In case nobody has said it to you yet, welcome to the club that you never wanted to join but that has the best members. And they really are. Sorry to hear that you’ve had that horrid diagnosis but you are among friends who have been there and understand.
Mine was also supposed to be a small DCIS which turned out to be waaaaay bigger and with invasive HER2+ cancer which had made its way to 2 lymph nodes (the little bugger!)
Needless to say, the waiting game is absolutely the worst bit. Once you are on the treatment path you feel so much better as you know what you are dealing with. Dr Google is not your friend. Stay away from him! (Not sure why I made him a man but whatever…)
My mind went to crazy awful places and I spiralled down repeatedly and, now I can say it, unnecessarily. Well done on reminding yourself to stop. No point in having those doom-laden conversations with yourself or anyone else if you haven’t reached that point. Deal with facts and not speculation. I’m really sorry if I am giving you advice that you don’t need but I want to make sure you don’t do what I did and assume the worst.
I had my scans all done by the end of January and got the results of them through on 2nd February. I met my oncologist on 8th February. My situation is possibly different as I switched from NHS to private between 2nd and 8th February. However, I would say to just keep calling your team after they’ve had that MDT meeting. Be calm but pushy. Ask them when you can expect your scan results. I’ve learned through this time that you have to advocate for yourself.
In the meantime, (and we all know about scanxiety and how hideous it is) do everything you can to distract yourself. When I was at my very worst mentally, my GP friend told me that her sister had been diagnosed with Stage 4 breast cancer 10 years ago and had just been to Dubai to see her grandchildren. My breast cancer nurse at Marsden told me that these days the vast majority of breast cancers are curable. Hold onto these facts.
I have had a call from the oncologist secretary this morning and she has given me a telephone appointment for next Friday 2nd. I queried why it’s telephone and She informs me that the oncologist is not onsite until October.
I am absolutely thrown by this and wondering how on Earth this can be possible. Surely he will need to examine me?
The letter says I will receive a call from the consultant or a member of the clinician team. So I may not actually speak to the oncologist!
I suddenly feel overwhelmed with anxiety and the a feeling of being not that important!
Has anyone heard of telephone consultations since covid?
I am both an NHS consultant and a patient. I’m early on in my diagnosis and haven’t seen my oncologist yet. It’s not outside the scope of practice to have a telephone clinic… they don’t need to examine you and basically will have all your information at hand that the team have put together. The Surgeon does have to examine you but that’s at the beginning.
Based on all the information, the oncologist and their team have most likely already decided the chemo regime.
Still… i would like to see the oncologists face to face-- and this is the gold standard in my opinion. or at least on a video call.
I have no idea yet how my appointment will be!
But either way, it’s your prerogative to ask all the questions and received all the information you need. Write down the questions you need to ask. And you can certainly ask for a face to face appointment if necessary. It’s odd that the consultant is off-site until October but is still doing telephone clinics. i would also, if you are unhappy, maybe ask to be referred to an oncologist who IS on site. Your breast care nurse should be able to help you with this.
hope this helps. Bearing in mind i haven’t seen my own oncologist yet.
@lilly123 - if possible I would ask to change to a different oncologist. My first appointment with mine was face to face and lasted about 40 minutes. She did examine me and then went through the chemo regime in some detail. I’ve had one telephone consultation since but otherwise always seen her in person x
Thank you @luckylychee for your message is reassuring. It’s not the oncologist that administers the treatment I guess. It just feels less important having a phone consultation versus face to face.
I am worried as I was hoping the oncologist would examine me. I feel my lump has grown significantly.
I feel that once I have my treatment plan I will be happier.
@luckylychee welcome. I feel that we are very lucky to have someone on this forum who is not only an NHS consultant but who also is going through this. Much as I obviously wish you weren’t going through this. Thanks very much for giving us the benefit of your knowledge.
