Welcome to this thread crossbar, and please relax and don’t worry. Well done Leonie for reassuring you already, we’ve been comparing notes for a while. You may note that I went through all this before 11 years ago. Surgery is really no problem, are they testing your lymph nodes too? I had double lumpectomies and lymph node testing back in June. My surgery was late in the day, and unusually for me, I felt quite sick, so stayed overnight but was home by 8am the next morning. Make sure you do your exercises. Unfortunately I had to go back and have a mastectomy one side, but even that surgery was not too bad and I had the surgery at 11am, no sickness, and was home by 4pm.
I’ve had 11 good years since my original diagnosis, enjoyed welcoming 4 grandchildren into the world in that time. I intend to go on enjoying life to the full, I’ve just got 3 weeks of radiotherapy to go, and hopefully then I’m free again.
Easy to say I know, but please try to relax. I worried a lot more the first time round than I have this time, because I learned that it was not the end of the world. Best wishes for Friday 13th. X
I know it's frightening but honestly you will be absolutely fine. Anaesthetists are very reassuring and you just go to sleep and when you wake up it's all over and done with. You will have a euphoric sense of relief (could be the feel good drugs they put in the anaesthetic?). You stay in the ward for a couple of hours after so they know your vitals are ok before they discharge you after you eat and drink ok. The tuna sandwich they gave me was so dry it would have been a struggle for most people but as I hadn't eaten since night before and was last op of the day I demolished it and it will be the best cup of tea you have ever had after no drink from 6am. In and out in a day, it almost felt like an anti climax after all the build up to it. I only needed pain relief for 2 or 3 days after and felt well enough to be out of bed making lunch the next day. Crashed at teatime though but just listen to your body and only do what you can when you can. The most annoying thing was not being able to drive for two weeks till surgeon signed me off. Getting the wire guides put in in the morning (if you need that?) takes a while but ladies who do that are great and numb you up and put you at ease.
Friday 13th? Bet that made you smile..
Wishing you a speedy recovery and good results x
Love your sense of humour because l’m newly diagnosed with bilateral DCIS & am having lumpectomies on Fri 13th Sept. I’ve never been so afraid in my life
Good to hear the oncologist used common sense.....They would have had to make a really good argument to me to make me have it.....as you say, harmful effects can far outweigh the potential benefit. I was surprised to see how little the after surgery treatments actually affect the overall odds.
We can compare notes on Letrozole but so far just slightly increased my already present hot flushes and night sweats so I can cope.....start taking as soon as though.......it's meant to stop anything else nasty growing by starving it of oestrogen and all symptoms meant to settle down after a few weeks.
I too am becoming frustrated by delay in after care, been asking for physio for cording since last op and still not got appt 5 weeks on, 3 weeks for oncologist and only just been told 'hopefully' 5th Sept for radiology but no phone call to confirm yet. At least it means I will be 'unfried' for a wedding we have on 9th!I
I too hadn't heard of biophosphates......doesn't affect prognosis much but good to protect bones from osteoporosis caused by letrozole stripping it of oestrogen.
Off to scotland next week as kids on an activity break in lakes so we get some well deserved couples chill out time. Glad you enjoyed your break and got to swim....I am down to one swim suit that actually covers the node clearance scar so need to go shopping!
Take care and keep in touch.....a September radiotherapy thread has been started so hopefully we can add on there too......assuming we get appts!
Well my trip to the oncologist on Monday went much as expected. He did have a ‘discussion’ with me about chemotherapy and offered it to me as ‘standard’ treatment. But when I questioned it, it was basically along the lines of “we are offering something which will make you feel rotten, your hair will fall out, it will last 4 or 5 months, your immune system will be suppressed so you are open to any infections (think...4 grandchildren aged 5 to 8, always with snotty noses once school term starts in September)...and all this, with people with your particular cancer, 3 in 100 will have a better chance of not having a recurrence, but we cannot possibly tell if you will be one of those 300. And anyway, we will be keeping a careful eye on you for the next 10 years”. He almost seemed relieved when I declined the offer! So it’s radiotherapy, probably for 3 weeks, and he’s given me my first prescription of Letrazole (complete with warnings of menopausal symptoms, oh what joy!) I will be picking that up from the pharmacy shortly and then staring at it for a few days, plucking up the courage to start it. He also mentioned biophosphonates...I’d not heard of them before, so I had to research. He will send me for a dexa bone scan to check my bone density now.
