Thankyou Gingerbud, i thought id seen it mentioned here somewhere but was unsure, im seeing my onc again after my ct scan(18th oct) so will discuss then what to do, i have cancerous lumps in my chest wall that were biopsied last december, nothing has been done about them until now because they’re only just starting to cause me pain, so i think it’l prob mean doing biopsy again to check the status!! My onc just wants to get ct results first so we know what we’re dealing with.
My cancer is ‘aggressive’ so its very scary waiting for scans and results… wish they didnt keep us waiting so long!!! I know we’ll be discussing chemo whatever ct scan shows so my heads in a spin, had hoped it would be a long way off before id need chemo again
hi all sorry i havent posted for a while but have been reading posts, i am having trouble with tingling and numbness in right thumb mainly but today my whole arm aching alot my shoulder has ached on and off since mx but this is different so my chemo nurse spoke to my onc when i was there today and he is getting me an mri scan for right side , i am sure this is cancer related but pray i am wrong it is aching to type now so my posts mayt be less but am thinking of you all and wishing you well this is just so crap for us all the speed of this disease is so scary good scans one minute then not so not long after just no real respite except for the lucky few…tina pleasea dont let them drag their feet (i know that you wont)dont let this bugger penetrate breast wall you are doing so well , have a great night for hubbys b/day u both deserve it,sadie i hope the carbo will ease up for you and really kick its backside,tracey am sorry to hear of you becoming triple neg but lots of support on here… love and hugs to everyone on here sorry if not mentioned you all but do read your posts xxxxxx
Big (((hugs))) Rachel, I’m sorry you have these new concerns. Could it be lymphodema? You’ve had lots of rads + a mx so this is surely a big possibility? I also have alot of aches in shoulder and top of arm from time to time, I do wonder if it’s bc, scar tissue, lymphodema or all three. When is your MRI scan? I am going to chase up my appts next wk, it’s been over 4months now since my last chemo. Whilst I’ve had a blast, + I know I’m very lucky to have had a break, I’m keen to press on with treatment now. Been feeling really well aside from chest wall pain, out + about all week. Momentarily forgetting that I’m living on borrowed time…
Anyone heard from lulu? I know she was getting results this week. Hope your ok if ur readin lulabelle xx
love to all
tina xx
thanks tina , will let u know when i get scan , no i dont hear personally from lulu ( hope all is ok with you lulu xxx)dont think its lymphodema in arm no obvious symptoms of that i dont think , swelling etc,when we have ct scans on thorax , abdomen and pelvis am i right in thinking shoulders are not scanned ???xxx
just a wee quickie… so sorry if i dont mention you all by name…
my appt went well on wednesday and apart from feeling ill and puking twice on the way to the hosp everything was pretty good… i had a my seroma drained of 60mls, results showed grade 3 TNBC recurrence in chest nodes as expected, auxillary nodes were all neg… got all the tumour bu very close margins less than 1mm on one side but cant take any more because of where it is.
seeing onc next friday to find out what chemo ill be getting.
was off the radar as i had been taking part in the glasgow BCC fashion show… it was totally fantastic… loved it so much and would recommend it to everyone… hair and make up and fabulous clothes… i felt like a fairy princess… lots of laughter and lots of tears too as its quite an emotional day… wish i could do it all over again.
Glad ur ok lulu + uv had a ball doing the fashion show Sorry the margins weren’t as good as ud hoped but fab news the aux nodes were clear. I’m sure chemo+ rads will ensure nothing is left behind x
rachel I’m not sure whether ct scans cover shoulders. I would imagine they are pretty much covered since the lungs are quite high but can’t be sure. Try not to panic. Could it be the pleural effusion problem- that could poss cause pain in upper back/ shoulder region? Hope u get scan soon to put ur mind at rest x
hope everyone enjoys the weekend - sounds like this is the last bit of nice weather but it is October so we can’t really complain lol! I’ll be glad wen it cools down, house is like a sauna + scared to open windows at night coz of the monster spiders. Hardly slept for days…
Was chuffed to bits yesterday coz got my hair into a teeny ponytail 4the first time Needed tge help of a few clips but was still delighted :))) Got letter off hospital tday, going to see rads onc this weds for his opinion on the chest wall + scarline. He hasn’t seen it for several months and then it was just a few lumps in scarline. Now a huge area is solid tight + painful. I naturally hope it’s Rads damage but know in my heart of hearts it’s not…
Love to all on here
tina xx
glad your nodes clear lulu thats a good result :)its too hot for me today am sweltering but hope you all enjoying it , good luck tina with chest wall i think we all are so clued up on our bodies now we feel everything is bc but i hope its rads damage for you love to all will take everything in my stride till scan results day then will be pooping myself xxxx
FQ - I do hope you are feeling better today! I really felt for you yesterday. (((((Hugs)))))
Tina - I hope your RADS ONC appointment goes well nd you can have a good chat through things.
