Breast Cancer Care Forum

Hello everyone, just been reading your woes after reaching the end of chemo.  I remember them well.  I think we are so looking forward to reaching the end of treatment that we expect the side effects to go as quickly as they came, unfortunately we have to be patient.  The baldness, puffy face, no eyelashes look goes with a little time, once the steroids are out of your system that puffy face goes.  I never realised how strange I looked until I look back at photos and see myself, I thought I didn't look any different!   But I am just about 1 year post end of treatment, have a huge head of hair, almost jaw length, full eyelashes and eyebrows.  The energy levels take a while, but build up slowly, your body has taken a big hit...I took up walking, just small to begin with and now do about 3 miles a day quite easily.  I do still suffer with stiff joints but my nurse thinks that the menopause which Tamoxifen has brought on.  Its not unbearable as long as I don't sit for too long.  I swim and do yoga too.   I gained weight over the treatment too, I am still a little overweight but its coming off and I feel much more like the old me.  I found the mental side quite tough once treatment was over but I attended a Hope course from Macmillan with other people who had finished treatment.  Just helps you to deal with the scariness of being back in the real world again. My fingernails took about 6 months to grow out fully and become normal looking, toenails a bit longer but they are all ok now.  I had watery eyes too, they quickly stopped once the eyelashes returned.  I haven't noticed a problem with hearing but my eyesight is worse now - could be just age anyway. Be patient ladies, rest up and allow your bodies to recover slowly.. and take some vitamins or supplements if you can (always check with your ONC team though in case they do not mix with the treatment).. I was advised to take zinc and calcium and glucosamine and choidritin for my joints.  Now started swigging cod liver oil... OMG that is disgusting! Take care Kip x ... View more

Hi MarbleBengal,   I have Teva specified on my prescription and still can't get it, my pharmacy and others have said they cannot get hold of it, so after having 1 month of Genesis I am no on another brand, they said its all in short supply and I have to have what I can... great!   ... View more

Hi Zed,   I had really sore eyes during the last 3 chemos (T)… they watered all the time and made my skin sore.  I think it was the chemo reaction or the lack of eyelashes.. thankfully within a couple of weeks of stopping chemo they eased off again.  Kip x ... View more

Hi,  just wanted to say I'm under 50 too and had mastectomy so only had 15 sessions of rads, I think its all different for everyone... but I certainly don't envy your 40 mile each way trip Avilajo.   But as Shi said, its all doable and you do get to meet the same people every day and that's quite nice as you form a bond.   Unfortunately most of mine where old fellas with prostrate cancer.. but we still had a laugh.     On the eyelashes/eyebrow front... mine fell out last (way after the hair went) and the hair started coming back first but then all of a sudden I was aware I had eyelashes coming and eyebrows.. its weird suddenly they just appear again... within a couple of months after chemo I had a full set again!  Not sure the eyelashes are as long as they once were but they are there and theyre mine!   I'm on Tamoxifen for 10 years too... just done 1 year.. menopause was already in full swing due to chemo so not sure what is causing what.  hot flushes and aches and pains but still living my life and doing everything I want.. just maybe a bit slower... buts it all doable.   Good luck with those of you still in the chemo lounge...not long to go now and then its onto the next step. ... View more

Hi Kath,  there's a lot of us about isn't there!   At least it makes me feel a bit better knowing I'm not alone in all this... not that I'd want you all to be suffering too. I take magnesium and zinc supplements for bone health (they have calcium and Vit D in them too) and also Glucosamine and Chondroitin supplements.  I had to get everything checked by my ONC first though as they could interact with the Tamoxifen.   Fingers crossed you can miss anymore chemo and jump to rads.  I found RADS so much easier after everything else, just a pain having to go to hospital daily but it was painless and I managed to get away with very limited skin problems, just a small 10p sized piece of red skin.  I used Aveeno cream daily (not before rads though) but slathered on afterwards and evening.   I didn't suffer with too much tiredness, well I probably wouldn't have noticed as was already having sleepness hot flushed nights!  Good luck with the walking, I find it helps but somedays I find I get even stiffer afterwards... what is it all about? Kip x ... View more

Yayyyyy Sue... I am excited for you too!   Its amazing what the little things can do for your self esteem isn't it.  I still get a buzz out of washing my hair and now I can blow dry with a brush.. .well its just the bees knees!   I'm constantly showing my OH how I can nearly grab a handful and make a very very small bun (I;m talking very small but its a bun nonetheless).. he isn't impressed at all and says I am obsessed with my hair... he'll never understand but we all do!  Go celebrate that knot in your hair!!  ... View more

