I'd also urge anyone to do the exercises for as long as they feel they can.
I had breast cancer 5 years ago and had 3 lumpectomies and radiotherapy. By the time I went for my planning session for that, my arm movement was severely restricted and it was impossible to lift my arm into position away from the rays - even helping it with my other arm was terribly painful and keeping it in position for the length of time the planning session lasted was just awful. Each of the 15 sessions that followed were equally painful, but as it was for such a short period of time, it could be more easily coped with.
Time went on and I began to be accustomed to having an arm which didn't work properly and hurt a lot. A year after my third op, I was referred to a special oncology physio, following 2 sets of normal NHS physio which were no use to me at all. This oncology physio was so wonderful from the very first session, you wouldn't believe that the very light stroking the physio did could make such a difference, plus of course the hope that came from it that it would improve - my physiotherapist said so!
Fast forward to this year; breast cancer in my 'good' breast, mastectomy and did exercises religiously - once I could do more than the first few, which took some time. I was referred for NHS oncology physio by one of the bc nurses as she thought I might have cording and was seen within days. The physio said I didn't have cording, but she was concerned that I didn't have the full range of movement in my arm. It's already much improved after 2 sessions, and I'm so glad it was picked up so early.
The physiotherapist I have is also very keen on lymphodema prevention, such as immediate care for thorn pricks etc, having worked with people who have developed it and knowing how debilitating and painful it can be. I had my letter yesterday for a group meeting with one of the bc nurses and a lymphodema specialist physiotherpist next week, and am extremely content that there is this pro-active approach, so very different to last time.
Even if it gets a bit boring, do try to keep up the exercises - it can only do you good.
Jane-t, the advice I have had from anyone who has been through this, or has been close to someone who has, is DO THE EXERCISES!
As Sisterjayne said, in the shorter term, it is to get good mobility in your shoulder and help with the lymph drainage, but it is also important for long term lymphoedema prevention. Different Breast Units make slightly different recommendations, but mine gave me 2 weeks of basic exercises, at least 6 weeks of a set of 7 exercises 5x a day, and the same set of 7 exercises 1x day for life. The exercises don't take long, and if doing them prevents the problems of lymphoedema (arm swelling up with fluid that doesn't drain properly) it's worth a few minutes a day, isn't it?
Does anybody know what these exersices they give us to do post op are for??? are they to get the mobility back in you arm?? if soo how long do you need to carry on doin them?? or do they have anythin to do with gettin other lymph nodes working once ya had lymph node clearance?? an do they help with the numbness in arm and shoulder?? i just dont know how long i have to keep doin them for?? i do have good range movement in my arm still a bit sore an can feel a bit of stretchin in arm but still doin them, not as much as i should be though xx
I went shoppin for wigs yesterday and was really surprised how well i coped even my friend said afterwards that she was kind of dreading it as she thought i would be emotional. I have really surprised myself at the way i have coped and managed but i think us women find the strengh of within us. I seen oncologist today and start chemo next wednesday on what would have been my dads 66th birthday, he passed away to throat cancer 4 years this september. Im really begining to believe that my parents are with me every step of this horrendous journey and that it was them that sent the pain to me when i found the lump as only for the horrendous pain i had that woke me at 4am in the morning i would never have found the lump as i no i should but i did never check my breast. The wigs were fantastic and cant wait to get it and then i think i am goin to shave my hair off before it falls out. I feel if i shave it off before it falls out means i take back control, and then i dont think it will be as daunting weeing big clumps of hair coming out as my hair is quite long. Dont know when im goin to shave it off yet but i definately think i will shave it. Im quite reassured after reading some of these feeds that im goin to be ok as a lot of you guys seem to be ok goin through the chemo i no the drugs have changed a lot and im now confident that it wont be as bad as i had first thought and i cant thank you huys enough. much love x
Hugs to everybody waiting and worrying.