LuLu - Glad the fashion show was enjoyable - what an experinece! Well done! Good luck for friday! You are very busy!!
Jo (and steve) - Hope your line is sorted and you get your chemo!
Tracey - Just wondering if you know if you have ‘flipped’ yet to TNBC? Keep in touch!
Everyone - Hugs and hope everything is going as well as it can be!
I have just finished my week of first Carboplatin and it floored me! I was feeling very ill and exhausted - not even able to sit up!! So, really not great. However…the thing that kept me going is NO MORE CHEMO FOR TWO WEEKS!! After just finishing 7 months of weekly chemo, this is wonderful. I still do not feel great, but am much better! And hope to have some good ‘quality time’ over the next two weeks. It is my wonderful daughters 16th Birthday today. So, out for a meal tonight (so need to sleep today!!). Really enjoyed giving her her presents and LOVE HER TO PIECES!! I am also concerned about my back /hip (Spinal met 12 months ago - massive surgery). It is hurting much more. I hope it is just ‘chemo wear and tear’ ,but wish it would go away! I will try not to panic, take a deep breath…and smile!!
Love and hugs to you all on this roller coaster that we cant get off!
Good luck Tina with rads onc, on Wednesday, will be interesting to hear how you get on as I have it in chest wall & hope the avastin is doing it’s stuff.
Sadie enjoy your meal, oh to be 16 again and free of all of this rubbish. Sorry to hear you have had a rough week following last Monday but hey 2 weeks off.
I’ve had two weeks off now cos of the line - it was removed last Thursday & Dr Cross is putting the Hickman in this Thursday so bac to chemo on Friday.
Lulu con rats on doing the fashion show that must have taken some doing.
Love to all I have missed but trying to do some jobs whilst feeling relatively well.
Thankyou sadie, I have no idea yet if it has ‘flipped’ not seeing onc again until after my ct scan when he will let me know plan!! I will keep in touch and let you know what happens.
Hope you feel better soon, and enjoy your daughters birthday meal!!
Hi ladies
hope ur all doing ok
sadie sorry uv felt so poo- but 2weeks off now woohoo!! Time to build ur strength up + have some well deserved good days. Happy birthday to ur dear daughter hope u all hav a lovely evening xx
Rachel hope u are feeling a little brighter today. Have u chased up that MRI? Don’t think u will settle til that’s sorted. Good luck xx
laura best of luck for tomorrow, hope the scan results are all GOOD! Xx
hello to everyone else too!
All good here- well feeling good anyway aside from the increasingly painful chest wall. Did a bit more Xmas shopping today (for dan- only buying for immediates this yr). I think we’ll need an extension lol coz I can’t stop + everything i’ve bought is quite big + bulky but wot the heck! I’m out with some bc friends from my clinic for lunch tomorrow+ then a friend tmoro nite. Then the diet commences on weds I’m like a barrel…
Been trying to get tickets to see rihanna on fri night she’s on in Liverpool but tickets going for over £200 for a pair + just can’t justify that. Will prob go our caravan 4the w/e instead. My birthday in a fortnight so need to get planning
lots of love tina xxx
I have just found out about the ‘Honey Rose Foundation’ and wanted to share it with you. They give ‘people over 40 years old, who are suffering with life-threatening illness, a special day or weekend to remember and enjoy’. A bit like ‘Make a Wish’ for +40yr olds!! Some lovely ideas on their web site - tickets to concerts (Tina - Rihanna??), pamper days, sports events etc.
Sadie- sounds like the ‘willow foundation’ who offer something similar for under 40s (I’m 33). We went centreparcs 4the wkend last December. Hope u get the ballon ride sorted
laura thinking of you hope the results are good x
tina xx
Hi Tina - Yes, similar! Nice to see something for 40+ as we still want to have fun!!! I had not registered you were such a baby!! Glad you had a good Centre Parcs weekend!
Fingers crossed for Laura!! XXXXXXXX (very crossed!!)
Thanks for posting that link Sadie. I was too old for the willow foundation last time as i was 40 at diagnosis and didn’t know about it first time around. Hope you can organise your balloon ride it sounds fab.
Tina hope you manage to get your tickets or at least have an enjoyable weekend. Can you maybe contact your local radio station they often get some freebies and if you tell them your situation they night be able to help… maybe worth a try!
I’m still a bit sore post op. Think it’s my seroma again. Still on a bit if a high from the fashion show too xnd trying to put Fridays apt with my Onc out of my mind meantime.
Hi all thanks for your gd luck wishes they worked scan showed stability which I’m pleased about unf can’t have prostrate tab as not right cancer but they sd because cancer is small they will talk to lung doc about op not sure if I want that but will think about it also they sd will put me forward for cyberknife so it all depends on docs at moe gtg back after Xmas for scan so well plsed can enjoy Xmas gd luck Tina for tomorrow be thinking of u take care all big hugs xx
xx