Hello, well chat with ONC didn't really help much, I have to see the surgical team on 19th Sept to have a better discussion as to what they suggest for node removal. She wasn't sure whether they want to take level 1, 2 or or all 3? She thinks possibly 1 & 2 and then rads to collar bone for safety? So have to wait and see what surgeon suggests. Also double checked on size of lump they removed as there was some debate. Apparently it was initially 22mm but when checked under microscope it was 55mm... thats some discrepancy but she explained that the lump would have had "feelers" and bits of fatty tissue and scarring which may have made it bigger and they like to use the largest measurements when planning treatment to ensure they do whats best. Thankfully still Grade 2 though. And as she said, its neither hear nor there as it has been removed anyway. So have to wait until Sept to find out next step but she said it shoud take place 3-4 weeks post chemo and then roughly 4 weeks post op for rads to start, so hoping to be all finished by Xmas.
So more waiting around I guess, but still have 2 chemos to deal wiith before that, she may reduce the dose of the last one if my fingers still feel numb.
Hope you are all feeling well and recovering nicely!
They don’t make it easy giving us decisions to make ... not an easy thing Kip. I hope you get answers to your questions from your onc which will hopefully help you. Fingers crossed you get your chemo reduced and it helps with se’s.
Hi Feenix, I think I have decided to have them out, I prefer the thought that they are gone I think. I have appointment tomorrow with Onc so will discuss it a bit with her, I can't remember if they said full removal or just the first level.. pretty sure just first level but need to go over that with her and the benefits/negatives to it all. Also hoping she reduces my level of chemo for next time as still have no taste buds and sore tongue and only 6 days til next chemo... yukkk.
Michelle .. you’re progressing well.
Kip ... great to see some of your taste buds are back and ulcers have gone. At least you’ve been out for a walk today, I just did a bit of wiifit plus a walk around a few shops. Go with the flow til you’re finished chemo ... how are you doing deciding on ANC or rads?
Im hoping for a warmer day tomorrow... fire on again today
Well done Michelle, glad wounds healing and you are feeling ok.
feenix , any distance on your bbike is great, very jealous, just been fir a walk and feel zapped. I hate feeling weak but i guess must accept its all part of the treatment, just so tiresome!
Kip ... I didn’t go a great distance on the bike but it was a start... I’m taking it slow. I do hope your mouth improves so you can enjoy your food again before youre due next T.
cdc ... good to see your scan confirmed it was your prior gall bladder history... relief 😃
sending oh off to help out family ... too soon for me to do long haul....have things planned to keep occupied and I’ll be walking lots plus of course there is retail therapy 😊
Hey Feenix goid to see you re out on your bike and enjoying life well done. Michelle you sound like you are making progress to thats brill!! Id llove a holiday at the moment but we will be waiting til new year i think when hopefully all this done. Just want my mouth to gef back to normal before next T so i can enjoy some food for once. So tired too slept 9 houes last night but still feel 😪
Pleased you’ve managed to get out on your usual walk Michelle. I didn’t have any clips in but I only had snb when I had my WLE in April. I’ve taken plenty out and they are usually straight forward to remove. If you have any numbness there you won’t feel anything. I have to say I felt rougher after my first op than my mx..and it took longer for me to recover and not feel knackered. I’ve been driving with no discomfort but after wle it took me at least 4 weeks to feel comfortable changing gears, and then it still twanged.
After my first op boob was smaller as I lost the nipple area.. I likened it to a cupcake with the cream taken off leaving a noticeable dip.... After the re excision it was getting like an Eccles cake 😂 .. it was flatter and smaller still and looked higher than the other. The difference in size and appearance didn’t bother me and I was quite happy wearing a non padded bra. I was told I could have lipo filling and of course many women have a silicone prosthesis to fill the gap. Some larger ladies may opt for a reduction on their good side if there is such a discrepancy in size. Hopefully your results will be fine, I’ve got everything crossed.
A break away is Fab.
Enjoy the weekend, in spite of the expected BH weather
Michelle.. had a go on the old bike again this morning, just to the village shop again, but no jelly legs afterwards... I’ll definitely have to keep it up. I’ve been doing a bit of garden raking...tidying up a bit after OH did the hedge. Feeling ok but not overdoing it.
How are you doing? Is your pain more manageable now? Keep on getting out for those walks.
Hope you’re all doing ok today
Fingers crossed for a good weekend Clare. 3 hours sleep is pants but I hope you had a good catch up nap. I tried out my old bike round the village ... I made a bit of a racket as my rear brake is soooo noisy. Just goes to show how much my muscles have gone this year as I had jelly legs when I got back home... need to bike on a daily basis if possible.
I hope you have a better sleep tonight xx
Think I overdid it yesterday so having a bit of an up and down day. I did only get 3 hours sleep last night! Just off for a nap. Thankfully nausea isn’t continuius this cycle and I have had some momenrs of respite so hoping that I’ll be nausea free by the end of the weekend. Xxx
Kip ... definitely a bonus not being able to taste hospital food. You’re having a particularly rough time and now your veins are going walkabout ... b*gger.... it’s the pits ... sending gentle hugs xx
Oh Kip I'm sorry you are really not where you want to be right now - speedy mending and home soon.