Sisterjayne... I'm up and down like a yoyo too. I was fine at clinic appointment when they told me I may need chemo, had a couple of real meltdown days afterwards, was completely calm at my oncologist when she told me that she strongly recommended chemo.... and now I'm in a state of denial I think. I keep looking at my long hair and knowing it's on borrowed time.... a bit like I used to look at my left breast and think the same. I still can't believe that in a few short weeks I'm going to be bald! Do you think that we ever really come to terms with our diagnosis... or do we just continue to submit ourselves to it in this completely surreal, dreamlike haze.... where reality makes the occasional breakthrough and causes another meltdown?
PaulS.... I had the ANC at the same time as MX and reconstruction. Initially it was the most disabling part but 3 weeks down the line, movement is getting much better. I was told not to lift my arm above 90 degrees for the first 6 weeks and given a series of limited exercises to do. These exercises are now a piece of cake and a greater part of the discomfort when doing them is linked to my LD flap reconstruction rather than the ANC itself. The nerves, however, are starting to come back to life and causing a certain amount of shooting pains. I find this quite reassuring... at least it means the numbness is subsiding! (currently, due to the ANC and LD flap I am numb from my spine, right across the left hand side, from my shoulderblade down to my waist, right down my left side and just around the front and down to my elbow on my left arm.) Be prepared for your arm to feel like it has severe sunburn and bruising as it starts to come back to life.
Sandie... it's very reassuring to hear you sounding a bit more positive and that chemo hasn't floored you. Hoping to deal with it as well as you seem to be.... go girl! No Haven anywhere near me but they do offer Rekii and aromatherapy at my local hospital. Think I make make use of these services.
Nel and Jane-t.... hope everything goes well for you. Keep strong!
Hugs to all. xxx
I am so very pleased to hear that it went OK and that the radiotherapy was not nearly as bad as you were probably expecting. My heart sinks whenever I walk back into the hospital, so I completely understand how you felt. Like most people, I have had my share of long periods either visiting my parents, or friends, or being ill myself, and so I dislike hospitals. Strangely though I watch Casualty and Holby City which my husband simply cannot understand! Just get your calendar and cross the days off! It will pass quickly! Book a treat for the end of the treatment - I met my friend at the hospital after her last radiotherapy session (she'd had surgery and chemo as well) and drove her to a pricey spa hotel that I had booked for us for the weekend. We had a great time! And when we both opened our cases we realised we had both had taken a bottle of champagne to celebrate!
I know you are right about this next surgery - and I was very worried about them taking al the nodes away. I think the word 'clearance' suggests that they will all have to go! I didn't realise they could tell during the surgery which ones to take and which are not cancerous! Shows how very ignorant I am. Good to hear about your mum and your sister - and great that they are 10 years on and doing well. I'll get through this, will do the exercises and will face whatever is to come to get rid of the cancer. I spoke with my boss today and she was just lovely! I haven't told folks at work but felt I had to let her know that I might need chemo and therefore time off. She'll need to know as she is responsible for staffing and some of my work will have to be done by someone else if I am off for any length of time at all. I think I might have to stop reading things - I frightened myself over the weekend when I read that someone who like me had been told stage 1, then found it was in the nodes, and that this automatically made her stage 3. But this is not what it says in the leaflet the hospital gave me.
So, phase two of boosting my immune system. Drinking my green tea as I type, have bought the ginseng and will go to Holland and Barrett at the weekend to get the other things. And have got all the foods - though was already eating most of them! The Patrick Qiliian book Nutrition and Cancer certainly makes for very interesting reading! Roll on Monday evening when I will be cancer free!
Do take care, and rest well in the evenings. Let us know how things are going.
