Thanks CDC. The surgeon told me on my snb results day that she'd checked and although I had 1 node involved, I was still eligible for the test. She then referred to what the results had indicated when giving me my post op results last Friday.
It's great, I think, if your results are clearly high or low, as it does feel like you have a more secure foundation for your decisions/treatment and moving forward, but I think if you get the middle ground results it could be much harder.
Best wishes and good luck to everyone on here. Xxx
Hi Fairy Dust I hope you are recovering well from your surgery. It is very interesting to read your experience especially with the nodal involvement. Thanks so much for sharing it. I am so pleased you got a low result. Did you have to ask for the test or was it offered to you? I was told my micromets definitely ruled me out but glad we persisted as it didn’t mean I was ruled out completely just from having NHS funding. There is obviously a big difference and I think people should be made aware they can self-fund. It is only suitable for certain types of breast cancer and after reading more extensively the headlines may be over optimistic but I am glad I have the opportunity to go for it. Whatever the result I will know I will be able to make a more informed decision, Take Care and all the best.
I'm from the April thread, awake and being nosey! I do have some info for you though. I had muktifocal 2 invasive ductal and a large area of DCIS with 1 node involved 3.5mm. I've had double MX and immediate DIEP flap reconstruction 5weeks ago. I've also had the Oncotype test despite the 1 node. Came back with low results for recurrence and metastases, so no chemo. Now on Amiridex. Do that research as they are doing it for low number nodal in involvement. I'm in Derbyshire, but my surgery has all been done in Birmingham if that helps. Good luck. xxx
Hi cdc ... gosh . what a day for you. I’m doing a bit of reading on onc dx and endopredict tests and OH is trying to get the recent research paper to mull over. It does state in Nice guidelines that the onc dx is for those with no lymph node involvement whereas the endopredict test is suitable for both no -ve nodes or up to three +ve nodes ( both for early bc, er +ve, HER2 -ve ). The tests can be self funded, not cheap but worth it for peace of mind, one way or another. It’s interesting that having micro mets is classed as negative nodes/not significant yet not applicable for the onc dx.... !!!! That may change. Lots of interest in immunotherapy now... that seems to be the way forward next in terms of research.
Anyway definitely some hope for you and having the test would give you confidence in treatment decisions.
I hope you are managing to get some sleep and that your nausea is subsiding and appetite picking up xhugx
Sorry not to address everyone individually. What a lot of information and dates to take in! I’m obviously thinking of everyone and sending hugs.
My head is in an absolute spin! Went to see the medical oncologist after getting weighed and measured for chemo drugs. She began to explain the reasons they want me to have chemo. It boils down to uncertainty over recurrence in bilateral cancer as all the predictive tests only look at a single tumour and I have/had two. There is just no way of inputting my data into the usual programmes they use. She then said because of my young age (i’m 50!), pre-menopausal status and large size of the tumour on the right and also as I have micromets in sentinel node it was better to err on the side of caution. I decided to ask about the new research from America but she said I wasn’t eligible for the NHS Oncotype test because you have to have no involvement in the lymphs at all and my tumour is over the 5cm limit (its only 0.2cm bigger!) However, she mentioned some women with micromets had had their tests funded as part of a trial but the funding had ended. I was gutted and we started to talk about the chemo regime. However, my OH suddenly asked “but what if we paid ourselves?” She said it would be too expensive if we don’t have insurance (we don’t) but we persevered and she told us it would cost $4000. We didn’t hesitate to say we wanted to go ahead. We will scrimp and save a little and won’t be having a foreign holiday this year so will use the money towards the test instead. The oncologist still explained it wouldn’t necessarily rule out chemo. If my results come back in the higher end of the intermediate grey area she still wants me to have it. I can deal with that. Ultimately she said if she was in my position she’d take the test. She still needs to talk with my MDT. She wasn’t at the meeting where the original decision was made but since she is the head of medical oncology I’m sure they will be happy to agree with the decision. I don’t need any further procedures as they will just send a sample of my tumour to the lab in America. I should hear back in a couple of weeks.
I am just stunned that the results of the medical research announced at the weekend have given me some reason to be hopeful. I feel incredibly thankful that my OH asked about self-funding the test. I really hope there will be more research over the next months, years which will help us all in our battles with this wretched disease. I popped into Maggies after my appointment to share my news and they said they were really pleased I had as there may be other women with micromets etc... it could help. They will certainly encourage them to ask the right questions.
Only other information I received today is that I will need to take Zolidex to suppress my ovaries alongside the tamoxifen when I embark on hormone therapy but I will deal with that when I get to that part of my treatment which will be a while yet.