And big congrats to your son - it makes us so proud when our children do well - because it's a 'feel good' for everyone, and we know that they are setting their futures and opening doors for themselves. Have a wonderful celebrate as soon as you can x
Hi thanks Feenix and Michelle... Woken up today with thick white tongue again ... Please come back taste buds i miss you.. Casa NHS no fun 🙁
Kip .... bloody hell.... didnt expect to see you’re in Hotel NHS ... hope your bloods improve and you escape home ASAP . Mega congratulations to your son on doing so well.... you’ll be one proud mam
sending hugs xxx
Hi Paulus may i say a big thank you for your lovely post, as j am currently in hospital with neutropenia i am quite low and yiur kinds words meant so much. I too skirted on the outside of the forums initially but they have proved a ljfeline in this difficult time. Im glad they have helped.
I was admitted yesterday with neuts 0.1 so having IV antibiotics and have to remain in isolation until rhey come back up. Ive missed my son getting his gcse results today whixh was sad bjt he did realh well, very proud mummy.
This chemo cycke has bee .so tough just hooe tomorrow the old mouth gets its act together and heals up
Thanks Sally. Hope you’re doing ok and se remain minimal. I see cooler weather is on its way .. good for sleeping. Hugs xx
Thanks for that Michelle... support has been two ways. Pleased you’re booked up for moving forward.
Have a good night xxx
Evening Clare. No I’ve not got the app but I’ll certainly have a look. I’m finding the Letrozole ok...I’m hoping to stick to the Abbott brand. Tbh I just take the tablet and don’t really give it much thought. I started taking it at bedtime straightaway and so far so good. I have to say I didn’t have a bad menopause, unlike some women, so I’m hoping I’ll be ok with the hormone treatment.
Hope you’re doing ok and getting some sleep
Evening Paulus and welcome. What a really lovely post and thank you for your good wishes. Pleased you took control and went your own way .. hope you’re doing ok. I hope you’re finding the Letrozole ok.
I have such great support from all the threads...I started off in April surgery, after being diagnosed in March too and of course joined May.
We are all in this together.
Being emotional is normal ... youre going through such a rough time and you just want to feel ok and get through to the end of chemo. The thought of more chemo and se’s must be really daunting but you will get through it. I’ve noticed that salt water mouthwash is recommended often and would appear to work.... we use that for the usual sore throat/mouth.... I do hope it does the trick and your low immunity lasts as short a time as possible.
I’ve heard the moving forward course is beneficial...I think my bcn said she sorts out such things at the end of treatment. I can phone and sort out LGFB myself.. I’ve just found my information sheet with what is available in my area so might avail myself of some of what is available such as Reiki. You’re right about finishing treatments being the most daunting time, we get used to the regular contact with the professionals but can always contact them if needed. I think in my area they have dedicated staff for after treatment finishes who can be contacted if need be.
Ive tried out my old bike but just around the garden ... out round the village tomorrow once the seat is adjusted 😊
We should definitely all meet up.
Hope you get some sleep
Dear Kip, Feenix, Michelle, cdc . . .
You are some of the constants in my coming on to the forum, and sometimes I have felt like I am eavesdropping, as you have such a camaraderie between you all . . . of course there are other names I have seen aplenty, but it seems that you are the presence at the moment . .
I was diagnosed in March with IDC, found 'small' lump in right breast, wasn't looking, just fumbled across it, unfortunately. I'm 63 now, and me and doctors have as infrequent a relationship as I can manage. In the past 6 months, I unfortunately think I have had my fair share from the NHS, and I would prefer to see as little as possible of them from now on!
I never did checks, never went 'looking for trouble', because this was not on my agenda! I won't go into the ins and outs of my diagnosis, but it was a Grade 3 IDC, 2.2cm, ER8, and present in one node of the eleven removed when I had a WLE and ancillary clearance in early May. My 'margins' were not brilliant, but I chose to take my own path and risks, and settle for 20 zaps of radiotherapy, and continue on Letrozole.
Anyway, this isn't about me, I just wanted to explain why I have been on the edges looking in. All I knew was, The Lump had to go, and being incredibly private, very few people in my life know about the whole situation, and looking at me would never guess. One of the first threads I ever looked at was May 2018 Surgery.
I know you don't do 'brave' - but you are stronger than you know, and your openness and realities of your treatments must have helped so many people. I feel a warmth between you all, and that's lovely. I wanted you to know that ladies like you are complete shining stars - whether you want to hear that or not.
I wish you Feenix all the very best with onwards and upwards. And the very best to you all. xx
Hi feenix thanks for kind words, having an emotional day today, jusg fed ip of feeling poorly. Rang help line and they said it's because my immune is low thats tts taking a while to clear, salt water washes and wait it out I'm afraid. Sendjng family our for ice lollies as theg help too. I think we all expect to feel differentlg whe .We get some good news or reach a milestone jn this journey. I thought i wojkd be more relieved to be half wah through chemo but actually felt quite flat (to use your pun). I have looked up a moving on course run bh Macmillan for when i finish treatment as i think ill need some help emotionally with that. Aparrentlh its so comon to fjnd that the most diffiicukt time in fhis as you can feel very alone! .