Warmest regards to everyone - and good luck with whatever you are dealing with this week. P xx
I too is struggling to come to terms with having to have the chemo i really thought i had prepared myself for it but now i know for definate that i need it it feels like i have been kicked in the guts. I no its a means to an end but its so hard to deal with. as my consultant said to me she knows its hard to deal with beacuse its part of your identity as a female if you ask a child to draw a woman the first thing they do is draw big hair 😞 i no it will grow back an its goin to be best for the long term. I think because im still in pain and discomfort from my surgery isnt helping either. It feels like im walking round with a small football tucked under my arm. It has been the removal of the lymph nodes that have give me the most trouble and my nurse said that most woman say this.
Here's the link to the new way of delivering radiotherapy. Too late for many of us, I suspect, and not yet in Scotland, but exciting nevertheless.
Mel66 - sorry to hear that you need chemo. Its something that no one wants to go through. I was told at the point of diagnosis that I would probably need chemo due to my age and being grade 3. Was horrified at the thought of it as my images of chemo is being bald, skinny and throwing up everywhere. I have had 2 chemos so far and the third one is due on Weds. The bald bit is true unfortunately unless you do the cold cap. However not lost weight, have actually gained some weight due to stuffing my face. Chemo makes you want to eat and as for the sickness due to the anti-sickness meds I haven't been sick at all (touch wood). I have found that the thought of chemo is actually worse than what it is. Chemo treatments have come a long way now compared to years ago and are tailored to each individual's particular cancer. Most women suffer minimal side effects and can most of the time go about their daily business.
PaulS - hope you are well and that your op goes ok. I am due to have an ANC after chemo and I am scared about having all my lymph nodes removed 😞 let me know how it goes for you and I hope there is no cancer in the nodes for you. As for chemo, if they recommend you have it then take it to ensure that everything has been thrown at it to make sure it stays away!
Sisterjayne - good luck with the radiotherapy treatment. Do you have to take tamoxifen for 5 yrs and have you started it yet?
As for me, I am still swinging between being positive to still being scared out of my wits. Still can't believe I have BC as feel perfectly well even whilst on chemo! The fear of recurrence weighs heavily on my mind even though I have been told I have 87% (at 10 yrs) of being cured. Keep thinking yeah thats good but what about the 13%!! On anti-depressants now, the nurse at the hospital is going to refer me for psychological therapy. Have also accessed services at the local Haven Centre. Got an appointment tomorrow with the nutritionist, booked hypotherapy, aromatherapy appts and a Haven introduction day where I can meet other women who is going through treatment. Chemo no 3 is beckoning and after that chemo will be at the halfway point in the treatment 🙂 xx
Thanks Sisterjayne. I do feel incredibly relieved and now am back to simply wanting the surgery over so I can get on with the next part. But as always my head is full of questions! I'll ask them on Monday I think. I am annoyed about the surgery as I have healed well, and am driving fine, and have full use of my arm. Now more surgery, and this time I expect there to be a longer recovery time as more will be done. But, I am trying to focus on the positive here. I know what you mean about feeling well! I feel better than I have for years after all this weight loss, and in many ways still think this is all a big mistake! Everyone keps telling me how healthy I look! Best of luck with the radiotherapy on Wednesday - this is your 'mopping up' starting so you are on the next stage of your journey. It will be fine, but remember to take care of yourself and rest lots. Let us know how you get on.
To show you all my complete ignorance and make you laugh - I did not realise that we had little groups of nodes in other parts of our bodies! I thought it was only under the arms. Good job I am not a medic!
I know exactly what you mean - I feel just the same. Nobody expected that the cancer would be in my lymph nodes, so there was no talk of chemo, just radiotherapy. But now there is, and I can't bear the thought. But, if I need it I will do it, as this period will be over (even if it takes six months!) and my hair will grow again (and so will yours!) and we can try the cold cap which works for many women. I want my life back and so do you - and if this is the way to get it we have to grit our teeth and do it I'm afraid Mel. Reading posts from those who have been through it suggest that the anticipation is far worse than the reality. We HAVE to keep that in mind!
I have been reading another thread which is discussing how to boost our immune systems - and I have begun doing many of the things it suggests. One part of the book describes how to get through the chemo with the minimum of symptoms, and so I am doing them too, in preparation (anticipation?). Take a look Mel.