After finding the NHS brilliant in a crisis, in terms of my speedy diagnosis and surgery etc, now that I am in the follow up stage, the frustrations have started. I should have a group physio therapy session approx 5 weeks after surgery, and I did have one given me for 5 weeks after my lumpectomies, but couldn’t go as I was in for further surgery. My BCN assured me she would refer me for another appointment about 5 weeks ago. Nothing heard so chased it up last week....she hadn’t done the referral, so they pushed it through last week. Nothing heard, so chased it up with BCN, who said I needed to chase it up with physio appointments. 30 minutes on the phone with “your call is important to us....you are number 1 in the queue”, only to be told no record of referral. She went and saw the physios, who eventually found it on their system, but nobody had done anything with it. Reckon it will take another week before they can raise an appointment for me. I asked if as it was a group session, could they not just add me to the next group? Oh no, the system doesn’t work like that, far too easy, common sense doesn’t come into it. Fortunately I feel that I have got pretty good movement back.
Also radiotherapy is supposed to start within the window of 6 to 12 weeks after surgery, and as this is to do with my left side lumpectomy which was on 21 June, should start 13 September latest. But Oncology told me they are fully booked for a month. They are hoping to fit me in with cancellation, so I just sit and wait for my phone to ring and cannot make too many plans for anything. How soon will you get your radiotherapy?
The predict tool gave me a 73% chance of being alive in 10 years without any further treatment at all, or 77% with radiotherapy and hormone therapy. That’s good enough for me! I did discover that my left side tumour was 26mm, not the 15mm they had measured from my scan. And the ‘tiny 8mm’ tumour on the right, was in fact 35mm!
Sorry this is so long, hope you haven’t given up reading it, but it is quite therapeutic to get it all down and share it with someone in similar position. The short break was great, and I did swim in the sea twice, and managed to change reasonably subtly behind a towel. I’ve since been on Amazon and ordered a large beach changing robe!
Have a great holiday. We took the kids to scotland after my last op and before results and it was great to get away from it all. Regarding the beach change.... I put my cossie on under my clothes in preparation for the beach......but that's probably due to the fact my mum always seemed to whip the towel away before I had quite finished or the wind flapped it open......so I have a deep mistrust of the under towel change 🙂
Yep they take everything into account with the Predict tool not just the breast cancer....but it's good to see in numbers that this thing doesn't have to rule the rest of your life whatever age you are 🙂
Fingers crossed for you for next week x
So pleased for you that you got on well at oncology and don’t need the chemo, that’s the type of result I am hoping for next Monday. The difference between us is that I am 66, so if they look at 10 year survival rates, I’m a bit further down the line to shuffling my mortal coil! Also I’m a 36DD!!
Today hubbie and I are off for a couple of days in a hotel by the seaside. And I am taking my newly acquired swimsuit and swimming prosthesis as I love to swim in the sea.....my only concern is how to get changed on the beach without startling people as I whip lut my ‘softie’ from my bra and heave on my swimsuit with one boob already in it! Mind you, the weather doesn’t look as though it is going to play ball! Will let you know how I get on Monday.
You have to laugh or you'd go mad....a thick skin is also handy......I have gone from someone whose boob s are only seen by myself or my other half to having to whip them out for an increasing number of strangers (all hopefully medically trained) and so many statements about my 'small breasts' (as if I hadn't noticed after 51 years) that it's a wonder they haven't shrivelled up from sheer embarrassment.
