Hello, 

i was grade 2 invasive ductal carcinoma and mucinous, clear margins no lymph node involvement....my onco couldn't rule out rogue cells so wanted me to have a chemotherapy flush.....I just wanted to throw everything at this to help lower the risk of any future reoccurrence.....

good luck with it all, will e interesting to see what your onco advises ....xxxx

Hi,

What does a chemotherapy flush mean, is it an easier treatment to have? How did u get on with it? Any hair loss? This is the part I’m dreading,

Hope you are well, thank you xx

Hi LindaAG,

Had a great holiday, just back at the weekend and in for the 3rd op on Wednesday.  Hope you've recovered well from your surgery.  Starting to feel a bit better now with results next week.

Thanks for explaining your oncotype score, that does seem a bit contradictory - hope the oncologist can clarify this and you know a definite plan soon...I think it's better when you know what's happening.  They haven't sent my tumor away yet for analysis, but the consultant is pushing oncology to do it now so they have info before planning subsequent surgery.

I'm also getting a genetic test done, but this will take months to come back.

Any word on your margins yet? I'm the same, if they aren't clear then its a mastectomy.  Either way the consultant said I'll need another op, as they will need to fill the 'dent' in my breast (can't see it yet but apparently when it's healed that's too much tissue to go unnoticed, they will use fat/tissue from under my arm to move into my breast.

Hope your kids are doing o.k., things always seem to get easier to deal with over time, so hopefully that'll be the case for your's - and will take a bit of pressure off you, trying to make up stories why you are off work.  I've still not told mine yet, they are a bit younger so I can get away with it for now.

Take care and look forward to hearing how you are doing

xxx

Hi, unfortunately I need to have a mastectomy. The 3rd op didn't clear the cancer cells.  Don't know about chemo yet, should have results within next couple of weeks.  Think they will plan surgery for after chemo if I need it.

I've had a genetic test too - hope this is negative!!!

xxx

Hi [@een39]‍ 

Hope you are recovering well from yr recent op, have you had yr results back yet? Hope they are clear this time!

Got my results before hols and he did manage to get 1.5 mm clear even though there was some high grade dcis again. He said between then and my oncologist appointment I needed to think about  the mastectomy but was up to me.

Made the decision to take all I can get to be honest, when on hols read news stories of women back home where it had came back and outlook wasn’t good, was worrying to read so decided to go for both chemo (will try cold cap), then mastectomy oh and nearly forgot the tamoxifen too :-/

Haven’t had the oncologist appt yet so no wheels in motion just yet, the waiting is just awful!

Did they send away any of your tests yet? Hopefully you have a better idea of your treatment plan by now..

Take care, chat soon

Hi [@een39]‍ 

So sorry I totally missed your recent post there..

Sorry to read about your results and the mastectomy, hope yr holding up ok big hugs to you..

Have been reading up on mastectomies this past few weeks and  a lot of women coped really well with it and happy with their reconstruction ( which I definitely want) but I understand initially getting your head around it might take some time. As I said earlier even tho they managed to get clear margins with me think for peace of mind going down this route too for the best, for both of us..

Hope yr ok, chat soon xx

Hi [@LindaAG]‍ 

Oh my goodness - snap!!! We've have very similar stories indeed!

Got my oncotype results back and it was 21, so that's a 6.5% benefit.  If I had scored 20 it would have been a 1.6% benefit or something like that. Amazing how one score makes the difference, but I think I would still be asking for chemo even with score of 20. 

But I'm totally with you, I need to throw everything at this so I have best chance it won't come back....is bad enough once but to face it again would be horrific. 

Things are now moving so fast for me (fine with that), seen oncologist yesterday and start chemo on Thursday (8th).  I'll be having 6 sessions over 18 weeks (FEC), to be reviewed after 4 sessions. The oncologist hasn't ordered the FEC-T which apparently they usually give in last 3 sessions, but nurse thought this was usual so need to ask about that.