Just had a call from the BN from the hospital and all my scans are clear - liver, lungs, bones and CT scan. What a relief! She was so positive and reassuring! Told me I didn't have to go in tomorrow to get the results as I now knew they were clear, and that she wanted to let me know asap because she knew how hard all the waiting was. Now preparing myself for the second surgery on Monday 4th, but with slightly less anxiety.
I hope you are all doing OK. And Sisterjayne and Mel, good luck with this week's treatments. I'll be thinking about you all.
Morning Mel & Jane
Thinking of you both as you are preparing for Chemotherapy. Yes IF you are going to loose your hair it generally starts about two weeks after first session. In answer to how long does Chemo last!!! The most common Chemotherapy Regimes seem to be FEC x 6 sessions or FecT which is 3 FEC and then 3 Taxol. Some units use AC some all Taxol and occasionally other slight variations. Generally 6 sessions 3 weeks apart but again some units (I know Blackburn / Burnley and some Yorkshire Units use 8 sessions of a slightly lower dose).
I have always been a calm, organised and confident person but i was more shocked at the anxiety that having Chemotherapy provoked in me than I was at the Diagnosis itself so i can really feel for you girls at the moment with unanswered questions.
I had Chemo prior to surgery to shrink a 6.5 cm tumour so it was a heavy dose but a lot of the ladies having Chemo at the same time have managed to preserve their hair using Cold Cap. Maybe the Nurses at your Chemo unit would be able to say if this is available and hopefully when you have your Chemo planning appointments with the Oncologist he / she will be able to discuss / advise their recommendations.
Make sure you girls take care of yourself on the Chemo to prevent any infections. I worked through Chemo but i then hadn't had Surgery first so made sure i kept my own crockery / cutlery and we have a Wheelchair Access toilet hidden away downstairs so i used that rather than general ones used by 50+ people. I am a Community Psychiatric Nurse but wasn't allowed to visit clients in their own home (Occupational Health were excellent) so did a Duty Support Role (this is usually done on a Rota Basis) this all helped me keep some normality to my life. Diet etc similar to when pregnant no pate, no soft cheese etc
I am now 20 months on from my diagnosis (have had Surgery x 3, Chemo FecT x 6 and 15 Radiotherapy sessions which i think is all standard but didn't feel like at the time, all felt very personal).
I am going 4 August for final surgery of reconstruction, expander exhange and left side matched up.
I can remember being where you girls are and it was all very daunting. When i said to my Husband, just after my Diagnosis, that i really didn't think i could do all this he was astounded and reminded me of just how tough us girls are. We organise the lives of our families, take care of them, go to work, mediate in personal and working lives and we can definately do this. Girls, Take Care of yourselves, it does get better and you will be able to get on with life, parties events etc.
Take Care Gilly x
Jane-t, that's good news for you! I am so pleased for you. I have been reading about chemo and the hair loss is different for everyone - depends on the actual drugs, the strength and combination of them, the number of treatments we need, so best to ask the doctor. I am being philosophical about the second surgery - it will be over a week on Monday and as the BN said that will be all the cancer away. I recovered quickly after the surgery on 7th July, and this time only one wound, not two. Very best with the chemo - it is hard, isn't it, but it will end and we will get back to normal! The BC nurse told me to look out of the window (it was a busy period in the hospital and many visitors were milling about). She said that 1 in 4 of the women will have been treated for BC and they were now all getting on with their lives, and that I will too. And so will you.
All the best for next week, and then the week after. Let us know how you get on.
I was at hospital yesterday and im lucky that they removed the cancer and had enough clear margin so i dont need further surgery thankfully. I do however need to have the chemo an then the radio. Im to see the oncologist on wednesday and they say will prob start chemo the week after. Does anyone know how long after ya first chemo session will my hair start to fall out?? i forgot to ask this question...
