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Surgery May 2018

Feenix
Member

Re: Surgery May 2018

Jazza.... looking forward to hearing you are through your op tomorrow and recovering well ... xhugx

cdc1811
Member

Re: Surgery May 2018

Hi Feenix The micromets issue is certainly an interesting one. I did look into whether they would lead to a recurrence when my Mum was diagnosed with them last year. We were told because she was 80 they would not worry about them and she didn’t have chemo - just radio and hormone therapy. I’ve also heard a little about immunotherapy. It’s good to hear progress is being made scientifically and new developments in treatments are being made whether someone is ER+, HER2 + or Triple negative. Hope you are doing ok after your re-excision. When do you get your results? Hope it’s the best news possible for you. Take care xxx
cdc1811
Member

Re: Surgery May 2018

Oh my gosh hadn’t read your update mcnulcc. The reflexology and pampering sounds fabulous. Love the idea of a massage too. I know there is a Haven Centre in West London which is a bit of a trek for me but offers similar things. You’ve inspired me to get in touch with them. I’m also rather waiting for my results before I commit to anything, My appointment is this Friday. Hope you’re enjoying pottering in your garden. I’m In a flat so no garden 😢but look forward to walking through our beautiful local park on the way to collect my daughter from school. Best wishes ps I did a mindfulness course but found it a bit hard going. I did like the idea of living in the moment but think sometimes with BC you don’t have a choice but to do that.
cdc1811
Member

Re: Surgery May 2018

Sounds like your local Sunflowers Centre really has a lot to offer mcnulcc. It’s good to meet others too. How was the reflexology? Relaxing I hope xx
cdc1811
Member

Re: Surgery May 2018

How ridiculous! Last thing you need is the bother of having to rearrange appoontments Kip. Glad you’ll be getting the scan done sooner tho. Will be thinking of you tomorrow and hoping for good news for you. My oncologist has also talked about percentages to do with the benefit of chemo I believe. If I just had the one smaller tumour I think they would have said percentages meant It wouldn’t be necessary. I feel that at least the Oncotype test will give me peace of mind even if it comes back that I need it. Take care xxx
cdc1811
Member

Re: Surgery May 2018

Hi Jazza
Your local drop in centre sounds amazing! I have been using Maggies but don’t feel all that comfortable there yet. Having said that I haven’t tried any of their classes or events. Not quite feeling up to but I’m nearly recovered from second op. First few days were hard but feeling good now. Results on Friday so fingers crossed. Do so hope yours goes well. Will be thinking of you. Sorry you missed out on your Vienna trip but hope you and your son have fun at your Mum’s. Did you ever find out what the nylon is?
mcnulcc
Member

Re: Surgery May 2018

Afternoon everyone
Jazza.Reflexology was lovely and I think the fact that I could just be me and have 40 minutes of pampering was a brilliant boost. Really lucky to have such a great place near to where I live and would recommend everyone to see what they have locally. Jury still out on the mindfulness sessions but I will give it a few more goes.They offer facials and hot stone massage as well but think I will wait until after results appointment next week before I book any more treatments.
It's another lovely day here so going to Potter around in the garden for an hour or two
Optimisticmz
Member

Re: Surgery May 2018

Hi Cdc. I have sent you a PM. Michele
Fairy Dust
Member

Re: Surgery May 2018

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

cdc1811
Member

Re: Surgery May 2018

Hi ktk
Thanks for the update. Can’t believe you are starting chemo on your birthday! Also the day your son finishes A levels! Definitely requires a special celebration of some sort. My oncologist assured me that a lot has been done to reduce side effects so I hope yours are minimal. I was told I would have had/ will have six months of chemo but my drug regime is AC followed by T. Been given all he information to read but haven’t got round to it yet. Take care. I’ve really been thinking of you, just remembered. Is it the day your daughter comes home? How wonderful! Hugs xxx
cdc1811
Member

Re: Surgery May 2018

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.  

Fairy Dust
Member

Re: Surgery May 2018

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 

Jazza
Member

Re: Surgery May 2018

That's good ktk you were given the chance to choose your chemo start date. It will give you a chance to prepare but also time to support your Son. My Son did his A Levels 2 years ago so I know how stressful the exams and waiting for the results is. I wish him lots of luck xxx

Mcnulcc, glad you went to your local group. I too am not a social person but if there is a time to do something different then I guess now is the time!! 😁 I would be very interested to hear how your reflexology session went. I am going to wait until after my next surgery before trying out some of the therapies xx
Jazza
Member

Re: Surgery May 2018

Wow cdc what a day you had.....
So pleased you were able to challenge your oncologist and that they are happy to oroceed with the tests (albeit you have to pay). At least you will have all the information etc available to you to make decisions regarding your ongoing treatment. I do hope you get some sleep xx
ktk
Member

Re: Surgery May 2018

Oh well done cdc. What a great oh. So pleased that there are great options for all you + testers out there. Such a shame that the only option is to pay🤑
Feenix
Member

Re: Surgery May 2018

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

cdc1811
Member

Re: Surgery May 2018

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

Kip
Community Champion
Community Champion

Re: Surgery May 2018

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.  