So much of this experience is random, luck/unlucky from diagnosis to treatment choices to outcomes......and definitely recurrences. It's bizarre that so many books on the subject include 'taking control' in their ethos as in essence you don't have much. I applaud you challenging the initial mastectomy choice. Trying the WLE first would if it were me (heard that phrase a few times) help in adjusting to the mastectomy because now you know it was necessary not a choice or 'standard' and you tried your best for the less invasive route. I hope you are continuing to adjust and heal as however you end up in this situation it can't be easy and is something we all contemplate once we know WLE and radiotherapy is in our treatment because as you say a recurrence will then routinely be dealt with with a mastectomy.
I was terrified going to the oncologist but they didn't recommend chemo as I am HER2 negative and only sentinel node affected out of 14 removed and small slow growing cancer....huge relief! Ten years of letrozole or tamoxifen (bloods taken to plot where I am in the menopause), radiotherapy (but at 3 weeks it's much more doable than chemo for 3 months) and adjuvant biophosphonates. I am also taking part in a trial for......aspirin! It appears to give advantage of reduced cancer occurrence so this trial is trying to prove it. Think I can handle that 🙂
The oncologist used the Predict tool to show me that my ten year prognosis was really good......and reassure me that they only spoke about 5 and 10 year survival rates because that's how long the studies last for (as that's the time down most recurrences occur) rather than that's how long we can expect to live! Glad I got that one cleared up 🙂
Whatatit seems to have gone quiet since starting radiotherapy looking at her threads......hope everything is going well for her and am sure she will comment when she logs in again.
Take care and let me know how you get on x
Good morning Leonie, I think you and I have a similar sense of humour, which keeps us going throughout all this! I was interested that you had a full lymph node clearance after the sentinel node came back positive. My consultant never suggested that, he took 2 nodes out, and although the sentinel node was positive, the second one was not. But I am expecting the radiotherapy to be extended into my armpit to cover that. And I know I will have to take the hormone tablets, probably letrozole. I was on tamoxifen 11 years ago but stopped them after a couple of years due to side effects (bleeding from a place which I thought I’d finished with!). My consultant at the time said I only had a very slim chance of a recurrence .... ha ha!
Your experience sounds similar to mine 11 years ago, in that I was originally diagnosed with dcis, but when they did the WLE, they found an invasive tumour. But my lymph nodes were clear that time.
As regards choices, I think they cover themselves by giving you ‘best’ advice - I was initially told that because I had a recurrence on the right side, that the ‘standard’ treatment was a mastectomy, but I had the choice on the new left side. I did some research and asked a few questions, and eventually my consultant was very happy to do a second lumpectomy on the right side. However, once again I drew the short straw, as the results came back with lobular cancer which had spread more into the tissue, so I had to go back for the mastectomy. But, I do not regret my initial choice - as the consultant said, if it had come back as the tiny 8mm tumour they were expecting, it would have been somewhat drastic.
What I’m still struggling to come to terms with is that I had my final mammogram on the 10 year follow up in 2017, and all was clear. In 2018 I had my letter to say that I was off the programme and back on to 3 yearly routine mammograms. It so happened that the mobile unit was in my town this year and I was called in......and all this has come about from that. So in 2 years I’ve gone from ‘all clear’ to a mastectomy and a new cancer with lymph node involvement.
So the next ‘choice’ will be when we see our respective oncologists! I am quite happy to go along with the radiotherapy. But they will have to make out a very good case for chemotherapy for me to go along with that. I think it is purely because of the one lymph node involvement that it will even be discussed.
All the best to you....I hope ‘whatatit’ who initially started this thread is finding this helpful?
I managed to send you a hug!
Will be interesting to compare oncology notes as although 'everyone is different' we are both down to left side with one node positive so some definite commonality.