Visited the oncology ward and seen the cold cap in action on a lady getting her first treatment.  I'm defo going for cold cap too...its worth a try and then no regrets :) Ward manager says it works on 1 in 4 people, so fingers crossed we are the 1 in 4.

Not sure if I'm doing this right but I've done these things in prep, might be worth thinking about:

 * booked 3 x wig appointments for Tuesday mrn before treatment starts

* hair cut Tuesday afternoon (apparently the cap works better on shorter hair).  I really don't think I'll look good with short hair (mine is thin blonde just below shoulders) but thinking a really short bob maybe

* eyebrows getting tattooed tonight.  I'm really just a mascara person, but my friend gets her eyebrows tattooed and they look really natural and think losing eyebrows and eyelashes will hit me hard, so hoping this will help if it happens

* dentist booked for Monday for checkup

* trying to get podriast appointment as have toe that gets sore every now and again...was hoping for someone to have a look at this before I start just in case of infection

* ordered a night hat for sleeping and a couple of head scarfs - I look horrendous in these BTW, only just realising now my hair has a lot to do with how i feel about myself - got everything crossed the wigs are half decent.  I've also been searching online for wigs, particularly human hair monofillament ones. SOme are so so expensive ££££ but found these websites that i might consider buying from (www.sheswigs.co.uk; www.urhair.co.uk). Might actually post and see if anyone has bought from these websites.

Sorry this is such a long post!! Will keep you posted on how Thursday goes, and got everything crossed you get your treatment plan sorted really soon! One step closer to being cancer free...yay!

take care and talk soon xxx

Hi [@een39]‍ 

Wow, things are moving fast for you, wasn’t sure what the turnaround was between seeing oncologist and starting treatment but so good to get started too.

So impressed how organised you are! Has been a great help to me thanku, have made few appointments over the weekend after reading your post lol (eyebrows and wig, dentist I had for 23rd anyway but probably have to bring it forward ) I’m hoping things will move just as quick for me too.

Happened to call the hospital earlier in week querying if any sign  of an appointment, turns out a letter had been sent which I hadn’t obviously received and it was for the afternoon I had called and was too late! Was gutted as I’d been checking post daily since I got home from hols but anyway these things happen, have new appointment for this Wednesday, will finally get treatment plan, seems ages since diagnosis in May! 

Got haircut yesterday taking it up to shoulder length, wasn’t brave enough to go shorter! Totally agree with hair being a big part of us, definitely the worst part for me too. Need to look into the scarves etc too. Had read nails can become very brittle, you should look into something for them, think it’s cslled Evonail or something.

Good you got to visit cold cap ward, fingers crossed it works for us too, doesn’t sound pleasant tho! Take a scarf or blanket with u and a hot drink, did they tell you how long it has to be worn for?

Re chemo my BC nurse had said I would get standard 6 cycles whatever that may be, hope to avoid the T have read it can be quite tough. Was there any question of them not offering you chemo with a score of 21, I was told most likely at 25 but still not 100% sure, doesn’t feel real still until I know for definite.

Wishing you the very best of luck for yr first cycle on Thursday, hope you are pleasantly surprised and sail through them all, sounds like you are very well prepared! Keep in touch as best you can.,

Thanks again for all the info! Take care xx

Hiya LindaAG,

Aww that's a shame you missed that appointment, but great you've got another so quick!  Thanks for tips, we need all the help we can get, I'll order the nail stuff and take hot drinks etc.  I'm determined I'm going to stick out the cold cap....the oncology ward manager said that I would know pretty much if its going to work after the first session!  He said we need to wear it for 30 mins before, then about 1.5 hours for meds and the a further 1.5 hours after.  I spoke to the lady having the cold cap...she had had her meds and was doing the last 1.5 hours....she said it wasn't too bad and tolerable (so fingers crossed)!!!!

Just had an echo heart scan to get a baseline on how my heart is before treatment, think that's if you have heart trouble during treatment they can compare it and see any damage.

