Thanks for sharing your thoughts, everyone is different and it is a personal choice as to how to handle these things. I decided to have chemotherapy as I wanted to give myself the best chance of preventing further spread. I had invasive lobular , Grade 2, which had not shown up on mammogram, hence I had 18/18 nodes which some degree of cancer cells. This makes me high risk so want to do all I can. No guarantees of course. I have not had too many side effects so far so have been lucky, had last round on Friday so just need to get over side effects and avoid germs for next few weeks. I have kept my mind and body as active as possible to help with my recovery. At 58 I want to be able to be in a position to enjoy my life although I accept that it will never be quite the same again. I am more likely to live in the moment rather than planning long term which I tended to do before.
I think I am unsettled because at the original results meeting in March they said I would need a mastectomy and then after an MDT on 3rd August the oncologist implied that it was my decision to have further bsurgery. Hopefully this will be clarified on Wednesday and the best option for me will be clear.
Best wishes for the future.
I have been reading posts in recent weeks and it almost feels like 'getting to know' people.
I have taken a pretty solitary path with my BC experience, but I am willing to write it out here, because it might help others, in some way.
Aged 62, beginning of March I find a lump in the upper outer quadrant of the right boob. That can't be right, I think, I'd spent the last 2 years getting my weight where I wanted it ( wasn't obese, but lost a stone slowly and steadily through lots of walking ), am vegetarian for some time and vegan as much as possible, generally healthy, no BC in the family . . . . so I keep quiet, and get an urgent appointment with my lovely GP who isn't happy about The Lump, and we quickly opt for the 'within 14 days' one stop shop. Within the week,there I am at 8.30 in the morning, thinking we'll just get this sorted then.
Now I have to explain a bit about me. I would always describe myself as a bit of a fatalist. I don't go looking for trouble ( hence never took up mammogram offer previously) and because I've always had good health, I was planning ( as if ) to depart this earth one day, in tact, and of something rather obtuse and quick !!!
So, first door is the consultant who does visual check and the touchy-feely check - he's not happy, and also comments on a lymph node involvement ( which I had thought I too could feel ). Then waiting for the mammogram. ( Gotta say, you wouldn't rush forward for a mammogram would you, flipping heck, never though it possible to squash so little so flat!! ). Back to seat. Summons again, further mammogram to check on something . . . .
So now we are moving down to the ultrasound room for needle biopsies of lump and lymph node. At this point, I am lying there thinking this is not how things were supposed to go, and maybe I'll just leave and go home . . . .
After all that pushing and pulling and biopsying, I wait. Four hours after arriving I find myself back in with the consultant for him to tell me that yes, a cancerous lump and cancer in the lymph node.
Down came the defences. Sob. 'My children ( all in 20's and 30's ) will be distraught!!' Sob.
I ended up feeling quite sorry for the consultant as I went from calm to sobs in a split second. Total shock.
So I leave with info and BCC ringbinder with info - thinking this just can't be right?? Me??
And so began the letters and phone calls and the strange world that I had absolutely no plans to enter or be part of . . . . no sooner had I got this news, and info came at me thick and fast ( which in essence is very good, but at the time, I was thinking, hey hang on, I've only just been told this, give me a chance. . . . .)
To curtail this epic - my results 12 days later clarified Grade 3, staging between 1 and 2 I think, invasive ductal 2.2cm, also in the lymph node. HER2 inconclusive, oestrogen very positive (8). CT scan and bone scan clear.
I refused chemo from the off. It's personal, I feel at my age I was prepared to take my chances, and I have a huge issue about chemo, but I take my hat off to all who embrace it and go there. My obvious attitude (described by the consultant as 'actively participating in decisions' ) meant that a whole question was deleted, but I knew they were kicking it around as a first port of call. Appointment with the oncologist, and the sheets of paper describing chemo treatment that came with that discussion, did nothing to change my mind.
So back to the consultant and surgeon, sign on the dotted line, and on May 10 I had WLE and axillary clearance ( 11 nodes removed, one showed positive, the rest clear ). I did not have good margins, I am not 'well endowed' and one marging was 0.5mm and the other description was 'present at anterior margin' as there was no further tissue to be taken.
Earlier this week, I completed the 20 days of radiotherapy. I have been taking Letrozole for about 6 - 7 weeks now. I have refused bisphosophonates because the radiotherapy consultant explained to me that it is implicated in 'jaw necrosis' - and at my age, with my dodgy teeth, well I just wasn't prepared to risk feeling better with stronger bones but toothless !! My bone scan said a bit low density.
I told the kids and husband about 2 or 3 weeks before the surgery. Never had anaesthetic before, totally terrified, but cannot fault this London hospital at any stage - so glad I said to my gp ' if it was you, where would you go? '
Some s/effects currently with the radiotherapy, but the treatment itself was a breeze, again lovely staff.
So I just thought I would write this as I am aware that I am a bit of an anomaly, in 'self-prescribing'. I will say that when I gave my final refusal for chemo, the specialist nurse had a chat with me - and I said I was aware that I was an 'oddball' but I truly did appreciate everything that was being done for me. She said 'not at all - if you changed your mind the door isn't closed to you - and currently 50% of the women I have seen have refused chemo '.