Hope everyone is having as restful a night as possible. Huge hugs to you all xxxx
Oh I see KTk I wasn't told any percentages but not sure I would cope with knowing, they just said I would really benefit... I am presuming that's a good thing? Made an error earlier on here and ended up in the secondaries section and that wasn't a good read! I logged out sharpish and it really got me scared, must make sure I log in correctly.
I definitely felt different about second op also Jazza and I was more emotional before it too... leaky eyes. I think it’s being back on the results roundabout. Your drop in centre sounds great. You’ll be having a lovely treat next week with your son, visiting your mam... something to look ahead to. Sounds as if you might just have a little bit of stitch left there, which can happen ... your surgeon will sort that out quite easily on Thursday. Pleased your workplace is so supportive too. Will be thinking of you and wish you a speedy recovery xx
What a palarva with your appointments Kip. Feeling a little better is good but I guess this rollercoaster we’re on will keep on unbalancing us as we go along... surreal is an oft used word and is very appropriate. Your children sound so sweet.
mcnulcc .... I’ve an appointment too in a weeks time ... mine may get cancelled as there are still delays here. I still feel like a rabbit caught in the headlights whenever I plonk my bum on the clinic room chair. Your centre sounds really good too and you have a contact there also. You’ll be well relaxed this afternoon ... enjoy.
Pleased you’ve got your plan in place ktk and are able to have a birthday celebration beforehand. You’ll get lots of information/support on the chemo threads and kip will be alongside you.
Thinking of cdc this afternoon
Hi KTK, so we will be on the chemo merry-go-round together. I haven't had a chat about PICC lines or anything, perhaps they will see what happens? others seem to get on fine with one and it does deal with the issue of getting needles in etc. What are the percentages you talked about, nobody has told me that, just said I would greatly benefit from chemo.. doesn't feel that way to me. Love kip xx
Morning everyone, feeling slightly better this morning, just comes in waves of panic and fear, but as you all say, we all go through it and you just have to ride the storm. My children are coping so well but my daugther does keep checking if I am crying and saying she is scared to see me ill after chemo. I got my appointments this morning for bone scan and MUGA heart scan both of which are not doable. The bone scan is booked for the same day as first chemo and MUGA for 4 days later which cannot be done within 5 days of chemo.. well done hospital!! why don't they talk to each other? Now rearranged bone scan for this Thursday, and MUGA for 22nd June.. so scared of the results but hopefully all fine and I can concentrate on the chemo. Stil can't quite believe this is happening...
Good luck CTC with your results, glad to hear wounds are beginning to behave themselves.
Hope everyone else is hanging on in there.
Hope you ok Bridget... haven't heard from you for a while.. hopefully thats because you are enjoying life and moving on!
Jazza ... how are you? .... I’m conscious it’s your surgery in a couple of days. I’ve found the recovery second time round much easier, probably because it’s a much shorter op. I’m following all the instructions I got for after the first op and taking things easy even though I feel I could do more.
I hope appointments are as good as they can be today cdc and ktk .... sending virtual support to you both
Kip .... how are you this morning
Bridget ... how are you doing ... and Dazee too ?
I hope some Zzz’s were had by all last night
Sending a group hug.... gently.
We need leaky eyes ... they’re are normal.... I liken them to a safety valve as we need to get rid of the tension, pressure, frustration, anxiety, fear, panic.... somehow. I find swearing helps and I’ve been doing that a lot lately .... !!! (Not recommended if young children around though)
It was therapeutic in a way... if you know what I mean.
When I was totally stressed I did something called yoga nidra for 20 minutes, meditation really. Although it’s not to make you go to sleep I did it at bedtime and it helped me relax then I found I slept well. I’ve got a downloaded file which I use... got it from my OH who’s done the course in India. If you want to try it I can see if I can upload it or you can find meditation stuff on YouTube. Or use relaxation music like cdc... there’s also free apps out there.
Kip ... just keep on saying what and how you feel any time you need to. Getting your hair cut is a big thing but you are taking steps forward and working through practicalities, including your appt at the wig shop, which will hopefully give you some control back. Hope you get your scans soon.
ktk ... hope work was ok. Will be thinking of you tomorrow morning. Hope your son does ok in his exams. You’ll have your daughter with you soon too.
cdc .... will be thinking of you tomorrow also. Pleased your wounds are healing and you’ve been able to get rid of one of those pesky dressings. Your daughter sounds lovely... Ktk is right ... children are resilient. Pleased you are going to have some input from your GP and that you’ve got some meds to help with insomnia and nausea.
Mcnulcc ... hope you’re doing ok... I think it’ll be your results later this week?
