mary grace i talked to my bcn on wens she said it was most likly nerve disturbance too but i thought i would ask here i too have pain in back of shoulder but the doc said that was him poking about lol could take a very long time to sort its self out didnt want to hear that tbf the burning feeling is driving me mad pain i can deal with but this is the pits lol
good for you hosptial rang me yesterday but i was out they said they would ring back today but never did was hoping they would get it sorted faster but that just wishfull thinking lol
Hi Maz, I didn't have burning under arm myself although it was very sore but I know they can cause nerve disturbance (I have a pain in the back of my shoulder blade which freaks me out sometimes) and think this might cause burning feelings. Do you have a BCN you can talk to. Mine were very good at discussing things which I wanted to know were usual SEs and not something I should worry about. If so they might help to put your mind at rest x
no Hb, I will be treated at the wrexham maelor generally for the chemo etc, but still under the hosp in edinburgh, to be fair I leaned on them heavily to get a quick start, I reminded them that there was an initial 3 month delay down to them!!!! it seemed to work along with some very genuine tears! xxx
edited to say the delay was most def not in the edinburgh hospital!
crossed post there
j happy you got the gears going i hate the waiting
im having bone scan cos i have pain right down my side and under ribs had it a few months before dx it was 1 of the reason i went to doc in first place dont matter wot im doing pain is there feels like i am being push together (head to toes )i aint even got my appointment at the rsh yet was told that could take upto 4 weeks and that chemo should start 2 weeks after that from start (finding lump) to when/if i start chemo it will have been 4 months so that tells me not to worrie
i take it you will treated at rsh ? if so i may see you there some time
sorry lesley, you from wrexham too I was in glan clwyd yesterday, start chemo there but others will be at the Maelor XXX
thanks lesley ...forgive my asking, not sure of my own name at the moment, but are yu in the shropshire gang??
dont worrie about me hun ill be fine kids hubby family then me is how its always been nothing will change that not even this bc my life is back to how it was before dx now we got the results everyone is more relaxed and im back to doing everything altho i will say i think it did over do it alittle today pushed myself to much but thats me if something has to be done ill do it no matter wot just take painkillers after lol
can i ask has anyone suffered with wot feels like a burning feeling under the arm after a wle ? and its not by the scar but its doing my head in
I had a grade 3, after being told it was a 2 16mm quote small cancer. Was told would have rads then tamx. When I saw m consultant he gave me the sit sandwich, nonode involment, but grade 3 agressive, but quote I will see you in 10 years time.I know lots of ladies on this site know everything aout their cancer, but I have not asked, as I cant change anything about it, its gone, its in the bin, so all I can do now is have the treatment & get better. Its no use wasting time energy & worry about something I cant control. I have to leave all that to my doctors. I am having 6 fec follwed by 15 rads. I have lost my hairr, it started to come out on about day 17 of the first fec, so I cut itt off, this thing will not control me, I will be in control. Losing my hair was awful, but it will come back, I wont die from hair lose, losing a leg or arm would be worse. The se are so indivual, fec 2 was worse than fec , but after aboutt day 10 I have felt back to normal, so make tthe most of when you feel well, & rest when you dont. You will cry & you will smile, take all the help you can, & remember there are lots of us going through thi & we can all help eachother. All the best for your treatment lesley xx
evening all managed to get OH of pc to say goodnight! Maz I'm with you in the bone scan waiting room!! will this waiting ever end??? I start 3xFEC then 3xTAX on monday we had to do a lot of begging to get it started early,( told em they owe me after all the delays to get this far) I too have pain in ribs on the surgey side it does feel like bruising as it isn't sore unless it's touched or pressure put on it ....don't you just hate the wait!!! Have told kids hair will go little opne amused, wee man a bit "worried , will you get a wig please, don't want you balded, I like you with that hair" bless him, my real hair dreadful!! a wig is the silver lining in all this very black clouds, lol, with the impending chemo there's till a long way to go yet but at least it keeps the holiday dream alive, have you come back to earth yet alex, you must be relieved I've been where you are and it is a mixed bag of emotion so you#ll just ahve to keep slipping into our'waiting room to share a joke or two! xxxxx