I didn’t get to see my oncologist until my consultant had decided on my course of action. That said, it was very quick and no sooner had I opted to use her, I met my oncologist. I agree with @ivy-cat that you can maybe ask for another oncologist if you are being left waiting around for so long. It’s the waiting that causes much of the anxiety.
We have just arrived in East Wittering. We are back down here again as we have an unexpected few nights away due to Marsden rearranging one of my appointments. We jumped on the opportunity and it’s all the sweeter for being unexpected.
We are a few minutes from the beach and the sun is shining. I appreciate this so much more than I would have done a year ago.
I’m sorry that you find yourself here, but we’ll get through it together. The forum is a very safe and supportive place.
I’m sorry your oncologist isn’t onsite until October, seems a bit odd. I had my diagnosis last May when masks were still mandated but it was mainly face to face. The oncologist examined me in clinic. The only time I had a telephone call was after our first meeting and to discuss extra test results. I needed an MRI to size the tumour to find another tumour in the other boob as well. Then the results of this were discussed over the phone. This consultant was a locum and went back to Spain by the time I started chemotherapy. I was swapped to another who I’ve never met. He was ill before and after my first chemo so met a lovely professor who covered his clinic. After that I met with a senior clinical nurse practitioner for the rest of my treatment. Since finishing radiotherapy I’ve had a couple of further phone calls to discuss my MUGA scan for my heart due to Herceptin.
Your breast surgeon, oncologist and others would have formed a multi disciplinary team to discuss your case. But if I was you I would like to meet face to face, so many times things are said or done and it pops into your brain to say something that doesn’t happen on the phone. Maybe you could enquire why they are not on site and that you would like to meet face to face, they may be able to swap consultant. The oncologist will work with a team with a consultant at the top and multiple junior doctors in training under them.
The breast nurses I have met always say they like to meet face to face as there are many body and facial expressions that can be picked up in clinic. Anxiety, feelings and relationships (if accompanied).
I noticed you mentioned the 62 days and they do try to start treatment within that time but many things can alter this. I found a lump in April and didn’t start my treatment until July. 3 months on because of the 2nd lump and subsequent biopsy tests. I was told most tumours grow much slower than we think and that to get it right first time is best, so waiting isn’t such a bad thing. It can be hard to hear because the waiting is the worst.
Remember you are important, when you have your call on the 2nd explain how you are feeling. You can also talk through your feeling with a BCN nurse Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small
It must be hard to be an NHS consultant and a patient when you know the medical side. Dr Liz O’Riordan always comments on the things she wished she knew while working as a breast surgeon. But having people like us that have been through it first hand is also important for your support.
I’m going to annoyingly say that most appointments have gone smoothly and timely, but had some bumps along the way.
Had biopsy 5/4/24, got results 11/4/24, where they told me my op would be 3/5/24 and likely radio only as despite being Her2 and ER positive only a Grade 1 . Had a magseed put in on 29/4 - that was more traumatic than I bargained for, Sonographer put seed in wrong place, told me because another lump found, so had to put another one in original lump and then proceeded to take 5 very painful biopsies of the new lump that were rushed through to lab so results back on new thing day before my op - so 3 day wait. She also queried the look of a lymph node to her consultant on USS which gave exta worry, but they brushed it off. Turns out the Sonographer was just incompetent, all negative biopsies and sentinel node negative. She’s thankfully not working for the trust anymore, I suspect there were too many complaints about her as she was truely awful in demeanor while getting things wrong, and also enjoyed giving pain too much - really a sinister experience, I felt like Dustin Hoffman in Marathon man ( when he gets tortured by Zell).
The wait from op to radio seemed long, was meant to be starting on 9/7/24 but started this week on Tuesday as 2 week delay over wound infection - which Dr Google says carries an increased risk of recurance, as does having Her2, but also had zero margines due to being up to the top end of breast tissue and up to skin anteriorly. I’m assuming other margines ok as not noted.