 

ktk
Member

Re: Surgery May 2018

The way I understand it Kip is that there is x% chance of surviving 5 or 10 years. The percentage is the increased chance of survival that the treatment gives you.

So, out of 100 women, say 75 would survive 5 years. Chemo at 7% would increase this to 82 out of 100.

If this is incorrect please can someone put me right.

Of course, you could get run over by a bus.... Kxx
Feenix
Member

Re: Surgery May 2018

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

 

hugsxx

Kip
Community Champion
Community Champion

Re: Surgery May 2018

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

ktk
Member

Re: Surgery May 2018

Hi everyone. Here’s my update. Chemo will start the day after my son finishes his A levels(they allowed me to choose), which also my birthday, so we will have a little celebration then! Three cycles of FEC followed by three of docetaxel. The percentages were 7-8%. Not too happy about the Picc line, but they were fairly insistent. I’d be interested to hear any other opinions. Glad to know what’s happening. Good luck CDC, thinking of you later. Kxx
mcnulcc
Member

Re: Surgery May 2018

Morning ladies another bright day here. This time next week I will be sitting back in the hospital waiting room for my results appointment,trying desperately not to think about at the moment having had a bit of a bad day on Sunday the horrible what if gremlin having been working overtime. My daughter suggested I pop into our local sunflowers centre yesterday just to see what it was all about and what was on offer. What a surprise, yoga, massage, counselling, art groups reading group, mindfulness sessions to name just a few of the items on offee. Met a lovely lady who who is 12 months into her BC journey and it was good to hear her story and get some good information about our local hospital Rads set up. As I left she asked me for my phone number. About an hour after I got home she sent me a lovely text saying how nice it was to meet me and if I needed anything to contact her. I was so uplifted by my experience and would totally recommend that if you have a centre nearby just go give it a try. I'm not really a very social person so was a bit wary of going but so glad I did. Have an appointment this afternoon for a reflexology session then going to try mindfulness. Will let you know tomorrow how it goes. X
Kip
Community Champion
Community Champion

Re: Surgery May 2018

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!

 

Big hugs

Kip x

Jazza
Member

Re: Surgery May 2018

Good morning lovely ladies,
Good luck 🍀 today ktk and cdc with your appointments.
Dear Kip... I do hope you are ok..... I was told on Friday at my local cancer drop in centre (my first visit) that I could just pop on there and cry as much as I like when I like. They also offer all sorts of help, counselling and therapies. I have lived in my Town for over 15 years and I didn't know they were there!! Its a local charity and my BCN told me to just go in and try it. I am definitely going to go again. If you haven't found a drop in centre in your area then perhaps ask your Bcn. It may help. I would also encourage everyone else to seek out your local drop in centres. They are there to help both us and our families.
Feenix, thank you. I am OK but strangely very nervous about next op (I don't remember feeling like this with my first). My son has taken a couple of days off next week and we have decided to go up to my Mums for a little break away. He has booked our train tickets and as a treat he booked first class tickets as he wants me as comfortable as possible. We were supposed to go to Vienna a few weeks ago but we cancelled that because of the first op etc etc. Yes, as you I plan to keep to the instructions from my first op.
Found an odd thing though......was inspecting wounds last night and found a small nylon wire poking out!! Think it is in area the drain was. I will mention this to surgeon on Thursday when I go for op so they can do something about it whilst I am asleep!!
Right...well I best get dressed and go to work. I am very lucky....so far work have been great. It's only a mile walk from my house to my office so it's great and gives me an excuse to get out of the house every day, and work are happy to have me for as many or few hours as I can manage.
Have a good day all xxx
Feenix
Member

Re: Surgery May 2018

Morning all

 

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

 Xhugsx

 

 

 

Feenix
Member

Re: Surgery May 2018

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? 

 

Xxx

cdc1811
Member

Re: Surgery May 2018

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

ktk
Member

Re: Surgery May 2018

Hi CDC. No. I went back to work today and didn’t have time. I’m sure it is just the scars settling down. I am so sorry to read about you and your daughter. What an amazing girl. Children are remarkably resilient but it doesn’t stop us worrying about them. I hope you get your entertaining dressings off soon. My visit with the oncologist is at 9 tomorrow. My son has insisted I text him at school as soon as I know what is happening. I hope he isn’t planning on taking his phone into the exam!!!