My sister in law is just post surgery/chemo/rads (it was her diagnosis which made me get mine checked as wasn't due for first mammogram till Sept this year) and there have been distinct differences in time between diagnosis and treatments (I have waited soooo much longer) and the treatments themselves for seemingly the same thing e.g. They did her lymph clearance with radiotherapy but mine with surgery and when we questioned it my medical team said it was 'recommended' way as it better informed my treatment plan and there can be sleeper nodes that could have cancer in them but radiotherapy only worked on active nodes. That freaked my sister in law out but when she asked her medical team they said radiotherapy was better because there was more risk of lymphedema from surgery and they both did same thing......that freaked me out! Mine also keep giving me choices which I am sure are meant to empower me but they are always 'would you like to be poked in the eye or kicked up the bum' kind of choices where your instinctual reply is ' neither really so can you just do what's medically best and ease the burden on me a bit?' I feel like I have tried to digest a medical degree in breast cancer in a bid to make as informed a choice as possible. I am due at the dentist soon and fully expect him to ask what size of drill I would like him to use to inflict the pain!
My sister in law on the other hand has never been given a choice about anything, just told she is getting 'everything we can throw at you'.
Good luck to us all 🙂
Thanks Leonie, I think I have sent you a hug! I’m new to this too, but I just clicked the little orange circle which says hug! It sounds as though your journey is at a similar stage to mine, let’s compare notes after our oncology visits!
Sorry to hear of your recurrence but glad you are healing well.
I invariably end up on here when I am waiting on results or appointments as it's good to read and now 'talk' to people who know how I feel and vice versa.
You have done this before and are obviously a strong individual who will do it again. Fingers crossed for both of us for good outcomes from oncologist meeting.
Take care x......I would send you a big but have only just started posting on here and have no idea how to do it!
Hi, yes I’m another one of the 3%! I initially had a small tumour in my right breast in 2008, dealt with by lumpectomy, lymph node testing (clear) and radiotherapy. This year, after my first routine mammogram after the 10 year program, I was called back in for my left breast only. But a very vigilant radiologist took biopsies from both breasts, and both came back positive. Long story, but I opted for a double lumpectomy as it was thought both tumours were very small, and in particular the recurrent side was so small, it couldn’t even be seen on a mammogram. I knew I could not have radiotherapy again on the right side. The new left side came back with clear margins, but with cancer cells in the sentinel node, but not the second node. But the right side came back as invasive lobular cancer which had spread into the tissue, and they did not get clear margins. However the lymph nodes were clear. So just over 2 weeks ago I had a mastectomy on the right side. I am pleased to say I have recovered extremely well fro the surgery and am getting active again. I am now waiting to see the oncologist in just over a week. I know I will have radiotherapy on the left side, and there may be a discussion about possible chemotherapy, because of the lymph node involvement. As I understand it, the right side will need no further treatment. Every case is different, so I can only pass on my experience. So best wishes to all those in the 3% band, we are very special!
No you are not alone in bilateral. We are apparently one of only 3% of women diagnosed who have it in both breasts....lucked straight in on those odds and yet that lottery win still eludes me!
I was given the very difficult choice of bilateral mastectomy with immediate implant reconstruction or bilateral wide local excision. I chose WLE as the mastectomy and possible issues and complications of implants wasn't something I felt I could do if I had another valid choice. They were both 15mm low grade DCIS so it was expected that surgery was all I would need but they couldn't promise as until it was out and under the microscope they couldn't be certain. My consultant always underlined it was a personal choice as medically the outcomes were the same and recurrences are in the hands of the gods and can still happen after a mastectomy or WLE.
WLEs went fine with clear margins and right breast needed no further treatment. Left breast however really surprised everyone by having area of invasive cancer and sentinel node biopsy came back positive. So 4 weeks later I had full node clearance on left side. I breezed through WLE but have had recurring seroma and cordng after clearance so a lot of pain still after 3 weeks.
I need radiotherapy and possibly chemotherapy but thankfully rest of nodes came back clear so I am obviously relieved at that. Meeting to discuss this and hormone drugs etc is next week but mastectomy wouldn't have saved me from any of this. My feelings are as numb as my armpit at times with the rollercoaster of changing diagnosis, treatments and horrendous decisions to make. But one breast or two affected.....forums like this show we are not alone in our battle, fears and ultimately overcoming this and coming out the other side. I wish you and everyone else going through this strength, support ......and a continuing sense of humour!