Aaah, am glad about that for youxx
i was on letro for over 7 years and stopped it only because it was a new drug and they werent sure of long term effects. The cancer came back again!
You may find certain brands are more suited to you, lots of ladies find one which they get on better with..,you need to try the same one for a coupje of months tho.
Please please, if its working and you can tolerate it..dont stop it, several ladies have and the cancer returned. They now know that at least ten years on it is better. And i wish id asked for a scan before stopping it!
best of luck, Moijanxx
Oh Brenda, am sorry! You have a lot on your plate. Try to keep out of the sun...wont be a problem, im sure!
but if I were you, i would get an early appt to see that skin onc...it may be that its not what you think it is...or, if it is they might be able to do some topical treatment or laser...im not an expert in this at all, but once you see him/her, you can begin to deal with it. .....
also I would try to only use 'simple' or 'pure' skin soaps and dreams until you know...just in case the ones you use are stting up a reaction. I really wouldnt leave it.......just in case.
By the way, i have all sorts of things growing on my skin and the onc says they are warty things!
Best of luck with the skin Brenda and with your recovery from your op...are you having chemo or anything!
keep us postedxxx
love and hugs,
Hi Moijan, yes, started dusting and can even do a small amount of ironing. My breast nurse said this was okay. Still getting a small amount of fluid taken off weekly and then in November get my prosthesis. Got another worry now. I have had recurrent basal cell skin cancer on my face and have had two surgically removed. I am now sure I have got another one on my ear. Have a follow up appointment with Dermstology in January but I know I should try and get a sooner appointment. Just had enough with all the breast problems, I just don't feel in the right place to start again with more skin surgery. It must be lovely to live with peace of mind!
Hope you are okay. I promise I will keep in touch.
Lots of love, Brenda xxx
Yes Brenda, how lovely. So pleased.
do keep in touch. You now have lots of positive experience to share with others. I look forward to hearing how things go.
so happy for you - reasing that you do not need the rigors of chemo or radiotherapy!
Hope you are healing well and are not in too much discomfort.
It is always so great to read good outcomes...
Hi everyone, Came back home today. Went to see Consultant for results and much better than I expected. Lymph nodes negative and I do not need chemo or radiotherapy. ER positive and I have been put on Letrozole. I am so relieved. Going back to hospital tomorrow for more fluid to be drained. Thank you so much for your help and support and I will still keep in touch. Hope you are all okay.
Lots of love, Brenda xxxx
Hi Brenda, yes, sorry its sore. Hope theyve given you plenty of pain meds?
its quite common to have a little fluid that needs to be drained, I remember it...it didnt hurt tho when they drained it.
you are doing well, keep us posted.
yes, people often who mean well, can be quite annoyi g. Iused to bandage my arm for the lymphodema, and honestly i couldnt go anywhere without smeone asking me' what have you done to your arm' ? Or 'do you mind if I just ask...? It was annoying because, i thought it was like walking up to a wheelchair userand askng, whatever did you do to end up in that? Quite rude and altho like you, I dont hide the cancer,, i dont always want to be discussing it, or answeri g questions! Especially with an audience!
the Cat is my (deceased ) puss, she was a maincoon and i got her about a year before i was diagnosed. She used to talk tome and id find her curled round my bald head in the morning she mothered me and i loved her so much!
sadly she eventually had to be put down. Dues to kidney. Problems..as a. Ex nursei tried to keep her well by i injecting subcut fluid into her neck and she had a couple of good recovery years but evetually even transfusions by the vet wouldn jump start her motivation for living and i had to let her go.
cats are rather special...i am so glad you have one Sue.
i pray that you get more up days this week than down.
love the cat avatar - I love cats and my boy Leo has been a rock through all of this. Thank you for your kind words.
Some days are easier than others. I had quite a downer, when I finished my chemo regime. I suppose, being on my own - no one was there with flowers or cards or a hug. The rythm, which I had become accustomed to was no longer there. I had to face the real world again, every day, rather than withdrawing from it for 11 days at a time - the real world, which presumes you are healthy again, as you would be after having a broken leg or such. Whilst, obviously - we are not.
It is so nice to see the hair growing again - and, having been on FEC throughout - my nails are longer than they have been for years! The hair is a soft as baby's hair - and not sure what colour it will be, lol. But there is a lot more white, than there was before - the more white I have, the happier I shall be - can then add some funky colours!