Very interesting news today about new way of delivering radiotherapy! They implant something during surgery, then no need for all these hospital visits! The doctor they interviewed said it had now been approved, that the results of their clinical trials were excellent, and that the were already using this approach in Germany and Scandanavia. Apparently there are already machines in the UK! I plan to ask about this.
Mel, I completely agree with Sisterjayne - whatever it was it has gone!!!
As I said, I have to have more surgery on 4th August to have all the nodes removed as a precaution. I was also sent today for a scan of my liver, chest X-rays to check my lungs, and bone scans and a CT scan. Long day! Anyway, I was told by the doctor who did the scan that my liver was fine and clear, and that the bone and CT scans showed only normal wear and tear for someone my age (this was the chief radiologist, but she was very reassuring and said she sees a lot of scans)! Haven't heard any result for the x-rays - I get them on Tuesday. So, depending what they find in the nodes removed during the surgery on 4th the treatment might change from radiotherapy only, to chemo and radiotherapy. I'll let you know. I am trying to get my head round that possibility, but will get there.
They are very positive and told me to see this as a small setback and that they expect to rid me of cancer completely and let me get back to normal. I feel better today - the BCN was just great, and she helped me regain perspective. I asked again if these scans were done on everyone with node involvement was was told YES! they are in this centre and it is not that they think it has spread (I have to be honest, I was upset by that comment on the forum and that's why I have been quiet for a few days but that was probably because I had just been told it was in the nodes). They do not expect to find anything with the scans but go for a belt and braces approach.
Hope you are all doing OK, and good luck with whatever you are dealing with this week.
Hi jk, I'm pleased to hear your good news too, wonderful news 🙂 Don't feel bad for one minute about expressing your fear while you were going through that uncertain time, everyone on here will understand that. The anxiety and fear that come from knowing there might be something in there which is abnormal is overwhelming. Good luck forthe 7th, I hope that once you get that done and heal, you can move on with your life again with some peace of mind xx
Thanks Sisterjayne 🙂
Next chemo is next Wednesday so will be at the half-way point. Still feeling very scared about the future and wish I could focus on the 87% cure I have been given and not worry about recurrence 😞 life will never be the same for any of us after BC. How does cancer survivors handle the anxiety year after year? They say BC is more likely to recur up to 3 years after treatment and if you get to the 5 yr mark then the chances of recurrence start dropping rapidly. Its going to be a nerve jangling few years 😞 xx
Hi all, sorry to hear about your results Pauls, sounds similar to me, cancer showed in one sentinel node and so I had axillary node clearance and CT scan. I wasn't offered a bone scan though, and wanted to know if this is something which other people are offered routinely - should I be pushing for this? They say they only do a bone scan if there are symptoms of bone mets, I'm not sure I trust them 😞
It would be good to hear what scans other people have been offered at this point in the journey. I'm pre chemo still, starts next week.
Sorry to hear that your results were not as you expected. I was in the same boat in May when I was told they didn't get clear margins and the SNB came back as positive for cancer. The SNB result was a shock as my initial ultrasound on my armpit showed my lymph nodes as being clear. I can imagine the shock you are feeling and that potentially your treatment could be changed 😞
However the intention of the treatment is to get you cancer-free. If chemo is needed then it will be to mop up any stray cells. I have had two chemos so far and touch wood have suffered minimal side effects. My next chemo is next Wednesday meaning I will be at the halfway point.
You are a positive lady who have already overcome diabetes and you will do the same with cancer xx
Thanks everyone - I am keeping busy and trying to be positive! I know that their intention is to get me cancer free - that was said several times today - and I'll do whatever it takes to achieve this. However, I realise now that I might need chemo, so I am going to have to speak to folks at work and let them know this might be on the cards. I had hoped to get through this with hardly anyone knowing, but this is looking less likely now.
Mel - good luck on Thursday. I think you should push hard for whatever you feel you need to reassure you and help you cope with whatever is happening now and what is to come. I will be thinking about you.