maz,hun u have so got to slow down!ur daughter and bubba will be fine.u need to take care or u or u will bee no use to them(and the rest of ur family)if baby doesnt turn then a c section it is!sounds like ur so overdoing things.i knowits ur daughter and i would prob be same come my time but this is ur time to look after number one.please take care of urself darling.thinking of u.ok lecture over!worried bout u .alex xxxxx
alex im around just quite not like me i know got so much on my mind i carnt think right worried about my daughter her bloods are low and she got high blood pressure , she is swelling up (face aswell ) only got 4 weeks to go before little man comes well i say she got 4 weeks could be less she having scan friday to see if he has turned round if not she may end up with a c section on top of that she just got her house so we trying to do that up as fast as we can and its a mess (dog run smells better )then kids are home aint really had time to take in wots going on with me i know i have to keep an eye on my arm as its still swolen bcn said i may need a sleeve or something if things dont change and more than anything i hate being back in the waiting room lol waiting for bone scan and waiting to see onc about chemo and rads been told not to worrie about the new lump cos chemo will sort that out if it is anything but they think its just from the op i do drop in everyday to read posts
u muppet j!have a normal afto and tlk later,im kicking my OH later to put nu fence up.goin 2 clean my eldest fishtank out(yes they r his but dont like gettin his hands mucky)i,ve just seen the biggest fish wipe a fin on the glass 2 clear a hole and glare at me accusingly.maz,hope 2 chat 2 u 2nite if u have time hun?gotta go,fish is tapping on glass nowalex xxxx
morning girls!! the deserter here had a mad few days horrendous but with some accomplishment, haven't got time to put out details yet as gotta take wee man, meeting OH at hairdressers for boys to get smartened up, then to hosp for blood tests will be posting around 7pm when I kick OH out to gym for well earned workout!! thanks Tracey for your PM..will explain later....AS FOR ALEX IF I HEAR ONE HINT OF GUILT WITH REGARDS TO US !!!!! WE WILL FIND YOU AND SORT YOU OUT!!!!!! We hope that you will keep sharing those everyday things that have kept us going over these last as many weeks!!! forgive me I intend to read up and catch up later XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX
all my love to you all Jeanette xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Anytime darlin' just glad you are ok and can now be positive and face the future head on xxxxxxxxxxxxxxx
thank u sweetheart xxxxxxxxx
MG and Alex
As someone who has got a slightly less positive diagnosis after WLE/SNB I just want to add that at NO TIME WHATSOEVER has it crossed my mind that its not fair and you guys should feel bad for us others slightly less fortunate. As you said MG you are still going through the hideous "C" disease and all the physical and psychological effects it has on us.
With regard to "the horrible hairloss" and other side effects you should absolutely NOT have to apologise for not going through it but celebrate that fact that have been spared chemo and embrace the future.
GUILT.............FORGET IT NOT REQUIRED!!!!!!!
Lots of love
PS: Guilt not allowed. Getting bc is sh*t, even if it turns out not to be not as bad as it could be, its still sh*t. I do sometimes feel like I should apologise when I read about the horrible hair loss and side effects some people have but we are still going through hell that other people can't imagine so why should we feel guilty that it isn't even worse...
I have been assured that the dark woods are not hairist although TSR did offer to immac my head earlier! x
I was in and out of rads planning in 20 mins. Just lie on a CT scanner where they draw a few pen marks and stick the odd bit of wire on when they measure you up for the real thing. Have to put your arms in stirrup things above your head which may not be great as you've not long had surgery. I think they wait about 6 weeks post surgery. Mine has taken forever as I had to transfer to a different hospital. They put permanent dots (they call them tattoos which freaked me out totally!) which are literally tiny pin marks like blackheads to show them where to do rads but otherwise nothing at all scary xx
sorry CM!have duly slapped own wrists.thanks all.j,sorry u had pants couple of days,hpoe its sorted.sleep well and fill me in tomorrow.MG,if u dont mind me pickin ur brains re.the planning rads app i would be grateful(no rush,not seeing onc til tues)just wanted 2 know what to expect.have a extremely attractive haematoma on snd incision!yuk!just when my bra,s were becoming bearable to wear! alex xxx
Alex, give over. FFS you've got enough crap, you don't need to feel bad because you've got a bit less crap than others! Relieved, absolutely. Guilty? No, sorry, not allowed, Whoop Whoop is all! MG, would you agree?
