on MRIs…

I will be in a right old anxious state at that results appointment. But we’re going away with friends just for 3 nights tomorrow (UK) so that will help my anxiety for the last few waiting days :folded_hands:t3: Sending love to everyone xx

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Have a lovely time away @anxiouslyawaiting - that sounds perfect to take your mind off the endless waiting. I’m so glad the procedures went well.

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My heart :heart: goes out to you too @pollyanna2 you’re at the worse stage.. the waiting is torture. Sending you a huge hug. Some good practical tips for NI from @enia1703 so I can only add…try to still go to any social events that pop up. My time for your situation was early Dec so a lot going on that I really had to force myself to do.. but each time I was glad I did and felt better for it. This group will really help too. Sending love xx

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Thank you. After cancelling 2 foreign hols I can’t tell you how grateful I am for Costa Weymouth! Also my Mum&Dad live on route and old as I am I still need those hugs from them! x

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Goodness that was a big download but I loved it. Not all your worries, I am sorry for all you have on your plate but it feels exactly what this place is for. We post our worries, because on top of cancer, life still happens!!! As much as we feel like we have stopped in time the rest of the world is still going! I come here daily now because it’s a place I feel at home. We might all be at different stages and have different cancers and treatment but we are in it together, atleast here in this little corner of the internet :heart: You do sound very busy @al1kat but in some ways maybe that’s a blessing?

I am 3 weeks and 2 days post surgery and feeling really good (when I don’t let myself think too hard :grimacing:) I’ve started the advanced exercises and as long as I go slow I have good movement. There’s a little bit of tightness but I’m sure that will ease up the more I do them.

I had the same surgery as you @anxiouslyawaiting The surgeon cut around my nipple. It literally looked like he took it off and stitched it back on again! Very clever. It took longer to heal than the armpit area, maybe because I kept putting plaster type bandages over it. It still looked to raw to me to leave open under a bra. But I upgraded to putting a sanitary towel infront of it and am now flying free in my bra again :rofl: It still looks quite pink around the cut, and there’s a tiny scab on part of it but its basically healed up.

The waiting game now. I dont have a follow up appointment so I’m going to call Monday and see if any results are back. I’m super nervous. Ive got “clear margins, no spread” on repeat in my head. Whilst also keeping in mind that not getting that perfect result isnt the end of the world. We are all well on our way still :heart:

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@foxgem ha ha yes sorry.. when I looked back I hadn’t realised what a long old msg I’d written! Also didn’t realise our surgeries were so close and similar. You have done well to wait so long and not call. I’m on day 11 and wondered whether to call.. they told me 1-2 weeks but I reckoned with Christmas it would be longer. Is your cancer lobular or ductual? Mine is lobular 1cm but a lot of In situ round it. Do so hope they got it all. Am so glad you’re healing so well. I still have the steri strips on.. am at the itchy stage! :woman_facepalming: xx