Some people will probably think I am a bit crazy, playing with my life in this way - but at this age, it truly was about quality of life for me, and my kids all understood and supported that. And I will have to take the consequences on the chin, and I understand that.
I don't really know if I've done right or wrong explaining about me - but if it helps just one person . . . .
Hugs all x
I really hope you get the information you need to make a decision. It sounds like you will be well prepared with questions. The areas of cancer cells they found on the right after the re-excision were also under my nipple and that’s why everything has to go in my case.
Good that they want to get on with the radiotherapy. I was initially going to have radiotherapy but that was before I was told I needed chemo. Now it’s not so certain so it seems to be dependent on what surgery I have next so yet another area where I’m rather confused! Maybe the reconstruction has something to do with. My surgeon went straight 8nto talking about the two reconstruction procedures at my last appointment so it felt like it was a bit of a done deal. It’s interesting you have already had an appointment mid the chemo. Might see if I can get mine brought forward. Every hospital seems to have different procedures!
I know of someone who did decide to have recon two years later so it’s always an option if you change your mind,
Wishing you all the best and hope it goes well on Wednesday.
Best Wiishes xxx
Thank you for sharing this information with me. I have an appointment with the breast surgeon on Wednesday and intend to ask many questions to clarify the situation. I know there wasca tight margin on the side of the tumour nearest my nipple but do not know how tight. They told me at the results meeting that they could not take more from here as it would have compromised the nipple and had always been told that a mascectomy would be needed if the TM was not clear. However I was later told that the path report said consider mascectomy but then the oncologist said that it was my decision to have the further surgery. I think this arose because I phoned to chase an appointment that I was advised that I would have halfway through my chemotherapy,as advised at the results meeting. Neither of the two surgeons involved with my surgery are there at the moment and I was told that the surgery would be discussed at the next MDT which was on 3rdAugust.
I need more info but rather hope that the choice is still more clearcut than it appears at the moment as it would be hard to decide myself. I know that reconstruction would not be done at the same time as they are keen to get on with radiotherapy asap due to lymph node involvement. Not sure whether I will have reconstruction in future as the thought of further surgery at the moment does not appeal but my views my change depending on what happens in the coming months.
I will let you know how I get on and hope all goes well for you.
i have Invasive Ductal Carcinoma in both breasts. I am also a Grade 2 Stage 3 on the right and the tumour was 5.2cm with micromets in just one sentinel node . On the right I had 2cm of IDC and 0.5cm of DCIS with no lymph involvement. I had a therapeutic mammoplasty on 10th May. Left hand fine but did not get a clear margin on the right. I was told that if I didn’t have clear margins from first op that I would need a mastectomy, However after my initial surgery my surgeon said she thought there was enough tissue to have another another try and I ended up having a re-excision on the 24th May. Sadly, rather than providing a clear margin, the reexcision found small areas of further cancer cells. I have no choice on the right now but to have a mastectomy after I finish my chemo sometime in November. I could in theory make the decision to keep the left breast but for me I am now wondering whether to have a double MX in the hope of minimising any chance of recurrence. It’s very hard having the decision handed to you isn’t it? I need to know what my MDT say when I hear back from them after my penultimate chemo cycle which is when I’ve been told I will next see my surgeon. What would your treatment plan be if you decide not to have a mastectomy? Hindsight is a wonderful thing as they say and personally I wish I’d gone for a mastectomy in the first place! I had complications following surgery which didn’t help and makes me nervous for the next one especially as I think I have decided I would I want an immediate reconstruction using tissue from my tummy. It’s a llonger and more complex uregry and recovery but, unlike implants, if it works I shouldn’t need any further surgery in the future which would be a huge relief.
When are you next due to hear back from the MDT? I find it useful to have an objective view from my MDT especially as so many people get to share their opinions. I really wanted to avoid chemo and one oncologist was willing for me to have the Oncotype test when I asked but I’d have had to pay for it as I’m not eligble om the NHS due to lymph node involvement (£4000 for just one tumour!) A couple of days later I heard back from the MDT team that the majority I should have chemo. I was told it would be a waste of money to do the test as if my results had come back showing even minimal benefit they would want me to have the chemo due to the size of tumours, bilateral diagnosis and micromets. . We joked that I could now spend the money on a fantastic holiday when the treatment is over - in fact I’ll probably do just that! I will take their collective view about surgery to lhe left side very seriously.
please keep me posted about how you are getting on.
I am trying to find out if others have had experience of the way forward after tight margins. I had therapeutic mammoplasty in March after a diagnosis of invasive lobular cancer with nodes involved, grade 2, stage 3. At my results meeting the surgeons said that I would need to have a mascectomy after chemo, which finishes this month. Since then I found that the path report said consider mascectomy and my oncologist seemed to imply that it was me that had decided to have further surgery. I have an appointment next week at which I will ask what the situation is, I obviously want to have the surgery if it is best for my future health.
Just wondered if others have had similar experiences and what options they were given and what they did.