BTW those wig websites I mentioned are scams so don't order from there.  I noticed the exact same pic on a geniune wig store (that i'll be visiting tomorrow).  It was £890 in the store and £140 on urhair.co.uk...anyway I googled a bit more and apparently there is a big wig scam, essentially chinese companies pretending to be in the UK and sending horrendous wigs (joke shop quality).

The oncology ward manager said I was lower risk with a score of 21 (same for you at 25) and said that's probably why I wouldn't be getting the T part of the chemo - but he wasn't completely sure. He actually thought she made a mistake missing it out, so need to ask about that.  But the oncologist and BC nurse were very much 'pushing' for chemo....there was defo no mention of choice, they were very clear that grade 3 is fast growing and whilst they were confident it hadn't spread (small and -ve nodes) this is a step worth taking when under 50 so it doesn't recur.  Which I know is a big fear for us all.

I was thinking the same about these Oncotype scores, at 21 I'm a 6.5% benefit, but if I had score 20 I would have been 1.6% benefit.....I find this different so massive with one point that I would still have wanted to throw everything at it (just as you mentioned, I want to do everything now and never have to deal with it again).

I'll keep you posted on how it goes and will look forward to hearing how you are too!  Let me know when you start your chemo, and sending lots of positive wishes these cold caps do the trick!!

big hugs, xxx

Hi [@een39]‍ 

Just wanted to wish you good luck for tomorrow, hope yr feeling ok , you will sail through it I’m sure!

Had my oncologist appointment today, bit of a curveball, she said since my test score indicated low benefit from chemo she was leaving the decision up to me. Really didn’t expect this!  Also cold capping wasnt available at this hospital ( in Belfast), so disappointed about this. When asked if I didn’t have the chemo but it came back would it be available to me then, she said if it came bk elsewhere (not the breast) they would not be able to fully remove it and chemo would be given to manage it only, not what you want to hear.

So it’s booked for the 27th and like yourself an echo beforehand. FEC-T x6 ( the dreaded T) but then she said there was a chance I could get 4 lesser toxic cycles as some low benefit women in England have been given this, but won’t know until the first day.

My head all over the place now but think I would be selfish/ foolish not to take the chemo. Just didn’t expect this from today.

But anyway good luck for tomorrow, will be good to get the first one out of the way! Please let me know how u get on , best of luck with the cold cap too.. 

Take Care xx 

Hi LindaAG,

So sorry not rreplied and thank you so much for your message!  Such a brave choice you have made, and I know you are doing this to make sure your kids have a mum for a very long time...it's going to be worth it and that's how I'll be getting through it.  Just horrible being in this position, its a normal we definitely don't want.  But you will be fine, and fingers crossed you might get the reduced doses. 

This is a big story...apologies in advance and remember I know someone and have read loads of stories where ladies have just felt a bit yucky for a few days with no sickness at all. 

Thursday went great initially, cold cap was manageable (fine after 10 mins), receiving drugs was fine too.  Had anti-sickness prior to treatment by IV, however around 3-4 hrs later I became really really sick and this continued with less & less of a gap inbetween, so my husband called 24hr helpline and they said i should be seen at local A & E.  They were really thorough as my blood levels inidicated infection (they thought it was in my brain as my head was so sore...yikes) but also said it could be caused by severe sickness, so they gave me anti-biotics just in case.  Anyway I had CT scan in middle of ngt and all was clear, so I was given morphine and anti-sickness, stayed in hospital 2 ngts to stop the sickness and my blood went back to normal. 

Feeling really well now, just a bit tired and like I've had a bad hangover.  Totally dreading the next one, but we just need to push ahead, we can totally do this....6 horrendous hangovers and it'll all be over!

