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, sadly total hair loss....I was on fec.....100% strength for the first dose then a reduced dose for the rest.....I won't lie to you, I found chemo pretty brutal but doable....a friend of mine sailed through it....so we are all different.....but what I can say is it's now 8 weeks since my last cycle and my hair is already growing! 

Everything crossed you won't need chemo......but....it's not the end of the world if you do....you have no lymph node involvement.....let us know how you get on? Xxxx

I will Marlyn, thank you very much. I’m glad you are over yours now, onwards and upwards :-)

thsnk you xx

Hi, was back today for results of op.... the margins are still not clear so need a 3rd op to clear the DCIS....as what is left is the In Situ they are not rushing for surgery, so I've got a couple of weeks then surgery again as my breast is really sore (and nipple actually).

Talked to consultant about Oncotype DX test and he said this outcome will decide whether I get chemo or not....but they won't progress me to oncology until the surgery part is complete.

He stressed the 'treatment' part is surgery with anything else (radio, chemo & tamoxifen) the follow-up  to reduce chances of recurrance.  This made me feel a bit better as felt surgery bit was like going round a roundabout I can't get off.

My only worry is the in situ cells didn't show up on the MRI, surgeon was also happy tissue looked normal when he removed it....only showed at microscopic level....so thinking Chemotherpy isn't so bad afterall if is kills any wee bits growing that they don't know about.

Don't really know much at all about Chemo and the variations....does anyone know how they decide what, how much to give, length of treatment etc.?

xxx

Hi,

Goodness a 3rd op? To be fair I had my second reexcision today and definitely can say it wasn’t as bad as the lumpectomy and node removal, so wouldn’t be too stressed if there was a third, told there might be.

 I have wondered too if the course was less harsh or shorter in this case, would hope so, maybe someone on here will have info on this. How do u feel about getting the chemo? Stupid question maybe but some people are more accepting of it knowing it’s killing off those bloody cells.

You still have the oncotype type test to go which will hopefully come back that it is not needed, I get my results next week at the review.

Hopefully you can enjoy your reprieve until yr next surgery and try to get back some normality, as hard as it is to think of anything other than this!

Take care, please keep us posted xx

Hi, Best of luck for Oncotype results....please let me know what they say.  I'm getting my head around the possibility of chemo....its the endgame I have in sight and want to make sure I've done everything so I'm not in this position again.  The bit thats really bothering me (think same as yourself), it would mean I need to tell my kids 'something' (5 & 8) and really really don't want to burden them with anything - my oldest is a worrier....so defo won't be mentioning cancer.

Yeah not too bothered about another op....totally agree, much better than 1st one. I was actually home by 2pm in afternoon having cuppa.

It will be mid-July for surgery, so will keep you posted.

Very best of luck, take care xx

Hi Marilyn And  [@een39]‍ ‍ 

Had my review last night and expected  to get results  of the oncotype test but it’s  still not back from US, was so wanting to know what  the treatment plan is but delayed now to next week.

The pathology report for last weeks reexcision wasn’t clear so another op planned next week, he also said if next weeks doesn’t come back clear we would need to consider a mastectomy. This has totally thrown me and struggling to get my head round it. He said it would mean radiotherapy wouldn’t be needed, but chemo still a possibility.

Find we’re struggling more and more to keep all this from the kids, now with another op next week think we will have to tell our eldest only over the weekend although I worry she will do what we all did and go straight to google.

Whatever treatment is decided will start as soon as I’m back from a family holiday booked for 18th July, hoping I can relax and put this to the back of mind while we are away!

Hope you are both keeping well and enjoying this lovely weather!

Take Care xo

Hi LindaAG, Jeez will that be a 3rd op for you too?  Hope you feel o.k. about it....sending you a hug, but this will be o.k. and hopefully that'll get everything this time around.  My consultant told me 15 in 100 require a 2nd op, and 2 or 3 in 100 require a 3rd....so the odds are in our favour this time!!!! 

Did you have an MRI prior to op?  I did and none of these extra cells surrounding it showed up on mine so they thought it was just the tumor.

I've pretty much got my head around a mastectomy (if I go beyond the 3rd op) probably its the wee niggle at the back of my mind that the MRI didn't show up the DCIS that surrounded the tumor, and what if there is more left over beyond what they know about that is getting ready to grow.

Anyway, you have a fantastic holiday, hope any pain is subsiding and put all of this to the back of your mind until your next op.  It's amazing how time helps you heal a bit....a couple of months ago i was a complete wreck, crying all the time, which is really not like me at all...but I'm getting my head around things and determined this will just be a blip and bad memory.

Totally understand the issue with kids though...I'm the same, so worried if I have to tell them, but I'm definitely keeping them in the dark for now as just can't imagine the impact hearing I'm unwell will have on them.  Must be worse with your oldest and the 'google' thing.  I had myself dead and buried after reading half the things.

I'm off on holiday tomorrow, and will definitely be putting this out my mind as much as I can. 

Will keep in touch, I'm back in on the 17th July for 3rd time lucky.

Take Care xxx

Hi een39,

Hope you had a fantastic holiday and were able to put all this to the back of your mind. Were you away somewhere nice?

Had the op yesterday (feeling really sore today where the tissue was removed from but plenty of strong pain killers home with me) found out the oncotype score just before I went to theatre. What a day!

There are 3 different scores on the report,  reoccurrence score is 25, the distant recurrence risk at 9 yrs was 12% but then the absolute chemo benefit with a RS of 11-25 <1% it’s this score he finds contradicts the score explanation at the bottom of the report which says RS 21-25 for less than 50 yr olds is 6.5% for all ages. 26or more for any age is a definite yes to chemo. (I hope this makes some sense! ) the score grades changed recently and he hasn’t seen this before, so he is referring me to the oncologist and said chemo most likely. I’m 49 now so had I been a few yrs older it would’ve been a no. 

If pathologist report next week from yesterday’s op still shows disease he said it would be a mastectomy after chemo, still trying to get my head round it all but at end of day want to do all I can to ensure as best I can this doesn’t come back, so needs must.

Kids were told last weekend, with school holidays etc couldn’t have hid it from them much longer with me being off work so often.. my 16 yr old daughter cried and said she knew something was up as we had been acting strange , she seems to be coping well tho and more affectionate which I’m loving lol. My husband told my son separately,  tears as expected but on the whole they have taken it ok. But an awful conversation to have to have with them.

Are they doing the oncotype test for you too do u know? Hope this has helped a bit re information u will get back. Forgot to mention I haven’t had an MRI no mention of one actually.

Take care 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 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

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