Gosh that’s an early appointment ktk. Hope you’ve managed to get some sleep. I’ll certainly be thinking of you. Mine is at 1! Will you get a chance to see the BCN nurse before or after your oncology appointment? Just for some reassurance. I do hope so. Hope your day at work went well, Good luck to your son and birthday wishes to your daughter. What an incredibly busy and important week! Take care and hugs xxx
Chris, thanks for that, I have just called the wig shop and arranged an apponitment for Friday morning. I just feel I need to get things sorted before chemo begins as thats one less thing to worry about. Hair will cut short by then but they said that makes it easy to fit different ones on and they can see my natural colour (although I have no idea what that is really - its whatever is on offer in Tescos at the time!).
I too read the article regarding the chemo, unfortunately having infected nodes rules me out too but its good news for lots of people out there. Good to know steps are being made all the time to make this more bearable. I am feeling so down at the moment, those leaky eyes are turning to floods, don't know how I will make it through to chemo next week... the thought just terrifies me. Keep looking at my children and sobbing and I know it doesn't help them but I just can't stop.
Not sleeping again, feel sick with worry and fear and just want the body scans over to know its not spread.. every ache and pain is terrifying me at the moment.
Sorry for the downer... hope you are all doing well.. that troublesome stitches, noisy dressings etc are improving..
Love Kip xx
The new research results are certainly of interest to many. I’ve not been offered the oncotype dx test however I’ve not seen an oncologist yet. I understand that it’s not offered everywhere which could have to do with funding and obviously you have to meet the criteria. Surely, if you meet the criteria following op/histology confirmation, the onc dx test should be done automatically no matter where you live.
Hope you have a better night cdc and your appts tomorrow go well.... busy day for you.
Meeting your friend has been a positive experience for you kip.
I’ve hit the pit early
Start of another week tomorrow ... where’s the time going to !!?
Thanks for the hugs Feenix. I haven't had any copies of my reports maybe I should ask? Saw my friend about the wigs, they really are amazing, you would never tell. She uses her nhs prescription which you get if you require chemo, you have to pay first £73 approx. Hers are synthetic hair but lovely and light not itchy or too hot and underneath they have a lace bit which is see through so where the hair parts you see you own scalp and it looks real. Apparently easy to care for just wash it in sink, leave to dry on a wig stand, shake it and wear, no styling required. The hospital have given me a leaflet for a local shop to me which is where this lady goes so I will be phoning tomorrow. Feeling little more posuposi regarding that part at least. She also said they advise going whilst you still have hair so they can colour match if needs be.
CDC hope those dinging dressings behave tonight!! Love to all XX
ktk...I asked for a copy of my histology report and we should be offered copies of our GP letters. I have only received a copy of one GP letter so far but I have asked the secretary to send me copies of all. I usually ask for a copy of the GP letter when I’m in any clinic appt... I’ve not been on the ball lately !!
Kip ... the gals will be glad of tips you get from the lovely lady you’re meeting up with regarding wigs. Those leaky eyes are difficult to control at times aren’t they but, although you’re “wishing the summer away” you are looking ahead and I hope you have plans. You’ll have good weeks over the summer. Hope today is sunny where you are xx
mcnullc... Chris ... having some normality is good. Waiting for results is an anxious time ... I’ve got an appt for the 12th but it may change as there have been delays here. Hoping none of us gets any unexpected news from our appts. Exercises rule ok
cdc... the innovation regarding dressings is amazing... yours sound very “musical” but might be annoying overnight unless they lull you to sleep ..maybe !!! I’m hoping they are behaving for you today and you will avoid another trip to hospital. Youll feel much better once your wounds improve sufficiently to get those dressing off.... a big step forward. I do hope you get through your Tuesday onc appt ok and then you have your results on Friday ... a lot onboard this coming week. I started walking for longer yesterday although I did feel tired. I think it was because of missing a nights sleep post op and catching up with “fuel” intake. I’ve slept well the past couple of nights which has helped. Popping to shops, eyeballing cars and pottering today ... have a good day xx
Ktk ..... have a lovely overnight break... hope work return goes well. Will think of you on Tuesday xx
Sending hugs to all xx
CDC, after my surgery I saw nurses once for dressing removal, then I saw my surgeon and BCN on Thursday who gave me results and the oncologist came in and discussed the chemo. I got a phone call the next day to give me the start date so haven't seen oncologist apart ffrom then. Your hospital may do things differently or it may be because of your second surgery ? Still can't believe I'm having chemo, haven't felt this scared since I heard those words.. you have cancer! However I have now joined the June chemo thread and taking advice from them it's good to see they are managing ok. Good luck with the oncologist XX