What a bummer about the cold cap....is there any alternative place you can get your treatment where you have the option to have it?  I had 2 options where I could get treatment, one was a bit further away but they didn't mind me going to either.  My scalp is a bit tingly/itchy right now, which doesn't feel good as I think that's what happens before it all comes away, but will keep you posted!

big hugs and stay positive getting on with everything, will keep in touch

xxx

Hi [@een39]‍ 

Great to hear from you and have thinking about you and hoping all was well. What an eventful first cycle, can’t believe how quickly it took for an infection to take hold! Is there a chance the bad headache was maybe caused by the cold cap? Read it can bring on migraines. Brilliant you found it fairly bearable too!

Re the tingly scalp, I didn’t think loss of hair would occur so quickly, supposed to be around day 19 or so hopefully it is just after affects from the cold cap itself, did the nurse give you any info on it?

My oncologist seemed to be a bit dismissive of cold capping so didn’t suggest alternative hospitals unfortunately so have gave up on that idea now which is a shame. But fingers crossed it works well for u, so many success stories out there so stay positive!

I called the hospital yesterday to check if any confirmation on number of cycles planned for me, have been told 4 but not sure what type just yet. Hair now cut up to shoulders, brows done, wig ordered etc (had been dreading going but lady looking after me was brilliant, so funny but also really understood how difficult it was being there too) so I’m feeling more organised now. 

So pleased you are over the first cycle now and feeling much better, hope you can get back to some normality between now and round 2. 

Keep in touch and take care of yourself, will let you know how I get on in 2 wks time.. 

big hugs xx

Hi [@een39]‍ 

Great to hear from you and have thinking about you and hoping all was well. What an eventful first cycle, can’t believe how quickly it took for an infection to take hold! Is there a chance the bad headache was maybe caused by the cold cap? Read it can bring on migraines. Brilliant you found it fairly bearable too!

Re the tingly scalp, I didn’t think loss of hair would occur so quickly, supposed to be around day 19 or so hopefully it is just after affects from the cold cap itself, did the nurse give you any info on it?

My oncologist seemed to be a bit dismissive of cold capping so didn’t suggest alternative hospitals unfortunately so have gave up on that idea now which is a shame. But fingers crossed it works well for u, so many success stories out there so stay positive!

I called the hospital yesterday to check if any confirmation on number of cycles planned for me, have been told 4 but not sure what type just yet. Hair now cut up to shoulders, brows done, wig ordered etc (had been dreading going but lady looking after me was brilliant, so funny but also really understood how difficult it was being there too) so I’m feeling more organised now. 

So pleased you are over the first cycle now and feeling much better, hope you can get back to some normality between now and round 2. 

Keep in touch and take care of yourself, will let you know how I get on in 2 wks time.. 

big hugs xx

Hiya LindaAG,

That's great its 4 cycles, this is going to be over before you know it and then we will have peace of mind we have blasted it and any residual cells!

My hair is still there, so could be paranoid about tingling hahaha - I usually wash my hair everyday as quite oily so maybe that and the dry shampoo is annyoying my scalp.....fingers crossed it just thins.

I think I had a migrane (i get them every couple of months) and you are right maybe brought on from the cold cap or the sickness.  The great news is I'm feeling mostly normal, so if the inbetween bits are like this everytime then that will be manageable.

That's great you've got your eyebrows and wig sorted....this will help so much to feel and look less ill, any bit of control we can get! 

My only complaint at the moment is I can't drink tea...it tastes funny to me now and I used to drink quite a few cups a day!!! Enjoy the next couple of weeks and keep yourself well and strong....take care and speak soon xxx

Hi LindaAG,

Been thinking about you today, hope your first round went well and you are home and feeling well!

Great to get the first one out of the way and one checked off the list. 

I’ve bought travel sickness bands and hospital are giving me a antisickness patch tomorrow before my next one on Thursday....got everything crossed the sickness isn’t as bad and that you are managing it ok!

take care xxx

Hi [@een39]‍ 

Have been wondering how you have been getting on too, how did you find the past few weeks? Did the tiredness ease for you?  And do you think the cold cap is working for you??