alex....... so very very happy for you xxxxxxxx crack open the champers. cant jon you after a 2 day battle with onc, start chemo mon, but soooooo HAPPY for you honey, ill fil you in tommorrow enjoy a good nights sleep xxxxxxxx Jeanette xx
alex im really pleased for you all the best hun i dont drink but tonight i might just have one for you lol xxxx
"Congratulations" sweetheart I am sooooooo very very pleased for you that is just the best news.
No chemo you lucky lucky girl that is one less thing to have to face and I could not be more pleased for you.
At last some good news, you deserve it girl well done
Lots and lots of love
thanx CM but i cant help it!
Now if ANYONE thinks they have to feel guilty for not needing chemo DON'T, the happiest people about that bit of news are those who do have to have it.
clear margins fairy safely locked up in a cat carrier in the garage!i,ll be kind 2 her xx
yehhhhhhhhhhhh,, fab news hun xxxx
Fantastic news Alex, so pleased for you!! (you do realise you now have to hang onto that Clear Margins fairy for the next person in line?!) Oops sorry wrong thread...
I am also WLE, rads, tam and just a little way ahead of you, so if there is anything I can help with just say xx
Alex- fab - no chemo! It is indeed the same as a lottery win, enjoy!
Yaaaay!!! Alex I'm sooo thrilled for you, thats great news, if any news regarding bc can be described as great.
Have been thinking about you and wondering how you got on. Now you can move on with your treatment, like me, and start to see a way through!
hi all.got my results earlier.feel like i have won the lottery! clear margins,no node involvement,rads and tam!i am so very lucky and happy!!! NO CHEMO!cant believe it.dont meet onc til tues so dont know grade,status etc yet love to u all and thanks for your msgs of support re today alex.xxxxxxxxxxxxxx
Another positive to take away, if you're TN, then you won't have to go through the side-effects of Tamoxifen, which a lot of ladies have problems with.
Getting a line before first chemo is, I reckon, a very good idea. A lot of people end up having to have a line half way through because their veins have given up the ghost, so I reckon it's better to have it done at the start so you don't end up with a line AND broken down veins. And it means blood tests are a walk in the park, as is the actual administration of the chemo.
Thank you so much for your comments, yes I do have all my nodes so they can use both arms but I must confess I hate those cannula things being put into me and get a bit stressed so maybe they could put something more long term in for me I will discuss it with the Oncologist next week.
I will not have time to be bored as I am currently studying with Open University for a degree in Counselling as I am changing my career from a Paralegal in conveyancing. I am more worried about not being able to study than being bored!!!
You have calmed me immensley as did the comments from Staycalm so thank you both very very much.
Hey ho onwards and upwards and think positive!
Tracy, my experience of FEC (5 down, 1 to go) is similar to SCACOs, although I am quite a bit older than she is. Tiredness and occasional dizzy spells have been the worse SE's for me, along with any aches and pains seeming a lot worse. My hay fever is worse than usual as well. TAX is mainly given when the cancer has definitely spread beyond the breast, as someone has said. The doctors have a computer programme into which they put all sorts of information about the type, grade, stage and size of the cancer, the spread if any, your age and general health, any other health problems you might have and so on. This then calculates which regimen is likely to be best for you, but as SCACO says, sometimes someone has a bad reaction and so is switched to another treatment.
