Hi all. Loving reading all your stories good and bad. I am looking for someone to calm me down to a frenzy. I had a
Mammogram on 21/12/24 which showed something unusual which the scanner said looked like cancer, so had 8 biopsies there and then. Fast forward two weeks to 3/1/25 and a meeting with the surgeon who confirms HER2+ve in my milk ducts. MRI on 6/1/25 with result today show something in other breast and now need to have a CT on 10/1/25, with Oncologist on 16/1/25 and chemo starting the following week. From finding the cancer to starting chemo will be 1 month which seems incredibly fast which, on one hand, is amazing but Iâm getting paranoid that they are moving fast because itâs growing/spreading. Is this normal?
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Hi, sorry you find yourself here (but welcome to the chat!). When youâre HER2 positive they tend to just get to it and start chemo as soon as the scans etc are all done as they know we tend to need chemo first (and depending on area you live). Once theyâve done the scans theyâll discuss the results at their team meeting and agree on your plan of action (chemo regime). With the oncologist youâll also be told the details and sign consent forms etc, and I had an introductory session at the chemo unit too where they give you info etc. My area is also very fast and I was a month from finding to starting chemo tooâŠ. There was nothing additional of concern, theyâre just efficient with starting the chemo 
I also had scans about 3 weeks apart by the time I had my CT before starting and there was no difference whatsoever in tumour size, and I was assured they didnât expect there to be any change in such a short time too. Please donât worry about quick timescales - it is normal and they have targets to try and meet too for their turnaround times/starting treatment
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Thank you @belle1. You have really settled me. Was worried after my call today saying there the some spots of interest on the other breast and needed a CT was code for âitâs spread and we need to act quicklyâ. Whilst worried I am looking forward to starting to get âbetterâ even if 6 months of chemo doesnât sound very inviting 
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No problem- itâs all a bit of a whirlwind at this stage! I didnât have any additional spots of interest but still got a CT as well as itâs routine in my area to be this thorough. The spots could also be nothing (as areas can sometimes flag up in MRIs and need double checking), but itâs their duty to ensure theyâve fully checked things before they start. The way I looked at it was that it was better to get all the info/more in depth scans as soon as possible so we could start tackling whatever the scans showed
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Hi @fimac1 Iâm sorry to hear of your diagnosis but you canât join a more friendly group of HER2+ buddies.
I had two primary tumours, one in each boob, grade 2 20mm ER+ HER2+ and grade 1 0.9mm ER+. It took a while to get the full diagnosis, I found my larger lump but an MRI to size that found the 2nd tumour. I had a bilateral lumpectomy, lymph node biopsy which was clear. I had my surgery 1 week after my final results, then did chemo/ Herceptin 2 months later. Radiotherapy after, followed by Letrozole (Iâm 55) and Zoledronic acid which helps with the bones but new research suggest it helps prevent with cancer in the bones.
I didnât have a CT but it looks like your team are trying to check everything. It may be that my lymph nodes appear clear on the ultrasound. Although different trusts seem to do different tests and treatment plans. All the tests will give your team all the information for your treatment.
I donât think they are wanting to start treatment any quicker than anyone else. They just want what is best for you. For many of us itâs hard to get our head around the diagnosis and many, like me, just put your head down and get on with the treatment. It wasnât until most of it had finished that I realised what I had been through and what my diagnosis meant.
You can call the BCN nurses for a chat on 0808 800 6000 between 9-4 M-F and 9-1 Sat, MacMillan have a helpline 7 days a week from 8am-8pm https://www.macmillan.org.uk/ There is also the Samaritans to talk through any worries on 116 123 24/7
Let us know how you get on. 
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Thank you @belle1 and @naughty_boob
Mine was found by accident. I had what looked like a crease in my breast from armpit to nipple and no ânormalâ bc signs. Mammogram was borderline so had an ultrasound and found 2 lumps in breast and one in lymph nodes. I am only 49 so not old for being called in for mammogram and breasts are too large to feel any lumps. I really am a lucky girl. As I said wait to get started on 6 months chemo then removal followed by radio. Obviously this may change after both scans but that was the early indication from the surgeon.
