Hi Michelle
Me too was told Oestrogen was weakly positive however they have told me I still need to take hormonal therapy for 10 years / tamoxifen for 5 then amorotose inhibitor following 5 years
I’ve started taking the tablets
X
Having a bit of a wobble today ? Got my results back and not what I was expecting. Having been told initially that it was all/primarily DCIS, when I had a positive sentinel node (micrometastasis) it was suggested there might be a very small invasive component present. Turns out the invasive component is 4.5cm! Freaking out now! I thought I had this all under control and new what I was dealing with…
Still waiting for hormone and HER2 receptor status on the invasive component (DCIS was ER-). I also know I didn’t get clear margins from the mastectomy. Informed that chemo is likely but not certain. So more waiting for results. I foolishly went into work today, thinking I could manage, but the phone call from the BCN has floored me! Sorry for the rant, just needed to tell some lovely people who would understand.
I hope you are all having a better day and that all wounds/breasts/nipples are healing well! Xox
BIG HUG Ellie’s mum… this cancer stuff is scary and let the tears come… hopefully they now know what they are dealing with and the treatment plan will be what you need to deal with it… I agree with Quaggie it can be a pile of poo, know that we are here for you and sending positive thoughts and hugs of support Wombat xxx??
Another big hug from me too elliesmum. It just throws rubbish at all of us in every direction and all we want is for the end of treatment and not yet more. I do agree that at least the invasive cancer has been found and removed but i know it will take a while for it all to sink in and the worry and some anger will need to be processed. Rant as much as you need to all of us on here as we have all been there in some way through this.
Oncologist appointment today to see what the next step is and hoping for good news. Determined to get all the information I can about risks of a return of the cancer versis the benefits and side effects of the anything new. Research has shown me that letrozole can thin bones and then some sort of infusion is required every 6 months. The nusrse talked about another lady that had to have a chemo port put back in for the infusion which i am not happy to do. Hated the port as it was so visible and uncomfortable but accepted it for chemo but am not prepared to have it put back in for 5 years as i want to forget the cancer and not be constantly reminded of it. I know my situation is complicated with not being able to take some drugs due to risks related to my leukemia drugs, so i need to find the best combination for me mentaly as well as health wise.
Hugs to everyone
Hi everyone
I had my post op results appointment with my consultant this morning and it was good news!! It was just DCIS and none of the horrible cells had escaped so the mx got rid of it all which means I don’t need any further treatment. I was told that this would be the likely outcome but I don’t think they know for definite until they get it out so it was nice to have it confirmed. She checked my reconstructed boob and my wounds and said it all looked fine and then said she didn’t need to see me for 6 months! I was quite shocked at this as I thought I would have regular check ups although I know that if I’m worried about anything I can contact my BCN.
Jane - My consultant said that I will have the numbness for quite a few months but it will go, however there could be a slight bit of numbness that will always be there. Hope all goes well at your appointment on Thursday.
Thinkng about all of you waiting for results/treatment xx
Thanks for all of the lovely hugs ?. I’m feeling a lot better now. My boss has been great and would be happy for me to go home, but now that I’m feeling more pragmatic about it all I’ve decided to stay at work and get what I need to get done completed anyway. (I’m not very good at “resting”!)
It is such a rollercoaster ride, and your wonderful comments got me over the bump. Thank you again.
Great news, Linda, that there were no nasty surprises and the surgery was a success. Onwards and upwards! ?
Best of luck, Christine and Quaggie, for your next set of results. I wish you both the best of luck for positive outcomes!
Hi Belmont Rosie. I think we have to just trust that they will throw everything at the cancer and just cross are fingers. My tumour was small and nothing in the lymph nodes but it was a grade 3 tumour and I was told there was still a risk of it turning up in lungs or bones in the future. I want the treatment finished but i still have herceptin to finish plus letrozole and possibly zoladex which will go on for a few years yet. All we can do is take each day as it comes and live a little more than we would have done before we were diagnosed. Go on a few holidays and create special moments now but not expect the worst at every turn.
All the best.
xxx
Hi Quaggie, I had my Surgery on 13th September. I felt exactly the same as you. Told just lumpectomy on right breast, rads and tamoxifen. Then after MRI I was told mastectomy, because hey found two others. The Ultrasound did not pick them up.
lymph node biopsy and no rads just Tamoxifen. Luckily I didn’t have to go through a lumpectomy first. I’m waiting for my biopsy results but it will be another 3 weeks until I get those. But yes I became so doubtful and started to lose faith in my consutlant. I lost my father to prostate cancer 18 months ago and they kept changing the goal posts with him. I had that memory to contend with as well. But as my sister who’s a gp explained, our tumours are so small that’s why they don’t pick them up until we go under the knife and get the biopsy. We have to keep faith in our team, that they’re looking after us. They’ve caught the buggers and they will get the right treatment for us. I’m constantly stressing about the node biopsy and what if I need chemo? Well if that’s the treatment then that’s the treatment. But things have changed over years and they now weigh up if further treatment is worth it. It could turn out for example that having further treatment would give us a 5% chance of it returning. If we didn’t have further treatment it would have a 7% chance of it returning. Would a 2% chance be worth it?