I am also not sleeping too well, but I am not a good sleeper anyway. Be good to yourself. Big hugs Kxx
cdc1811
Member

Re: Surgery May 2018

Hi ktk Did you get to talk to your BCN about the stitches and the chording? I do hope so. Been thinking of you. xxx
cdc1811
Member

Re: Surgery May 2018

So sorry you are feeling so down KIP. Please don't ever feel you need to apologise for sharing those times. Whilst it's horrible to hear you are having such a miserable time I think its safe to say we have all and will all feel like that at different points. Its totally understandable. I have been listening to relaxation music as my sleep is terrible at the moment. I don't know if its something that might help you. I have also stocked up on some medication for insomnia from the doctor and anti-nausea tablets. I went to the GP about my daughter's rash and he ended up telling me I should book an appointment with him as I let slip I am starting to feel lower and lower. Will see him next week for some advice. I don't have any ideas about how to stop the leaky eye moments because since my second surgery they are a regular occurence for me- sometimes at unexpected moments. I really empathise when you say you look at your children and start sobbing. I have one 9 year old (and 2 teenage step-children who don't live with us on a regular basis). She has had to come with me to my last 3 appointments because of half-term and INSET day today. I constantly worry about how this is affecting her. She seems remarkably calm and then will say something that just 'gets' to me. On Friday she asked my surgeon if the vacuum dressings would 'suck my cancer out!'. She sometimes stares at me intently at me and puts her fingers under my eyes to check if I'm crying. It breaks my heart. There is so much worry and uncertainty when waiting for scans and results too especially with all the aches and pains going on. I was feeling upbeat about the new research regarding chemo but my surgeon has brought me down to earth a bit as she thinks the oncologist will also take into account the fact I have bilateral cancer, large tumours and I am pre-menopausal and will still want me to have it. Oh well I will know by 2pm tomorrow afternoon. I hope you have had some brighter moments during the day. I think organising the wig appointment is a great move to get ahead before chemo starts. (No pun intended!) I have had some positive news today as I found out my wounds have started behaving on the left and healing properly and now I just have a normal dressing that side now. Hoorah! Only one motor to annoy me and reduce my movements now. Take care and huge hugs XXX
Kip
Community Champion
Community Champion

Re: Surgery May 2018

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

mcnulcc
Member

Re: Surgery May 2018

Kip. Regarding wigs. My very best friend is a hairdresser who just happens to work at a wig shop who supply and fit wigs for all NHS patients in our city. She was with me when I had my diagnosis as she is just the right sort of level headed person you need when faced with such devastating news.
She recommends going to the shop before you loose your hair for a number of reasons. Firstly they can see how you wear your hair normally, start to colour match etc, give advice on when you might want to cut your hair shorter and ultimately perhaps shave it. They can also suggest new styles and colours that you may have thought of in the past but not been brave enough to try. At the shop where my friend works they also have a range of scarves etc that you can buy as well as products to use while you are going through treatment. I have always admired my friend and her colleagues who are beautiful caring people this is more than a job to them they care about their clients and I have often said that if I ever needed a wig I would be well looked after. I am 100% sure that the staff at your local shop will be exactly the same. Please let me know how you get on and if you think she can be of any help in providing you with practical advice let me know. Hopefully I won't need her services but if I do she has told me she has wigs waiting for me with the X factor.!!!Sending big hugs xx. Chris
cdc1811
Member

Re: Surgery May 2018

Oh no ktk sorry to hear of your problems. I hope the BCN can help you. Definitely a priority to get the stitches and cording looked at. I imagine it’s somewhat disheartening to hear positive news for others regarding the chemo when it is not applicable to you. I’m sorry it won’t be of benefit in your situation. Hoping you have a good nights sleep. Thinking of you and Sending big hugs xxx
Feenix
Member

Re: Surgery May 2018

Ktk ... hope you get seen and sorted tomorrow 

Night xx

Feenix
Member

Re: Surgery May 2018

Evening

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 !!?

Night All

xx

ktk
Member

Re: Surgery May 2018

Thanks for your replies ladies. I need to speak to BCN tomorrow as I have stitches poking through my scars. I also seem to have what looks like chording under my skin beneath my boob. I’ll ask her to see if she can arrange to send the reports.

I was interested to read the info on treatment but it doesn’t apply to triple negatives which don’t respond to the hormones, so it is chemo or nothing.