Yesterday wasn’t too bad, they struggled to get the line in and needed an ultrasound on the 5th attempt which thankfully worked! But they are referring me for a Picc line for next time as most likely will get more tricky each time. So I’m on AC chemo, A being one of the most powerful I’ve read and nicknamed the Red Devil lol .. They said I was getting plenty of them both, oncooogist said it was less harsh on the heart but just as effective as others. Slept well considering steroids given late in day just had a headache by the time I went to bed. Today just feel tired, bit headachy and groggy, but so far so good. Once steroids finish tomorrow evening might find side effects get a bit worse, so we will see..

Were you bad with sickness? Travel bands a great idea, hope they work well for you. Hope tomorrow is less dramatic for you and you cope well with round two. After tomorrow you are almost half way there! :-)

Take care, big hugs for tomorrow!

linda  xx

Hi Linda,

thats fantastic I’m so pleased for you that it’s went well...PicC line sounds like great idea, no point messing about if a bit tricky first time! Oh man the Red Devil hee hee...but that devil will be sorting out any wee stray cells (if there was any)! Not heard for the AC regimen but there are just so many aren’t there! Is it still only 4 rounds you need with this? Mine is still 6 rounds of FEC80 -the nurse says this is quite a low dose because I’m low risk!  Wish I understood all the regimens and how they come to these decisions etc. Just need to trust as they are the experts.

Got everything crossed for u that your symptoms will be manageable! It really was fine for me, I’ve been a bit more tired than usual but honestly only a couple of days that I actually had to take it easy, apart from that I’ve been pretty good! Some diarrhoea for about a week but not horrendous and bit of joint pain but ibuprofen sorted that! 

my hair has thinned but it’s still there, although it’s horrible greasy as I’ve not been washing it (only once per week) but really just waiting on waking up bald ‍ will you defo lose your hair with the AC regimen?

anyway will keep in touch, so happy you’ve started on this, one less to do necessary but we will be done and dusted on this stage at least by Christmas !

take care xxx

Hiya,

Great things have been fairly easy for you these past few weeks!  And they did say you would know by the first session if the cold cap would work for you so that’s super!. Don’t think you need to fear waking up bald, hopefully they will reassure you tomorrow on this. Read you just need to be careful that the hair is soaking wet all over to avoid patches. Greasy hair in the meantime will be well worth it but know what u mean, hate that feeling too lol.

 For me yes it’s inevitable mine will go, day 14 seems to be D day for it. But good chance I’ll keep eyebrows and lashes though  will be delighted if I do! First head scarve came today, hair piece arrived at the shop but they will cut and colour it anyway I want so think I’m going tomorrow if I’m feeling the same as today, actually out cutting the grass tonight and walked the dog with my son just can’t shake the headache but it’s bearable enough. Just going to take each day at a time..

And yes roll on Christmas for this part to be over :-)

Very best of luck for tomorrow, let me know how you get on when yr feeling up to it, 

Big Hugs xxx

Hi Linda,

I'm new to this site and have been reading your posts. I was diagnosed in March with grade 3 invasive. I had a lumpectomy 2 weeks later at the beginning of April. It hadn't spread to the lymph nodes but because there could be rogue cells my oncologist advised I would need chemo, radiotherapy and endocrine therapy . I started chemo on 20th May, 3 cycles of EC every 21 days and I am now on weekly Paclitaxel (18 weeks in total) so only 3 weekly sessions to go. I tried the cold cap but only lasted 5 minutes when I started with severe migraine so I asked for it to be removed.  I started to lose my hair before my 2nd cycle so my daughter shaved my head. Best decision I made, no more lumps of hair falling out which was distressing. I tolerated EC fairly well but needed to sleep most afternoons and sometimes felt generally unwell. Not felt as good on Paclitaxel, getting severe headaches, bone pain and some days just want to rest on the sofa but on the whole have been far better than I was expecting. My eyebrows and eyelashes are very thin now but my hair is starting to grow back even though I'm still having treatment (a fine white downy covering). I'm 65 , my oncologist is giving me every treatment available to give me the best chance of survival . This year has been a blur but treatment seems to be going quickly and you will get through it too. Roll on next year, hopefully a healthy one!. Good luck with the rest of your treatment. Hope all goes well.  