Regarding Mastectomy, mine was a week ago. I had immediate reconstruction with implant. The reason I went for the implant is I wanted a
Shorter operating time and shorter recovery. My surgeon has done an amazing job and compared to my left one, it is slightly bigger and higher. But there must be huge amounts of swelling and it will drop. I also had 2 reductions in the past so I’ve got to be careful with how many surgeries I can go through.
Have you got a BCN, who can help you out at this time? Xxx
Quaggie - I’m realy sorry for all that you’ve had to go through and I know exactly what you mean about being bewildered having to make a decision about whether to have reconstruction and what type of reconstruction if you do. I felt exactly the same. I think it was the hardest decision I’ve ever had to make. In the end I opted for the LD flap recon which I had 4 weeks ago. I was lucky that I knew someone who had had it done and was able to speak to them about it but even once I had told my consultant what I wanted I was still wondering if I had made the right decision! (I am a very indecisive person).
Good luck with your decision xx
Hi Quaggie. Sorry that you have had such long drawn out process but it is not easy to know what they will find until they get in. With my first mastectomy 17 years ago they found more cancer in it that wasn’t detected so this time i went for the mastectomy right from the start as i couldn’t live with that doubt after the first one. The rest of the breast was clear but i am still glad that it was done.
My first mastectomy i didn’t have a reconstruction so this time i had them both done with a DIEP. I talked through the options with a surgeon and he advised this was the best optionfor me and would give the best result. This was dependant on my body shape and the LD was not possible as i didn’t have a lot of fat there but i did have plenty on my tummy. I asked about implants on the basis it would be quicker and shorter recovery but he told me there was a higher failure rate and i would need more operations in the future as they had a limited life. I think every surgeon will have a different idea but you just need to talk and find out what the options are and what is right for you. If you want it over with for now then why not go for no recon and take that option later if you want to. I lived with one breast for 17 years and it is not the end of the world.
Sending love and hoping you get the information to make the decision that is right for you. The DIEP is a very big operation and you really need to be sure you want it to make that choice. I think i made the right choice for me.
xxx
Oh Quaggie. Sending you great big supportive hugs and thinking about you. The lovely ladies on here have given you advice but I don’t have the experience of reconstruction to help. But know I am thinking of you and do keep in touch and let us know what you decide… ???
Hi Quaggie sorry to hear you didn’t get clear margins. I had chemo first which obliterated my tumours so instead of a mastectomy I had lumpectomy and full node clearance so I don’t have any experience to add. I hope you can get the answers you need and soon, a chat with a BCN sounds like a good option if you have one you can relate to. Sending you a hug x
Oh Quaggie, it is really, really s***. I hope you manage to get your head around everything and get the advice you need,
Nicola xx
I really am sorry to read this Quaggie. Truly. Thinking of you and wishing you strength.
Hugs aplenty x
Sorry to read your post Quaggie , send you huge big hugs and hope you can make a decision that feels right for you. There’s tons of posts on here and each lady has her own experiences and recommendations. Peronsally I am 90% happy that I had a LD flap recon at the same time as my mx. I owuld have preferred a DIEP but surgeon ruled that out. I was adamant I didn’t want implants and knew I couldn’t cope with looking down and seeing only one breast if I’d not had a recon. For me, I made the right decision even though it’s a long hard slog.
Fully agree with Feenix’s post - use the “Someone Like Me” threads, talk to your BCN, ask her to show photos of other ladies who have had recon or gone flat.
Wishing you all best and hugs x
Morning ladies! This may seem like a strange and unimportant question - I had a WLE and my nipple was removed. My boob I think now looks like moomin… my question is my boob feels really heavy and I often find myself ‘carrying’ it and my non existent nipple is itchy… has anyone else experienced this ???
Thank you ?
Hi Wombat Woo, this isn’t something I have experienced but I have heard of ladies who have had mastectomy’s having an itch on the removed boob. I’m not sure about the heaviness though, maybe you should check that out with your BCN. X
I’ve been away for the forum for a little while and have just read through some of the latest updates.
Wombat, if your breast still isn’t feeling back to normal do get it seen to by the breast care nurses. I had my wounds checked as part of my pre-chemo assessment earlier this week and was told off for not getting it seen to earlier. I had been changing dressings on the drain wound (the only wound yet to fully heal) regularly and thought I was being sensible. It wasn’t infected but was still leaking fluid - and I also feel like I’m carrying it around at times, as you describe. It turns out that my body is still making too much fluid, causing the heaviness and preventing the drain would from healing. Cue more surgery (yesterday) and a delay of a week in starting chemo. As well as a telling off! So please don’t hesitate to ask your BCN team ?