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Amazing news 
xxx
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Hi @fimac1 - I also started treatment quite quickly following diagnosis. I found a lump in April 2024. I attended the breast clinic for assessment on 14th May and they took biopsies of breast and lymph nodes. I received confirmation that it was cancer on 29th May. I then had CT scan, further biopsies, 2 MRI scans, echo, oncologist appointment, picc line fitted and started chemo on 25th June. I looked at it as a positive - as soon as it had been confirmed that I had cancer, I wanted to start treatment asap. I have also heard of people on the other end of the spectrum where they wait months to start. Iâd defo rather be moving onto treatment quickly. I know itâs easier said than done (and I need to heed my own advice here), but try not to read too much into it.
Wishing you all the best for your treatment - lean on this group of ladies when you need to because they are amazing xxx
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Hi everyone and best wishes to you all for 2025!
Im hoping to catch up on the forum but there has been a lot going on.
My treatment has been a huge battle and very difficult and there have been many unnecessary delays that have affected me, as a result I suffered a mental health crisis and I went to A&E during Xmas week and then the same week I was admitted to hospital by ambulance with an infection.
It has been a rough ride and I am due to have radiotherapy tomorrow afternoon but very unsure at the moment.
I feel scared and unprepared, my skin is still red and veiny from the mastectomy that the surgeon just casually remarked was permanent and I have horrendous scars.
I am very worried about any further changes to my body from the radiotherapy.
I have been rubbing cream and massaging my breast where the redness remains and there does seem to be some improvement on the vascular looking area, it appears faded.
I asked today could I start my radiotherapy on Monday when I feel a little better as I am still recovering from my infection and on antibiotics and just had my Phesgo today too and I also wanted to see if the vascular area would see some further improvement after a couple more days.
However the nurse said if I did not have it this week I would be referred back to the consultant for review to see if it was clinically beneficial to have the radiotherapy due to the delays!
I am very upset again and donât know what to do.I am worried about having the radiotherapy on my vascular area and if it would be detrimental or freeze in time the current appearance.
Can you advise at all please?
Any thoughts welcome.
Chaka Khaan Xx
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Hi @fimac1 yes as others have said the timeframe is quite normal. This is what is supposef to happen. I know its a whirlwind of appointments at this time. I had a month in between diagnosis confirmation and starting chemo. I didnt have a CT as the policy in my trust is only if there is lymph node involvement and mine were clear. I had complete pathological response from chemo.
I had a therapeutic mammoplasty on affected side witg contralateral reduction, this meant they could take plenty of tissue and reform the breast so did not have a dent or significantly smaller breast on one side. My conultant was confident that this would give me a good outcome, without having to have mastectomy. Iâm sure she would have done mastectomy if i had requested it, but i was happy to go with her recommendation as i trusted her experience and skills as a surgeon. up
@chakakhan iâm so sorry you have had a tough time, especially at this time of year. How long have you waited so far after surgery? I had two months from surgery to starting radio, which i thought was a long time, but nobody seemed concerned. It seems odd that a nurse should deny you a delay of a few days. Keep applying moisturiser. I wonder what the radiogrphers will say when you present yourself for treatment. I was recommended Flamigel RT by someone on this forum and that really helped with any redness and itchiness from radiotherapy. Good luck and keep us posted.
I then had a therapeut
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Sorry about the typos and extraneous words, its late!
Penny
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Hi Pennyp,
I have waited 4 months from surgery.I think 2 months is more usual depending on your surgery healing and planning of radiotherapy with the NHS at least not sure about private.
I agree it doesnât seem right when you are being given information from the nurse about retracting treatment, itâs like being railroaded into it.I said it almost felt like blackmail!.
Surely I should be able to have a conversation to discuss it further and an opportunity to have my concerns answered by my consultants and be fully recovered.
Funny I have just put Flamigel on!âŠthanks for the advice not sure what Im doing and if you apply it before treatment or not tho.
Anyway thanks for your message,I will let you know what happens tomorrow.
Xx
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Hello any insights advice or tips about radiotherapy please.
I have my appointment today but I am unsure about going ahead.
Im so scared and wavering.
What was your experience?
Any side effects reactions?
Thank you,
Chakakhan Xx
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If they suggested radio i would take it! Throw everything at it to stop C coming back. You got through chemo and you can do this! My operation was a lot easier than chemo with its gruelling side effects. I think chemo is defo the hardest part through this battle.
I also have an appointment today with my surgeon a follow up, they said i will need radio at start but not heard anything yet so i going to mention it today.
And for anyone else who is reading this and had a PCR did they change phesgo to Herceptin? They said to me it would be Herceptin now 
x
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Thanks Jeml,
Funny enough the chemo was the easy bit for me as I got into a rhythm and knew what to expect.The pre surgery was difficult and stressful but the recovery was manageableâŠbut the radiotherapy is causing the most stress and anxiety for me!