Hi,  it doesn't matter how old your boys they are still your children and we'll always worry about them.. My cancer was ductal and at surgery he took the sentinel node and 2 more just because he said they were all very close together and right by his finger tips.  I dont have any problems with the clearance area,  i had my masectomy scar reopened so i just have one continuous scar which stops where my bra ends near my armpit, so you cant see anything under my arm. Only thing is its permanently numb in the armpit and back of arm,  but not a problem. I think the testing you mentioned is called Oncotype testing?  It gives you a figure which determines whether chemo would benefit you or not.  I never had it as i had 3 +nodes so had chemo anyway. Just focus on the op for now.. Easier said than done i know.   A good tip... Get a triangular pillow for propping yourself in bed, and i was also given a heart shaped litte pillow to tuck under the op armpit as it applies a little pressure on the  wound which help the scar flatten but also gives comfort and support to your arm.  You  need a cushion to put under your seatbelt for journey home too. Love Kip  ... View more

Glad you found something suitable.  I have a prosthetic doodah to pad out the remaining side if I feel I need a lift sometimes... !  They are fab. Kip x ... View more

Hello Chris631, omg you sound as though you have written my story!   When I was originally diagnosed I was told the lump looked about 20mm and the nodes looked clear from ultrasound, so probably a lumpectomy and some radiotherapy.   After having an MRI I was told I had some further areas of calcification and that I would need a mastectomy.   I was ok with that as I had kinda wanted the whole thing gone anyway.   At surgery I had the sentinel node biopsy (they took 3 altogether) but like you I was sure it would be clear.  However, after op I was told all three had some small amounts of cancer cells in them and the lump was 55mm!  Total shock doesn't cover it!   I was like you "oh my god this is it".   Its very hard when results change but I have come to learn this is quite normal and until they have "been in" things can and do change.   My team explained that just because its in the nodes it doesn't mean its elsewhere they are just doing their job and catching the cells!   I had the full clearance after I had had chemo, the removed levels 1 and 2 which only had 4 nodes in and all of those were completely clear so that was good news too.   Regarding the mastectomy - are you having reconstruction at all?  I didn't but its not everyone's choice, I went through all the options with my BCN and she showed me photos of various procedures and then I decided to remain flat.  I am completely happy with how I am now, the surgery was quick and not that painful, I was down in theatre at 9am and home again by 3pm on the same day.   I had my node clearance on another date and again, in and out in a few hours.  Your arm is stiff and you have to do exercises to get the movement back but I now have full movement and its all ok.  Have you been offered a CT Scan, Bone scan?  If they do, don't panic (I did) its all standard procedure to check everywhere else and doesn't mean they think it has.   I had chemo and radiotherapy too, so don't be alarmed if they mentioned these as well.  Chemo is the biggest scariest monster you can imagine.. but in reality it was doable, I managed to work everyday from home, still went out and about and only had a few days each cycle (every 3 weeks) in which I felt a bit rough.  So if it comes to that you will be able to do it... there will be ladies on here going through it with you too.  I've made some wonderful friends from my chemo group.   Radiotherapy was pretty straight forward, just a pain going to hospital everyday for a blast for 15 minutes.  Just some slight redness to the area but all gone within a few weeks. For now, just take each step at a time, until you have the full treatment plan and you start on it you will feel scared and panicked.. its so much easier when you have begun and feel like you are doing something about it.  Just remember there are many many many women with lymph node involvement who all make a full recovery...and with large lumps too.   When I voiced my concerns over the size of mine my nurse said "doesn't matter its all gone now".  How old are your children?  How are they with this?   Mine were 13 and 16 when diagnosed and my fear was for them too.   They have coped so well, just been honest but positive with them and not kept any secrets.  Message me anytime you can... remember to ask all the questions you need at your hospital appointments and write any down as I go blank when I get in there. You'll get through this..   Love Kip - Almost 1 year post active treatment and 1 clear mammogram later! xx ... View more

Hi Lucylump,  I had a mastectomy and was driving by about 7 days after, once the drain had gone and I was comfortable with wearing a seatbelt.   After my lymph node clearance I think it was about a week again.  Ooh and also my eyebrows came back really quite quickly after chemo finished too, eyelashes as well.   You'll be surprised... pity the leg hair joined in as well though! Kip x ... View more

hi Flower,  you are doing so well, last Docetaxol coming up.. yayyy.. have a big pat on the back for getting there.  I had 3 x Fec and 3 x Docetaxol during 2018 and T was by far the worst bit I found.  But I got there and the taste buds came back and the side effects faded.  I found my hair started growing during the T part of chemo too, probably during the last bout,  I finished chemo at end of September 2018 and had a complete covering by Christmas and now its thick and curly albeit grey! Hang in there all of you, you are doing brilliantly! Kip x ... View more