The dose of FEC is based partly on age and health, so one option is a 75% dose over a longer period. Someone should have a look at the veins in your arms. If you have all or most of your lymph nodes so they can use both arms, they may just use a cannula each time, but if you develop vein problems, if you have had all the lymph nodes removed, or if they think your veins won't stand up to the effects of FEC, they will probably suggest some kind of intravenous device. I have PICC line, which is in my upper arm, and some people have a Hickman line, which I think is usually in your chest.
It's not nearly so bad as I feared, but a lot more boring, as I had to go on sick leave back in October and was told to stay on it through chemo. Good luck with yours, and remember if you are sick or worried to phone the number they give you.
This is the bit of comfort I am taking from this whole Triple Negative diagnosis is that it does respond best to chemo. I was so relieved when my Consultant confirmed no node involvement as in my mind the node had done its job and stopped it spreading.
Hi there, one thing you might like to know is that triple neg bcs often respond the best to the chemo. It's not all positives, I know, but thought you might like a smiley plus point. And the no nodes is fantastic, and a massive, massive thing in your favour.
As I have told you before I had 18mm of DCIS but then when had WLE found out that I had 8mm IDC and grade 3 aggressive cells also had clear margins. The surgeon then decided to remove 6 lymph nodes to test just in case the cancer had spread, fortunately it had not.
When I met the oncologist they said at the beginning they thought I would only need Rads and Femara but as the cells were aggressive grade 3 did I want to consider chemo as well, I was 52. I opted for chemo too which gave me a slightly higher percentage of survival rate. Also had 20 Rads so well zapped.
I am now a year on and feeling really good, had my first mammogram since DX and all is fine. Still does not stop you worrying that it will come back.
Hope you can get sorted out soon, and get to enjoy your new grandson.
Hi Honeybee, we all get slightly different combinations of treatment and are different ages and so on so similar conditions are tackled differently.
It does seem belt and braces to treat DCIS with chemo (which is why people are commenting on it and being surprised). I had a form of invasive ductal bc (an IDC called tubular) and DCIS around it and yet I'm not having chemo (just rads and tamoxifen) because it was only an 8mm IDC and not in the nodes. Mind you I'm older than you (47) but they still said they'd have thrown everything at it if need be.
Whether aggressive or not, if it is DCIS rather than IDC that is good news. It means the bc is less developed and that the treatment is clearly going to zap it x
lulu i can only tell you wot they have wrote down and that is its dcis nothing else , it confused me many a times but its aggressive and that along with my age is why im having chemo and then rads
dont no if the fact my lump appeared over night and when i had ultrasound scan it was only 3 cm in all that was including the cyst yet after the wle we find the dcis was 30 mm /3 cm not including the cyst, im no doctor i can only tell you all wot they told me chemo and then rads is to make sure there is no hidden cells left and bone scan is to find out if some how it has spread to bones which i hope is hasnt
just been reading up and there seems to be different types of dcis i dont tend to read up as i know it can mess with your head like dcis is doing to me
it sound like you have invasive cancer not just DCIS you often get both together but they dont give chemo for DCIS... so it will be IDC (invasive ductal carcinoma). DCIS (ductal carcinoma in situ) is pre cancerous changes which hasnt learned how to spread outside the ducts so cannot spread elsewhgere in the body but the IDC has the ability to get into the lymphatic systema nd spread and that will be why you are recommended the chemo.
if you have only DCIS they wouldnt normally do node surgery as it would come back negative as cannot spread.
hope that makes sense.
J i sent you a PM in response to your earlier message but i suspect it may not help much... with regards to the 3+3 or 4+4.... the research shows that 3+3 is all that is needed however some unit want to give extra and do 4+4.... there isnt actually any benefit but in lots of units that is their protocol... there is actually some recent research according to the prof which shows that 4 chemos just as effective as 6 which is just as effective as 8.
you are the patient and you could argue that you are only willing to have it if they give you the number that you want.
chemo is usually given 3 weekly so it is possible that your hols would fall between doses... however you may nor feel very like holidaying.... if it is after your final chemo then that tends to be when your at your poorliest.