I had PCR but continuing on PHESGO.I wonder why they change it to Herceptin for some?
Good luck with your appointment today.
Thanks for your message Xx
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Really? Thats strange, i will mention that today, thanks for sharing. Wonder why i need just herceptin 
I did not have any complications with chemo either i pretty much sailed through it but still i think its got to be the worse in this all with side effects.
Im sure your nurse will put you at ease 
and some others on this forumn. Obviously i not had any either so no experience, i just been told by a friend to get some decent cream for the dry skin.
If they offer me it i will take it, i just think i got this far now so i might as well throw something else at it.
Im also starting something else soon a infusion to help stop it coming back and its for the bones too, downside of it i have to surpress my ovaries so i will be in menopause at 33 
x
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Hi @chakakhan Iâm so sorry you have been having such a rough time.
It might be worth a call to the BCN nurses on 0808 800 6000 9-4 to chat it through. Although you may already be at the hospital now. It is confusing that a few more days delay could trigger it going back to the consultant, I could understand if it was weeks.
If it was me I would be like you asking to have a few more days to get over the Phesgo and the infection but wouldnât want to miss the radiotherapy either. I hope you get some answers soon.
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RT ladies, get yourself a tube of flamigel. I used it religiously 2x a days during RT and 3x a day for a couple of weeks afterwards and my skin only got a little darker/pinkish towards the end of my RT. Now, a few months later itâs back to normal.
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Hello buddies and welcome to @fimac1 - As some of the others have said, weâre sorry youâve had to join us but really happy youâve found us. Nobody should have to mentally weather this storm alone. What a horrible Christmas present that must have been. I must say, itâs brilliant that your health authority are moving so fast. These are the standard tests and scans, and although they are terrifying and you have been plunged headlong into a nightmare, this is normal. Scanxiety is very real. We have all managed to convince ourselves that it is spreading out of control but one of my fave bits of advice is that HER2+ cancer falls fast to chemo and we have the wonder drug, Herceptin. Theyâve got you, weâve got you and you are on the pathway. Not only that, you are zipping down it. Iâve known some women wait for months to get to that point and come to the realisation that it is a postcode lottery.
Iâm really glad @belle1, @rrey and our @pennyp have been able to reassure you. I was told at Marsden that they like to get straight on with chemo for HER2+ cancer too. Although itâs a horrible shock at the time, I am now coming out the other side and feel very lucky that it got found and was considered curable. And that I got all this amazing treatment. Of course you wonât feel remotely lucky just now but from where I am now, I think of all the people walking around without any idea of whatâs going on inside them. After getting through those frightening scans, at least we know exactly the state of our insides. I see it as a thorough MOT at 53. 54 now, and boy Iâve never been so glad to attain another year!
@naughty_boob has given you the number for the BCN nurses, I see, who are amazing. So they are there for you if you need some medical advice over the phone while we are here for the emotional support.
Hello @chakakhan - Sorry to hear that youâve been having such a tough time of it. I really do think that you will find radiotherapy a breeze after what you have been through. Absolutely whack on that amazing Flamigel RT. My radiotherapy oncologist was hugely impressed at the results we had after using it. Her words were âThatâs as good as it possibly could beâ and I got the tiniest area of pinkness but that was it. Many women report great results with it so I say go for it. I agree with @jeml that you should throw everything you can at it. Youâve done the worst. You can do it ChakaKhan!!
@jeml Not sure why you are doing Herceptin instead of Phesgo. Iâm on the Phesgo. Does anyone else know? Bet youâre still buzzing. 
And rightly so.
I went to see Wicked at the Apollo Victoria last night ahead of teaching it for Musical Theatre class this term. I must say that I think it works better as a stage show than a film but Iâm being picky. It was magnificent and I was on such a high that I could NOT get to sleep last night. Iâm falling asleep at my desk today and feeling ratty about being asked questions such as âDo you know where the manual for the air conditioning is?â I refrained from shouting âNO! NO! IT HAS NOTHING TO DO WITH ME! WHY WOULD I KNOW THAT?â But I was thinking it in my head! 
Itâs an early night for me tonight.
Salbert
xx
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Please make sure you check yourself every 2/3 weeks. Thatâs how I found my cancer this time having had it before (in my axilla). Xxx
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