Very tired tonight. Night ladies xx
cdc1811
Member

Re: Surgery May 2018

Glad the meeting with your friend went well Kip. It sounds like the wigs are easy to care for too which is something that bothered me a little. You’ve made me rethink my wig decision. And I will have a look at what is on offer at least. My Motors have been behaving quite well this afternoon but as I’m typing this one is going beserk whilst it tries to create a vacuum- think I’d better go and check the adhesives and make sure there are no breaks in the seal- what a palaver!!! That’s the only way to keep it quiet- well that and taking out the batteries!! Take care xxx
cdc1811
Member

Re: Surgery May 2018

I heard that report on Radio 4 news too Michelle. It is of great interest as they said that it may mean some people will be told they may not need chemo as soon as tomorrow!! I wonder if it will have any bearing on those of us with oncology appointments coming up?

Kip and ktk I have had to ask specifically for histology reports but I automatically got sent letters from my Breast surgeon when I had the results of my original biopsies and then again after my first surgery. Usually had to wait a couple of weeks for them but since I was going in for my reexcision the day after my MDT meeting she just handed me a copy on the last occasion. I suppose it was so I understood what the surgery entailed and why it was needed. This is the letter which mentioned I’d be having chemo. To be fair once I knew I had bilateral cancer she has always told me she expected me to have chemo. I just hadn’t wanted to believe it so kept thinking/hoping that the oncologist would come to a different decision. I really would ask for copies of letters if you have not been receiving them as we are entitled to be as informed as possible.

I am feeling slightly brighter this evening as my OH decided to google my oncologist and she is the head of her department and incredibly well respected. We even watched her on YouTube giving talks about new research into Breast cancer drug treatments. All the science goes rather over my head.. However, the thing that came across most for me was her passion to ensure people have a good quality of life whilst going through whichever chemo they need. I’m hopeful she will do all she can to lessen any side effects. Still feeling daunted but she seems very approachable and will hopefully allay some of my fears. Hope everyone is having a restful evening xxx
Michelle21
Member

Re: Surgery May 2018

There is an interesting article about chemotherapy no longer being necessary for many women on the BBC news online today . It’s not relavent to me as I’m Her2 + and have infected lymph nodes but it may be something you want to ask your oncologists about. X
Kip
Community Champion
Community Champion

Re: Surgery May 2018

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 

 

 

Feenix
Member

Re: Surgery May 2018

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 !!

xx

ktk
Member

Re: Surgery May 2018

I am interested to see that so many of you have seen details of your diagnosis and received copies. I would have really liked this information, and even told BCN but all I have ever had in the post is appointments! At my post surgery meeting the registrar said specifically ‘you will be offered chemo’. Having read all the forum posts I don’t know if this means that they think it is advisable or not. I wish I had the diagnostic information ahead of the meeting on Tuesday so that I can make an informed decision.

Hope you are all having a nice Sunday. Gentle hugs to everyone. Kx
cdc1811
Member

Re: Surgery May 2018

Thanks Feenix xxx
Feenix
Member

Re: Surgery May 2018

Sending a gentle hug cdc and Kip

xxx

 

cdc1811
Member

Re: Surgery May 2018

Kip that’s very helpful. I think my second surgery and delayed wound healing is delaying things somewhat. I have to get dressings changed two or three times a week. So fed up with it. I joke about the electric motors they ise to create the vacuum but I’ve been in tears this morning after they kept going off intermittently through the night, I’m exhausted. I have a physio appointment, wound check and dressings change on Monday and I sincerely hope my surgeon can give me a normal dressing at least on the left. I reread the letter she wrote the day of the MDT meeting when she got my first results and the day before my second surgery. It says ‘’irrespective of the outcome of the reexcision of margins the next step in your treatment will be chemotherapy.” It’s so horrible to see it in black and white but I’m hoping the oncologist will shed some light on the decision. I will certainly join the chemo thread once I know which day I will start. I’m petified too Kip. I’m not sure why but since my second surgery I’ve been struggling with nausea, loss of appetite and sickness and that’s before I even start the chemo!! Hair loss I can deal with (I think!) but the prospect of feeling even more nauseous and sick coupled with the fatigue is almost too much to bear. I’ve considered saying no to the chemo but it seems pretty clear cut that they think I need it. I will certainly join the chemo thread when I hear when my chemo starts. It’s good to know you’re finding it helpful. Take care and I really am thinking of you! Hope you are abl e to enjoy the rest of your weekend. Xx
Feenix
Member

Re: Surgery May 2018

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 Smiley LOL

 

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

 

cdc1811
Member

Re: Surgery May 2018

So glad you had a great day and hope you enjoyed your hotel stay. Have a lovely lunch by the sea. Good luck to your son with his revision and A Levels. Im sure he’ll do well as it sounds like he has a very good attitude to studying. Xxx
Kip
Community Champion
Community Champion

Re: Surgery May 2018

Ktk, sounds like you had a fab day,  let's hope today is too XX 

Kip
Community Champion
Community Champion

Re: Surgery May 2018

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