Yesterday a man stopped me in the supermarket with the words "Are you a warrior" - I was a bit perplexed, lol. He then explained he lost his wife many years ago to breast cancer. I gently explained that I certainly did not see myself as a 'warrior' just as someone, who gets on with life and does not hide the fact, that I have and am going through treatment for cancer. I do not wear my wig or a scarf - I find it too tedious - I only do so, when I see new customers or have to go to a business related networking event.
Huge HUG back to you!
have given YOU a hug. We are carried along by the momentum sometimes arent we? I think that it really helps everyone, to know that we can help others by sharing our experiences, but often we feel we have to be strong to do that...when as you rightly say, we are no different from anyone else. i felt quite depressed at the end of my last cycle...am sure it was the Eribulin, and thats why I postponed my port insertion.
i had to park all my fears about the port insertion and get some distractions...like going out with my nephew and his family for the day, im feeling fine again now and also have had good news today from the onc re blood results.
Someone said on another board ' you all, seem so positive' when I feel scared stiff'. So its good people can see we are human too! Thank you for sharingxxx
Hi Brenda, well done! And have a good couple of days out to eat!
What you are describing is absolutely normal...some people cope by blocking it from their mind, others, by revisiting it( most of us tend to do that as the unconcious brain wants to protect us...a funny way of doing it, but there you are!) blocking it out is also unhealthy,
sometimes, it helps to just sit down and 'be' with the fear, the thing about anxiety is that it cant be sustained .."after a while it drops, if we can just be with it at specific times, and outside those times, say' no, ill really worry about this at 4 oclock or 11am, or whenever for 15 minutes', that gives the brain some limits, over time it can be tamed......
Brenda, a bit like Sue, I had a tremendously stressful time when I knew I needed this chemo. My dad died in May after 6 months of stress looking after him. I really dreaded the chemo, my first time, I was sobbing and couldnt catch my breath; like you, Id pinned my fear around one particular thing....losing my hair!
Anyway, i made a big spectacle of myself in front of the lovely nurses...and I thought...Ive let myself down( I used to be a nurse) i shold be coping better with this...ive been here before......
You see how we can beat ourselves up? Anyway, now the chemo is doing its job, also the filigrastim. I have very little hair but its less important...the chemo is working!
I also remember how scared i was just before my op, when I was where you are...worried about the op itself, worried about all manner of things...I had good friends around me, I didnt know about this site....so no help there. You will be fine....and you are normal!
please come back and keep us posted.....
love and hugs,MoijanXX
No - we are not stronger and braver than you - we are all like you, in some way or another.
Some of us have family around us, which take our mind off things - even if it may only be for a short while. We all have different coping mechanisms.
You are not a moaner! - You are simply struggling, the same as most of us do. It is so good that you have this forum as an outlet and can ask questions, etc. and gain the support you need.
The way you are feeling is so normal, although it might be an idea to talk to your breast care nurse, whether any couselling may be available for you. Things are likely to get a little calmer for you, once you have a better idea, what your diagnosis and/or treatment plan is.
When I was first diagnosed, I went into overdrive, trying to see what I had to face and to prepare for all possibilities. I had no time to think or get scared, as I had just started a new job after a long period of unemployment. My biggest concern was how to fit, whatever was going to to happen, around me being able to work and to support myself. There was simply no option, I could not afford to lose my job. And yes, I worked my way through it, but it was more than difficult. Especially as things became and are becoming more challenging over time for me.
I paid the price for that over the last weekend. I had a breakdown - thankfully recovering from it now, but it is taking its time. Emotionally I am still very wobbly.
You are doing the emotional bit up front - which is likely to stand you in good stead, as you move through your operation and whatever may be to follow.
It is good to read, that you will have some distractions over the next few days. It will help a little to take your mind into a different place.
Hi Moijan, Had a better sleep last night. Got to battle the housework today - got no motivation at the moment. The worry has got me feeling very tired and weary. I am going out for lunch tomorrow and Friday. You all must think I am a real moaner but I worry for England and this is just too much.
I am so grateful for the friendship from you all.
Hope you are all doing okay - you are much stronger and braver than me.
Lots of love, Brenda xxx
how are you feeling now? Hopefully you have been able to get some time out?
things should feel much more settled after your op. There will be a short break before any chemo...if its needed. ...so you will have time to relax and prepare yourself. I usually find the fear eorse than the reality.
regarding chemo, there is recent evidence to show that people who are told to expect side effects are more likely to get thrm, than those who werent. My onc has been telling me that I would likely find mine quite easy to handle...and in fact though I didnt believe him at first....actually, it has been ok!.
so try to wait and see for yourself, if you can....just how things pan out for you. You have been coping really well so far.
love and hugs, Moijanx
This is a question you may wish to ask on the September 2016 Chemotherapy starters thread - it might be helpful for others at the same stage as you - to know how you are feeling.