also dont understand what he was saying about more nodes... normally they will remove them all even when you have neo adjuvant chemo so they will all be taken out and they can tell which ones had cancer in as they have scarring so not sure what his issues are.
hope all you girls diagnosed today get on ok with treatment.... tracy i also had a grade 3 TNBC that was 2 years ago and doing fine now.
take care girlies
Oh yes, I forgot you were a baby! 🙂
nope it is dcis and yes i was confused but mine isnt pre-cancer the cells have developed but they havent spread so they say they got it early and chemo is just to make sure nothing is left behind also im 41 so im told my age has alot to do with it
Honeybee, is it IDC or DCIS? I didn't think they did chemo for DCIS (ductal carcinoma in situ), as that is often described as "pre-cancer", i.e. cells that haven't yet developed the ability to spread. As chemo is intended to zap any cells that might have spread, it sounds a bit odd... but if it's IDC (invasive ductal carcinoma) then talking about chemo makes sense.
Well done for the clear margins and no nodes, that's great stuff.
As for losing hair, I understood it's the Epirubicin that is the guilty one for stealing your hair. Anything with -rubicin at the end has that effect. You can learn a bit more about the individual drugs and the chemo regimes on the Macmillan website, I found their descriptions pretty helpful. I even looked at wikipedia to find out a bit more, so that might be useful if you're a bit of an anorak.
For those who do end up with chemo, there are loads of sites you can get some great headgear. I think some of the more popular ones are annabandana, suburbanturbans, bandanashop, there are loads out there, so you can take your time and browse to find something you like. I think you can also get a voucher for a wig if you decide to go that way, or someone else I've seen bought a wig attached to a broad hairband and it looks really good on her, I think from wigstoreuk.co.uk or something like that.
hi all well got my results today too infact got them tonight
mines alot like tracy only
dcis grade 3 aggressive clear margins (they got it out in 1 go )
size 30 mm
No node involvement and only 4 node removed
er status negative
pr status negative
her2 status negative
so i too am triple negative which tbf i already knew
also having a bone scan as i have been having alot of pain in left side and bottom of ribs so they want to be sure it not cancer
now im back to waiting (i hate this part ) got to wait for an appointment to see Oncologist(about 4 weeks ) and then chemo should start 2 weeks after that so a long 6 weeks wait
was also given a survial predict tool as they call it
overall survival at 5 and 10 years
5years 70.7% witout chemo with chemo add another 11.3%
10years 60.7 with out chemo with chemo add another 14.2%
im off to bed now been a very long day and i just want to cuddle up to hubby and try and forget the whole thing not slept in 3 days ,
on a good note if it going to take 6 weeks before chemo start ill be fit to be at the birth of my grandson (4.5 weeks left ) so got something good to look forward too also we are going down the genetic testing root too doctor is sorting that out as im the 2nd in family (my mother ) with/had bc and i have 5 daughters so need to know for them
tracy happy is was all bad news for you hun but i know it still hard to get your head around it
j wot hosptial you at ? just thinking if i get in sooner i may see you
alex all the best for tomorrow will be thinking of you
hugs maz xxx
thanks MG It seemed a tad ironical that the problem was the chemo killed the cancer in the nodes (assuming there was any)forgive me for being thick but isn't that the idea??? as you know 4 were taken and two sentinels showed cancer and 1 of the other two had micromets, hence the FEC soory EC ..no F! and TAX, will it be 6 lots or 8 ??? onc said jury's out on benefit's of 8 over 6 any one else had something similar said???? don't want overkill but do want a definite kill!!!! xxxxxx
Think it's to do with the whole pattern of what you've got, e.g. what grade, if it's spread, what sort it is, etc. I'm on 4 x 4 but if it hadn't responded to the first two, I would have been given 2+6 instead (2 FEC, 6 Tax)
more posts crossing thanks stella was wondering why some get 3&3 and others4&4 ??? I'm going crackers??? xxxxx
I think even if nodes are suspicious, by the time you have had chemo anything nasty has usually been zapped so it is pretty hard for them to know for sure whether there was a problem before chemo. Might that be what they meant? x