I woukd live to meet up with you all sometime too, e must do it. kip
Hi Clare ... I had a splash of wine and it was enough for me. It’s an odd feeling not needing any more initial treatments ... sometimes I think I’m ‘missing out’ but I know if I’d needed anything else I would be having it.
I hope you’re not going to have such a rough time with se’s this time ... great you’re passed the halfway mark although you’ll be wishing you were finished. It must feel like it’s never going to end ..chemo is a true endurance test.
Hi Kip.. I feel as though I’m trying to run before I can walk so going to take it slowly...steady away. I’m like Michelle, I feel ok in my head but need to remember I still have some physical healing to do. I felt a bit ‘flat’ after getting my results (no pun intended) .. maybe I was expecting to get the usual bad news. Was cream crackered after just doing an afternoons cooking the other day. Still getting used to the new me but actually don’t think about it as I’m ‘me’ anyway ... if you know what I mean.
I think about you all, what you’re still enduring .. I hope the se’s of T get better ... sounds pretty grim. Hope you get your mouth back ASAP. Hope you got to your LGFB ... they sound good. Worthwhile to get makeup tips as well as the freebies... I’m still waiting for my ‘70’s eyebrows to grow back !!!
It is my aim to be positive Michelle but accept it won’t be 100%, nothing in life is that perfect. My OH has a positive outlook and we both feel it’s good to be like that as much as possible ... good for the immune system and mental health. Maybe I should start to have a daily Mantra... looking for positive sayings may have a Catch 22 effect 😃 Whatever is thrown at us we just have to get on with it ... that was my mams philosophy when dealing with ‘big issues’ in life. We are all dealing with bc, the treatments and there will be the after effects, whether physical, psychological, emotional.... like ripples in a pond... and we all deal with things as individuals. Let’s not forget our ‘significant others’ either.
Michelle, you will heal, it just takes a bit of time. I know you’ll just want to get to the end of all this and be ‘ yourself’ again. I’ve not had ANC but I expect it’ll take a good 2-3 weeks to settle swelling wise. After my wle it was much better after a couple of weeks. Try and get some good protein into you although I know it may be difficult with chemo after effects. Be gentle on yourself ... remember what you have just been through to kick cancers backside into touch... no mean feat. It’s good to have a cry though.
Keep up with the pain meds...potter... go for a walk.
Hi Feenix so pleased about your results, that is a relief and now you can move forward and get that bike and do all those lovely things. I hope you do something wonderful to celebrate . Your wise words really inspired me to look forward and not dwell on what ifs... Thank you for that xx
Michelle, sorry to hear you are feeling fed up it is usual to feel that way, .i remember after my op i sat in bed crying and said i felt ljke an old lady and that was withouth chemo in the mix. Take it slowly day by day and you'll get there xxx i geg the battery acid mouth... Bloody horrible I want my mouth back please!!!
How are you doing? Hope you’re not overdoing it and your pain is under control. Keep doing the exercises.
Treatment plans are definitely individual.
My idc was very small...8mm so originally I had the wle/snb to treat that and would have had rads afterwards ( it’s always presumed there is disease left behind). The dcis was the stuff driving further surgery to get rid of it so it wouldn’t become invasive again + it’s not sure whether rads is effective with dcis. There was no other invasive cancer found and nodes were ok. I did have a micromet in first sentinel node but other 3 were clear... that’s classed as negative. I was grade 2 idc, oestrogen positive and intermediate dcis. If my invasive was near my chest wall, or another found, or I didn’t have clear margins, or it was aggressive I probably would have had rads to chest wall but usually with mx you don’t have rads. As it stands if I am unfortunate to have a recurrence then I have rads to fall back on. I’m older than you but I don’t know whether that is a factor other than I’m post menopausal.
None of us know what the future holds but that is the same for everybody. I don’t really dwell on thoughts of recurrences/new primary... the what ifs. Before bc came knocking on my door I didn’t know my ‘expiry date’ and I still don’t. I don’t intend wasting a lot of energy worrying about something which is inevitable and is a fact of life. That’s not to say having a cancer diagnosis doesn’t bring dark thoughts with it, because it does, and I expect I’ll have my ‘moments’ but life is made for living, to make the most of how we want to spend our time. Keep a positive outlook.
Im certainly going to have a breather, although I’m still going to be on here as you’ve all given me so much support and we all know what it’s like. I want to see you all through. It would be good to have a meet up.
I do need to get fitter and lose weight although I have to confess I’ve had mega treats over the past few days...it’s usually the way of things pre results.
Sorry it’s been a bit of a long one plus the philosophical side of things but I think that way normally... nothing like a philosophical debate 🤔
hope you all have a good night
hugs to all