I do not know which regime you are on - so I am presuming FEC at the moment, as a lot start off wit this.
In general terms you should start to feel better again post day 10 after your chemo, but there is no guarantee. Some struggle all the way through, but it is unusual. Glad to hear they have given you different anti sickness drugs. Fingers crossed they do the job.
The first cycle is a pretty good indication of what you can expect throughout your chemo regime. Unless that is, of course, if you change half way through to another regime. Tiredness (fatigue) is likely to be cumulative, which means you may feel a little bit more tired after each cycle.
Chemo and its effects is not like an illness, where you wake up one day and all is gone and you are healthy again. The same goes for the fatigue, if one suffers from it, cannot be dealt with by having a good sleep.
Chemo is challenging for our bodies - our bodies take over, leting us know they need rest and care.
Brenda, you are very welcome. Please dont think you are any different to us! You are coping very well.
i am just like everyone else, I have the same struggles...If the monkeys start to jump, sometimes
I try to park the worries, by setting a contract with myself about specific times I can worry as much as i like...often when the time arrives, im not feeling worried.
afterwards you will be offered a support group and/or counselling, I would accept something like this...it really helps, I have had counselling, they are specialists n this field. If by any chance your hospital hasnt the service, or has a long waiting list, your gp can get you some which is free on the nhs.
anyway, whatever your choice, you are going through the same as the rest of us have bern and you will cope.
and the fear is always worse than the reality...remember thatxx
Thank you everyone for calming me down. I got this into my head last night and had very little sleep. I know I am getting more anxious as my operation is next week. I cannot thank you enough for all your support and I will keep you all updated.
Hope you are all doing okay.
Lots and lots ol love and hugs from Brenda xxxxx
re the injection after chemo...
if its the one ive bern having, I dont get any bone pain at all. Honestly.
i was warned i might, i think often there is some, but i dont think its expected to be excruciating...anyway. It is a personal choice about wether to have it or not. I am having Filigrastim, it is a version of Gcsf. And I have mine for three consecutive days after each chemo.
i feel very fortunate to be having mine, as it has improved my life a lot. i have more energy and feel less concerned about catching infections because my white cells are better than they were before I started!
the injections go into the tummy and dont huert..I give my own and keep it in the fridge at home. They are apprently quite expensive( we dont pay) so I do feel grateful.
best of luck with everything Brenda. Lots of love.....and do feedback if you have any more worries, you are doing very well
I wish you all the best for your surgery - you might be surprised how much better it may be than you anticipate. Looking forward to your updates!
Your pathology results will take usually about 2 weeks to come back - so rest and recuperate in that time.
Once they are back and you see your oncologist a treatment plan will be worked out with you, specific to your diagnosis and you.
Should you have to have chemo - the injection you are talking about is a G csf injection - which is often given as a course over a few days. It is not given as standard in many areas, your oncologist,when discussing your treatment plan, can advise you, whether they will be prescribed or not. Many get through chemo without them, but it does depend on your health status, age and surroundings.
As it is an injection, which stimulates blood cell growth - it can happen that you feel bone pain in your pelvic or shoulder area. However, this is a side effect that not many have reported. If it does happen it can be managed with paracetomol.
I have had these injections (1 x for 8 days post day 4 of treatment) and have not experienced any bone pain as a side effect.
I hope this settles your mind a little.
Hope you are okay. Time for my surgery is getting near. I am sure I will need chemo and something else is now worrying me. I have heard that you get an injection about 24 hours after the chemo to boost your white cells. I have read that this causes excruciating bone pain afterwards. Have you had this injection or heard of it? I know I am crossing my bridges before I come to them but I am just trying to settle my mind.
Sorry to keep bothering you but your help and support is much appreciated.
Lots of love, Brenda xxx
sory for late reply. Yes this is completely normal. You have had a lot of shocks in quick succession and had to make choices ( like we all do) on trust that they are the right things to do.
the physio will be round the next day, to help you to mobilise yourself as the staff will want you to sit out of bed that day. Dont worry, there will likely be some drains, but these will be in a pretty bag, so that you can move around
you will also have pain Meds...do ask for them as and when you need them.
As for phoning and texting, you might feel able to do that..the staff will lock up your valuables, but you should get them back when you are feeling better, so you can ask.