Quaggie, I’m so sorry to hear that you’re still in limbo. This whole progress is rubbish, isn’t it! I keep getting thrown curve balls too, so you’re not alone in having to navigate an obstacle course. In terms of deciding what recon options you might want, I can only share my own experience. I went for an immediate implant recon, as I wanted a quick recovery time (have a little girl at home who needs cuddles!) and wasn’t sure how I would feel going flat. This was also the option recommended by my consultant. In retrospect, I wish I had gone flat. Lack of clear margins and lymph node involvement mean that I will definitely need radiotherapy (with a risk of capsular contracture), and the time taken for the final wound to heal has ended up delaying the start of my chemo. I’m happy enough with the cosmetic result - there is a slight mis-match in size, but it’s not very noticeable in clothing - I just wish I wasn’t worrying about the ongoing infection risk and other complications at this stage. Good idea to speak with people and think about all of your options ahead of time. Also worth bearing in mind, as some other ladies on here have indicated, that you may not have the right body shape for all recon options (many non-implant recon options were ruled out for me from the get go).
Thank you all for continuing to be such a source of support, advice and kindness. When I was told by the oncologist that I would need to start chemo as soon as possible - and that I couldn’t delay for 4 weeks to go on a trip to visit family in Australia that had been booked months earlier and that I was really looking forward to - I was upset. But I managed to pull myself together and remembered the fabulous support that you ladies continue to provide, and I realised that I can do this. We can get through whatever rubbish they throw at us!
Love and hugs to all! Xox
Wombat - I definitely agree with ElliesMum, any question or concern, we should contact our BCN. I have no hesitation in doing that. They don’t mind, they have our best interests at heart, and they will know if something is odd or not.
ElliesMum - good to hear you’re slowly getting there despite the trials and tribulations. It’s not easy is it? That’s such a shame you could not go to Australia but hopefully you can do that another time, but your health is important and your little one needs you.
My latest news is that I actually have some, both negative and positive.
I’ve been my surgeon every week since my op 6 weeks ago, partly for a recon check up, but still needing my seroma in my back aspirated weekly. Looks like it might be a steroid injection for me next week if I’ve built up yet another good quantity of fluid by next Wednesday - sure feels like it already since aspiration just 2 days ago.
Infection under my foob on the scar was healing after wearing dressings for a while and having anti-biotics, don’t need the dressings any more and let it “breathe” as much as it can under a bra/croptop, but will have it looked at again next week to be sure all good.
I think my foob is starting to increase in size (it was “made” from LD flap muscle/tissue/fat, no implant) whereas was smaller than my remaining boob, will monitor that till next Wednesday’s appt and see what he says. It looks great from the recon but a bit square in shape!
Started physio yesterday, she’s impressed with my mobility and arm movement already, so will be seeing her weekly for a while, have daily exercises to do, and she’s recommended a colleague of hers who does Pilates classes for BC ladies so will give that a go at the end of October (have to wait 10 weeks after op).
Pain and discomfort is somewhat lessened and more mobility but still on regular painkillers for another few weeks.
GOOD news is that FINALLY, after 6 weeks, my results are back. ER+ 8/8 and saw my oncologist last night, she’s told me to take tamoxifen for 5 years - will see my GP on Tuesday to get that prescribed - more as a prevention to reduce risk of BC in my remaining (real) breast but with aim of reducing reoccurence in my foob although unlikely as all was removed in the mx, but within the 51mm of DCIS was 0.4mm of invasive. So tiny that a) no results for HER2 as below 1m so no chemo needed (hurrah) and b) if I don’t get on with the tamoxifen after a few months to year, then, with her agreement and permission, I can come off it and we’ll take a gamble as I’m low risk. As I’m mid-menopause she thinks Tamoxifen is best but I need to have blood tests to confirm menopausal state (so happy that I haven’t had a period since last November, and very erratic before then).
Linda17 - how are things going for you - as we’re are LD ladies from a similar date!
So I wish well to all the ladies on here, lots of hugs and best wishes for swift resolutions, recoveries and pain free days. Wishing you all a lovely weekend.
xxx
Good to hear from you Jane. I was just thinking about you earlier as I knew you were getting our results yesterday. It’s good news that you don’t need to have any treatment apart from the Tamoxifen.
I am doing ok thanks. The discomfort and tightness seems to get a bit better each day although I don’t really notice unless I think back to a week before and realise that I am getting better. I’m not sure if my nipple is still bleeding as I had a dressing put on at the beginnng of the week and was told to keep it on until my next appointment which is on Tuesday. I’m hoping it will be ok when my consultant takes the dressing off then. I’ll let you know.
It’s good that you’re seeing a physio. Was this sorted out for you through the hospital or is it something that you have sorted out yourself? I only ask because nobody has mentioned seeing a physio to me. I am doing my exercises and try to go for a walk every day and have started doing a few more things round the house (nothing too physical) but I haven’t tried driving yet. Are you managing to do a bit more?
Best wishes to everyone xx