Just wanted to say hi Cheza and say that you've had some wonderful advice.. the biggest being staying off Google.. its so hard not to look but as the others have said, its out of date and everyone is different.  I've done my fair share of Googling and worrying particularly over survival rates but as I was told .. to have a percentage of a 10 year survival rate now, means those were diagnosed 10 years ago, so look how much things have changed.  2nd best piece of advice I had - ask questions - write them down if need be.. and don't every feel you shouldn't call your team and ask things.. .if you don't you worry... its their job so they won't mind.   And biggest bit of advice...   STAY ON THE FORUM... we are the best placed people to understand exactly how you feel... I wouldn't have got thought it without the support of this forum and the wonderful people on it. Take care, one step at a time. Kip xx ... View more

Hi,  I'm slightly different to you in that I had a mastectomy (no recon) as mine are little'uns!   I found a good range in Asda (But you can only get them online).. might be worth a look though.   I had some very soft front fastening ones for immediately after surgery (sort of sports bra looking but with hooks and eyes at the front).  I am not sure what size they go up to though but they aren't expensive and they also do swimwear and other bits and bobs too.. although as you will have a fab new pair of boobs you won't need the pockets etc.  Aemona have nice ones but they are very expensive.  Also Marks n Spencer do very soft bralets, although Primark do too. Kip x ... View more

Hello Deb,   the ladies before me have given you lots of great advice.  I was diagnosed in April 2018, had mastectomy, chemo, node clearance and radiotherapy and now on Tamoxifen.   Feeling good, life back to normal, working full time again now, yes I'm stiff and achy and still riding the rollercoaster of emotions but you'll get there.  As soon as you have a pathway for treatment find the appropriate pages in "going through treatment" whether surgery, chemo, rads etc and you will link up a group going through it with you.  Its the best support ever as you can share experiences and fully understand each other. Stay on here and we'll guide you along. Kip x ... View more

Hi Dove,   so sorry you find yourself self here.  I was diagnosed in April 2018 and had a single mastectomy, chemo and rads.  Not it sure if you are having recon?  I didnt.  The op was fine,  very quick, went down to theatre at 9am and was home by 3pm!  Just a dressing over wound and a drain which was ok and came out after 3 days.  Youll get exercises to do and its important you start them as soon as u canto get movement back.  I quickly got the arm movement fully back and healed quickly.  I used a soft front fasteners bra from George rge Asda online firstly.  If u are going flat consuder a Knitted Knocker (look online).. I live mine, so soft and comfy.  I forget i ono and have one, the scar is fading.   But remember to rest up.. Its a big op still.... Take care we'll be hete for you. KIP ... View more

Hi Dorset Lass, sorry you have had to re-enter the BC world again after so long.  I am on Tamoxifen for 10 years, started just under a year ago.  I take mine after my evening meal, I have to take aspirin (for a trial) and a couple of other various vitamins, so I just preferred to split them up a bit and take some morning and some nighttime.  I do get hot flushes during the night, but then I get them in the day too and I also suffer from stiff joints but that could be from chemo or the enforced menopause I am now in.  Also worth noting that different brands of Tamoxifen can cause different side effects, its worth noting what you get and seeing if you can stick to a particular brand for a while. Kip x ... View more

Hi Wonky and anyone else feeling like this..   I finished active treatment in December 2018 but its not the quick bounce back everyone expects is it.  I ache from head to foot, stiff hips, knees, back feet, fingers etc... not sure if its chemo hangover, radiotherapy or Tamoxifen or everything.   Somedays I'm up some I'm down but I'm still here and moving onwards.   Would love one day to feel like the old me.. but perhaps the new me will have to suffice.   A whole nights sleep would be a godsend!   Hot flushes, you name it I have it.  Oh well...there's always books...a great way to switch off for a bit. kip x ... View more

Hi ladies, I got lymphodema in my surgery arm after radiotherapy, I was given some exercises to do and a sleeve to wear.  It is important to try to do the exercises every day, even just a little bit and gentle massage too.  Thankfully, after 3 months my arm was back to normal but I still have to do the exercises every day and wear my sleeve when exercising or doing strenuous stuff, just to ensure it keeps it at bay.   So far its all ok.   Kip x ... View more

Oh yes I agree with Shi,  I used to suck ice lollies during Fec and T chemo, the nurses told me to and the hospital had a supply in the fridge.   It should help prevent the burnt mouth feeling.    I also used to use cooled boiled salt water regularly during the day, especially after eating and a teaspoon of good quality manuka honey everyday and let it sit on your tongue for a bit, that's supposed to have an antiseptic quality too. Kip x ... View more

Hi Jenny,   Seems I spoke to soon.. just been to collect this month's Tamoxifen.... and they can't get hold of Genesis brand now either... said there is a real shortage of Tamoxifen of any type!  So now I have ..Relon Chem... eek.    I hope they are kind to me... its so frustrating all this chopping and changing! ... View more