The other thing is, you might have one of those over-the-bed units, containing phone, telly etc...prob paying through the nose, but you may decide to use that for a day or two..I watched the telly and phoned my relatives in Oz when my uk ones were asleep! I think you bought a prepaid card from a machine and topped this up...but they are all different.i
you will be feeling anxious, very normal, but afterwards you will feel much more settled. Its the unknown that gets us anxiousxx
nice to hear from you,
keep us updated as to how you go
love and hugs
Hi Moijan, Just to let you know that I go for my pre-op assessment on Tuesday 13th. Mentally I am up and down. The anxiety is making me feel very tired and I have no motivation. Is this normal? Operation the following week. I have been told that it is very difficult to lie in bed and to get in and out of bed following bilateral mastectomy. I hope I can manage as I cannot be ringing friends and neighbours during the night. I will keep in touch. Hope you are okay.
Love, Brenda xx
Hi Brenda, things will soon start to feel more settled.
This early decision making and prep time is often the worst time, once the ball starts rolling, its easier to go with the flow, but keep chatting...you are not alonexxx
Thank you Moijan. You have calmed me down and I feel much better, I cannot thank you enough.
Lots and lots of love, Brenda xxx
Just to mention that I do everything I could do in 2001, still.
In fact I ring church bells several times a week, which I never did before my diagnosis.
so sorry you have that worry. I had 12 out of 13 positive on one arm and that was in 2001. I recall scouring the breast cancer forum sites,( there were three at the time I found) and asking how many people had survived very long in a similar situation. Lots of people came back and reported they had! You mentioned being alone in the dark, yes thats often the worst time, .........
i cant take away this worry, but if any of them are positive.........the treatment you are given will target these as well as any possible lingering cancer cells elsewhere.
Regarding lymphoedema, I have had lots of help with that, should you be unlucky...and theres no certainty that you will......hold onto that thought...................there are therapists out there who can help you. There is also an association called the Lymphoedema Support network, who are right there on the case.
however....'.Lymphoedema' is maybe one thought.................just too far ahead. Having been warned about it...try to put that 'book' back on the shelf....till its needed....if at all. Not everyone gets it...we only hear about those that do! Take each day as it comes.
thats the brain again...I find that once something is mentioned, the brain immediately goes to 'that' and the 'monkeys start jumping ' over that new possibility. Happens to us all........its not easy....we have to try and find ways to control it. But we can, once we realise whats happening....its like a young puppy which needs to be trained!
If you need to, do go back and chat to the nurse specialist, or call the bcc helpline, ive done both several times before and it always helps.
Hi Moijan, My main worry is if the lymph nodes are positive. Yes, also concerned about lymphoedema. In time will I still be able to do what I do now? When you live alone you have just to get on with it, cutting the grass, ironing, hoovering etc. I know I am looking too far ahead but that is my nature. I am still happy about the double mastectomy as I know after that I will not have more mammograms etc. to get anxiou about. Thank you for being so patient, I really do appreciate the support I am getting from you all.
Lots of love, Brenda xxx
Brenda, what is worrying you about the lymph nodes? Is it worry that they may be positive? Or are you worried about lymphoedema? If they are positive, then any treatment you have( if chemo or an oestrogen blocker if o pos) would also tackle that.
Dont be surprised if the 'monkeys start jumping' again, now that youve made your decision, whatever way you chose, you would find yourself having some worries....the brain does that to us...its thought that the brain behaves in a protective msnner by trotting out all the things that might ever/ or not happen, what we struggle with is trying to divert our thoughts away from the worry...very tough to do.
Have you tried to mentally put the issue in a sack and flush it down the loo? Or to try a glass* of your favorite tipple....just one.
the other thing is, if you find you have persistent worries, make an urgent appt to see the cons again, or at least the nurse spec. Gps are often less good at this situ, because they arent hands on in oncology....just remember, you always have the right to ask for more info.........or even to change your mind, they are used to it, believe me.
hope you get a good nights sleep( I actually typed slerp!-*). I try loads of deep breaths whilst reciting something in my mind...that helps blot the monkeys out!
Thank you Moijan. I felt a bit more settled when I came back from the hospital but I am feeling a bit shaky now - when it is dark and you are sitting on your own. I know I have made the right choice as I cannot live in any more dread of mammography appointments every year and living in fear of the result and the possibility of all this happening again. It is the lymph node situation that is in the forefront of my mind now. I will just have to try and keep myself busy until the operation and try to control my anxiety, but it is not easy with my worrying temperament. I shall keep in touch with you all and let you know what happens next.