So 4 down of 19 fractions of radio done and I have not felt this good in 2 months. Nothing to do with radio, all to do with Tamoxifen I suspect. Its only since I got 2 days of head clarity, more happy zing and better sleep, that I realise how bad Ive felt the last couple of months, just a relief to not feel light-headed and woolly all the time. Still on tamoxifen, but I think its down to my ovaries giving me some estrogen- I’ll enjoy it while it lasts.
Its an up and down journey we all go on, plans can change, as can how you feel, which is why its good to talk. Will I feel this good by week 3 of radio, who knows?
@lilly123
Just wanted to add that oncologists can be attached and based at cancer treatment centres, so need to travel to other hospitals to do face to face, that could be why they are not on site until October. I’ve seen mine once, just to tell me about the radio, but as not had chemo, theres less input required from her end. She was very nice though and more detailed about my op results - disappointed that my surgeon missed some parts out about margines, even though I specifically asked him, which had a bearing on the amount of radio treatment. I also think its valuble info in regards to watching out for signs of local reoccurance.
Maybe say in the telephone discussion that you feel you need a face to face and offer up travelling to wherever they are based for it, if that is a possibility for you.
This is true! I’m based in London so am assuming that they are always there. But outside of the big cities, oncologists do travel between sites for their clinics.
Thank you for your welcome. Being a doctor of 28 yrs and treating countless numbers of patients with cancer including breast cancer doesn’t make it easier when you get the diagnosis yourself.
So many conflicting feelings — feeling like fool for having missed the lump, knowing exactly what lies ahead and what each investigation means is both comforting and dreadful at the same time
So yeah confusing. And the process and waiting is still very hard.
And surprisingly navigating the system is still frustrating even though I work in it!!!
Anyway I’ve finished my pet scan and I’m due to meet the oncologist next week. And then chemo . I know enough to know that I’ll be asking for a PICC line
Am also getting myself a ‘chemo outfit’ coz why not??
@luckylychee
It’s good to find a forum that has recent posts, you’ll find a lot on here are years old, and even decades if you go on McMillain. It’s understandable, people get busy with their own journey. @salbert
Thanks for keeping this thread alive. Its good to be able to find a responsive thread when you’re in the mood to chat, my dog is fed up of hearing me. Don’t have a partner to moan to, and would not be fair to weigh too heavily on my son.
Hi, the day before I started chemo I bought an expensive bottle of perfume and wore it the following day during chemotherapy. I normally wouldn’t spend that amount on myself but I thought sh.t I have cancer you can’t take it with you. However I now can’t cope with its fragrance, it makes me feel nauseous as it reminds me of chemo, so it’s back to wearing the cheap stuff
I know what you mean about smells and their association with chemo. I had read on a previous monthly chemo starters that it had happened to them. So I went to Aldi and bought a cheapo e from there and I now can’t stand the smell. It’s a bit like chemo clothes. I wore certain items for each chemo and now I associate them with chemo, so off to the charity shop.
just wanted to let you know that i met my oncologist this morning face to face. she was great BUT didn’t examine me so a lot of it could have been done over the phone. and she also said that most of our future appointments would be done over the phone. They would still dedicate the same amount of time to you even if it’s over the phone.
Of course, nothing beats face to face… but just to let you know, at this point, getting plugged in and starting treatment is the most important thing. i wish you well, and remember if you’re not happy-- advocate for yourself! the breast care nurse is your champion!
Hello . I’m new here, have just seen this thread and wanted to drop in. I was diagnosed with ER/PR negative, HER2 positive breast cancer in May this year. I’m 38 and have 2 young children, who are my entire world. I found a lump in April and the diagnosis came as a huge shock. Lymph node biopsy has also tested positive for cancer. I have had 2 sessions of EC chemo and am coming up to my third - I was due to have these every 2 weeks but my second round was delayed a week as my wbc and neutrophils were too low. I’m hoping this third round will go ahead on time but I’m not confident. I’m struggling massively with worries over the future and am desperately seeking out positive stories from people who have been through this and come out the other side. I am terrified of cancer reoccurrence and spread and just find myself becoming so overwhelmed with the thought.