Denise. X

Hi Denise,

Lovely to hear from you, you have been through quite a journey up to now. So pleased you are on your last few weeks of your Pacilatel especially since it seems to be that bit tougher to endure. 

Early days for me but only getting 4 cycles which I’m happy about.. so far it’s been manageable but now that steroids are done I’m wondering if things will go downhill from here, hopefully not!

Great your hair growing back already and sounds like your brows and lashes holding on there too! I’m hoping mine don’t go will be some consolation since my head hair almost definitely will. I would have loved to have had the opportunity to try the coldcapping but like yourself would have had migraines from time to time so probably will have had to stop too.

Wishing you the very best for your remaining treatment, do keep in touch. Radiotherapy isn’t so bad in comparison, my dad has had it a few times and found it ok, just tiring more than anything.

Take care Denise,

Linda xx

Hiya,

Just checking in to say hi!!! Hope you are still doing well after your 1st chemo and getting out and about with your kids and dog :)  That's amazing you have a wig shop that can colour it to suit...mine didn't have that option, that will make all the difference and hopefully you will feel more like you when you need it.

I survived the 2nd one much better no hospital admission but was still sick (but manageable at home).  I've felt so so tired this time around however, so just taking is very easy and got out the house today for first time which was fab!

Not sure how much longer I'll get away without hair! Tried my wig on this mrn again and it really is much nicer than my hair however so paranoid I'll look like I'm wearing a wig....but don't think i'll go out otherwise so will need to just suck it up!

sending lots of best wishes and look forward to hearing you are well xxxx

Morning!

Glad to hear yr second round was less eventful for you, had been hoping you were doing ok . You mention yr hair, have you lost much, are you still cold capping?

Well things did go downhill for me once the steroids finished! Only way I can describe it is being totally floored! Started to feel really weak and fragile on the Friday had went into town to collect the wig and had to go straight to bed when I got home and didn’t surface until Sunday evening. Wasn’t in pain but the nausea and zero energy and just feeling unwell was awful.  Gradually over the course of the week some energy returned then had a migraine Friday and Saturday, so pleased I’m feeling fairly ok today.

I was supposed to go to hospital on Monday there to have the Picc line inserted but hubby got appointment put bk as I was in no shape to go anywhere on Monday. It’s now planned for morning of second cycle on the 17th. Dreading what next week brings re hair loss, scalp was a bit tingly part of last week but settled again, think this will be the hardest part for me ️

We each have one more cycle then we are half way there! I had read somewhere that the first was the worst re side effects then it gets a bit easier from there but the tiredness can take a long time to recover from. But we will get through it!

Hope you continue to feel well and can get out and about as much as possible, I’ve found it really helps mentally to get out of the house for a while even if we have to have a nap as soon as we are back home lol..

Take care & chat soon xx

Hi ladies, 

Have just come accross this thread. I was diagnosed initially with Grade 2 DIC, hormone positiven HER2 negative in May. The tumour was small at 13mm. No lymph node involvement found after my lympectomy 3 weeks ago but they have found potential cancer cells in the margins so I'm going in for further sugery (margin shave) this Thursday. From the last op they have increased the grade to grade 3 now. And my nurse is almost preparing me for chemo but won't commit; I naively thought I would be able to escape it as there was no lymph node involvement. I am terrified as I have two small children and a husband with CFS. Like you have all mentioned, its the not knowing that is so hard isn't it. I wont know the plan until I get the results of my next surgery, but wondered if anyone had had a similar situation with the tumour being small and if you have escaped chemo? Or am I just kidding myself and the fact it is grade 3 means I will definitely need chemo? Part of me wants it to blast any rogue cells but I am just so scared. Thanks!