Lots of love, Brenda xxx
I have had quite a few chemos now and .....I can really understand your fears about it...
Once youve had your first session tho, - that is if you do decide to have chemo (together with your surgeon/oncologist) I think you will feel much less frightened. The team will try their best to minimise possible side effects as they will want to support you to tolerate it and continue with it.
I find the chemo suite a very friendly place, you wont be alone and the nurses are very supportive. I have made a few friends there along the way. As Sue said, you will need to be aware of how to prevent lymphoedema. But try and take each day as it comes.....if you can, there is a lot to take in. You might find a short break away, before the op will help you to have some time out if that is possible.
I found I was a bit overwhelmed by everything rather like you are, even when I started this currect chemo, and I needed to take time to catch up with myself, and take some control back..if that makes sense....I sense you have already begun to do that, you have made an excellent start.xx
If you do need chemo, they will also discuss 'lines' and 'port o caths' with you, I have an appointment with our nurse specialist tomorrow afternoon to discuss the options and I have been putting it off for a while so that I could get my head around it.
You may be having a similar meeting yourself. I have written all my questions on my ipad, so that I dont forget any of them! I do that now when seeing any doctor....just in case. I just hand it over and they answer all my queries.
Hopefully at your hospital, they will also offer you a group session with the physiotherapists...who will go over all the things you will need to know and offer tips on excercise and how to look after your hands and arms. In fact mine came to see me on the ward soon after my op, to help me. And as Sue says, this forum is a mine of good info.
let us know how things are going, when you feel like it
Hi again Brenda,
I certainly understand your sentiment - it will be good to put your mind at rest with some things.
Please do not fear chemo, should you need to go down that route - treatments are now so much better and easier than even 5 years ago. The NHS has come such a long way.
It you let us know, whether you need to go down that route - we shall highlight to you the relevant monthly chemo starters thread. There will be information of how to prepare for it and how to deal with specific issues, which may crop up. These threads are so great, as so much information is shared of people going through their relevant treatments at the same time.
My thoughts are with you - rest, recover from today - all will be well in time.
Hi Sue, Many thanks for your reply. I had a long chat with the surgeon. I had two DCIS lesions removed from both breast in 1991 and 1997 and now all this. I want an end to it with no more mammograms to cause me more anxiety every year initially. The surgeon thought that in my situation it was best. Apparently the ultrasound did not show node involvement but he said the sentinel biopsy would cause less damage. I still feel frightened but I think this is going to be best for me in dealing with future anxiety. I have been given a sheet of post-operative exercises. I know chemo may be the next step after this and this terrifies me. I am so pleased I have found this site and thank you for all your support.
Lots of love, Brenda xxx
thank you for the update. It sounds as if the right decision has been made.
What are your thoughts about it all? Some people may struggle with such a step.
Has the risk of lymphedema been discussed with you? If not let us know, so we can help you to understand better, particularly as, if I understand correctly, the sentinel node biospy will be done on both sides?
Should you require further treatment, post your operation - a Hickman line or Portacath is likely to be installed to make things easier for you, as a PICC line is not a good idea, if nodes have been removed from both sides.
However this is very much the next step, once you have had your final diagnosis and follow on treatment decisions will be made.
Hoping you will recover well. Tiredness may be a challenge - this would be completely normal, as your body will be working overtime to heal your wounds.
Have they given you the relevant excercise sheet - so you can ensure that both of your arms will function to full stretch?
If not - here is a link - https://www.breastcancercare.org.uk/information-support/publication/exercises-after-breast-cancer-su...
Enjoy your time before your surgery - the weather is so good at the moment - well, down south anyway.
Rest, build up your strength and enjoy the little things.
Well done Brenda, good choice for you.
please keep in touch with us.we are all here for you.
.you will likely have more queries as time progresses. If you would like to hear more about how I used projects and personal goals, to keep coping with my own cancer journey, just let me know, either on here or by personal message.
Lots of love and huggy thoughts.
Dear all, Just got back from the hospital. Surgeon recommends a double mastectomy with sentinal lymph node biopsy on both sides. Going into hospital on the 22nd. He was very nice and I feel a bit more settled now I know what is going to happen. I will still keep in touch with you all as I feel I have made some lovely new friends and I know I have got more to face.
Thank you for all your good wishes.
Lots and lots of love, Brenda xxxxx
Hope all goes well with the surgeon Brenda.
And to everyone, thanks for the understanding and support, it is very much appreciated.