I have been on a campsite with absolutely no signal which is wonderful in many ways but a little bit frustrating when you want to communicate! I am now on a beach and have been able to catch up with emails and messages. Yes, you did read that right. A beach in the UK. Wonders never cease!
@entropy It sounds like you are getting there and it’s great to hear how much better you’re feeling. That’s very useful information about oncologists travelling between sites.
As for keeping this thread going, I wouldn’t be without it. As HER2+ gals, we are in for the long haul and in that respect I’ve still got a long way to go. I’m getting in a few days break before my mastectomy next week. So I want my sisters alongside me. I was that newbie back in December, adrift, rudderless and drowning; I felt like all these wonderful women came charging towards me in lifeboats and hauled me in to port in a storm. And now I want to be that lighthouse for other women who find themselves adrift in that frankly terrifying sea.
@luckylychee it must feel strange to be on the other side of the fence after all these years and I can well believe that it must be both comforting and dreadful In equal measure. I guess there is no fear of the unknown for you then. Definitely go and buy yourself a chemo outfit!! With multicoloured sequins, if that’s what you want. I don’t know if you have read further up the thread but my friends bought me some Superdry clothing that I was instructed to burn at the end of chemo. I realised that there was no way I could bring myself to burn such expensive clobber! I am therefore wearing it all still and expect to be doing so for years to come. I never was good at chucking anything out!
@shade I did the same as you and bought myself a special perfume for chemo which smells lovely but is a knock off from Perfume Parlour that cost a fraction of the Jo Malone one that it is impersonating! I didn’t want to associate my beautiful Flowerbomb perfume with chemo. So I’m with @naughty_boob on that score. Cheap scent all the way! But you know what? Whatever gets you through. (That said, the amount of money I have spent on cake over the last eight months could possibly have purchased the entire perfume counter at Harrods.)
@rrey welcome to our big safety net and I hope you can feel our arms wrapping themselves around you right now. 38 years old and getting this diagnosis is not fair. But as we know, this horrid disease doesn’t discriminate. I want to say to you that we’ve all been where you are now, terrified and with our minds racing away with us. I don’t know how much of this thread you have read but there are many women who reassured me right at the start in December so you can read many stories of women who have come out the other side. Three women who regularly check in on me that are personal friends are 6 years, 7 years and 10 years post diagnosis and treatment. All still clear. I know a lady who is 10 years past her stage 4 diagnosis. She lives a full and active life. My doctor has a friend who shows no sign of disease after getting treatment for breast cancer that had spread to her brain. My breast cancer nurse at Marsden has told me herself that the vast majority of breast cancers are now curable. I like to tell myself that we are in a better position than all the people who are walking around not knowing what is going on inside of them. We are being treated and they will keep an eye on us. I’m so sorry to hear that you’ve had chemo delayed already but that is common and they can reduce the chemo dosage slightly whilst your body recovers. The statistics for us, even with lymph node involvement, are really excellent these days. @Kay0987 gave me some really good advice about how quickly our type of cancer falls with chemo and the wonder drug, Herceptin. Your fears are real and we all know and understand them but your chances are really excellent. So I would say you have come to the right place to express those fears. Tell us how you’re feeling and we will all continue to do the same and carry each other through.
Love to you all from Bracklesham Bay on a sunny day.
. I’m new here, have just seen this thread and wanted to drop in. I was diagnosed with ER/PR negative, HER2 positive breast cancer in May this year. I’m 38 and have 2 young children, who are my entire world. I found a lump in April and the diagnosis came as a huge shock. Lymph node biopsy has also tested positive for cancer. I have had 2 sessions of EC chemo and am coming up to my third - I was due to have these every 2 weeks but my second round was delayed a week as my wbc and neutrophils were too low. I’m hoping this third round will go ahead on time but I’m not confident. I’m struggling massively with worries over the future and am desperately seeking out positive stories from people who have been through this and come out the other side. I am terrified of cancer reoccurrence and spread and just find myself becoming so overwhelmed with the thought.