I saw the Oncologist yesterday and was told that I now move into the 'observation and checks' period and all treatment as such is completed. I will see the surgeon in 3 months time then alternately every six I will see the Oncologist and Surgeon. I will have to have bilateral mammograms every year for the next five years and continue with the hormone therapy. My BCN has discharged me from her regular visits but I have the option to phone or email her if I have any problems. My skin is good now and generally I can return to normal life again although with the limitations for the rest of my life brought about by the axillary clearance surgery. So, after 7 months of various 'troubles' I can re-start my life! Feels rather odd though as my life will never be the same again.
Thanks for all your info topsymo. Just seen on another thread about someone who has just come back after a long haul flight, so can see it is doable. Just hope I have WLE and RT now .
Have seen on another page that they can test the nodes while you are under anaethestic to save another op. Will have to wait and see if that happens to me.
Just realized I forgot to comment on your query re your trip to the Far East. assuming you only have WLE ad rads, definitely don't cancel your trip.
I had to have chemo and even with this, my onc was happy for me to go ahead with a long- planned trip to Kenya mid-way thro' treatment. In the end , for family reasons I didn't go (and got all the insurance money back with no difficulty with a doctor's letter) but I did go abroad a few weeks after rads with no probs at all. - it was my way of telling the 'orriblel BC that it hadn't taken over my life- (even though It had felt a bit like that thro' 9months of treatment)
Hi Gocat - as you will see from reading this thread, lots of us have trodden the path you are now on- but that doesn't make it any easier for you!
With Sentinel Node Biopsy the surgeon only removes 1 or 2 nodes (ie the principal or sentinel ones) and if they are cancer-free, you don't have to have the bigger op. - which is full axillary clearance- when ALL the nodes are excised.
I understood that the results of a SNB take time to analyse (in my case it was over 2 long weeks) - but maybe you are somewhere where they have more advanced techniques? I was one of the unlucky ones (aren't we all if we have BC?) - there WAS spread to the sentinel node so I had to have the full clearance after all: but then when I had the 2nd op. they found no further spread- which meant all those nodes had been extracted needlessly - and I now have all the joys that go with that , including a spot of breast lymphoedema!
Anyway - enough of that - just hope YOU are OK and don't need all your nodes removed. The WLE really is not a big op. I had never had surgery before and was quite nervous but it was fine. Even if you do end up having all your nodes removed, that too is only an extra night or two. It's a drag and you may have to go home with a drain in situ - but even so, it was not a big deal. (avoiding chemotherapy is the real prize; rads are OK for most people.)
that sounds like sentinel node biopsy - locating and removing the sentinel nodes to test, though mine were tested with my WLE and I got the results a week later with that (thankfully both nodes clear)
One thing I remember the consultant saying was that they will take 2 nodes from under the arm. Test them there and then and if they are cancerous remove remainder of nodes. Dont think I have seen anyone else mention this here. Also am wondering what is this result of node/axilliary clearance I've seen mention which you seem to wait 2 weeks for?
try not to worry gocat (easy to say of course !) I'm a huge wimp but found my WLE and SNB really quite ok - was very nervous before. My rads were about a month or so after surgery, am quite fair skinned and did burn a bit,but aqueous cream helped- your radiotherapists will advise and there are lots of useful ideas on threads here, bio oil etc. Really good luck on Monday xxchipperxx
Been reading this thread with great interest as I am going into hospital tomorrow to have a lumpectomy on Monday. Was told will probably be home on Tuesday. This will be followed by RT. Was surprised to read there is a gap between surgery and having RT but now realise you have to let the scar heal first. Im fair skinned and diabetic so thinking it will take time for the scar to heal, then will probably get burn marks from the RT.
Was planning on going to Malaysia and China on 29th October for 3 weeks (visiting relatives). Flight already booked before diagnosis but guess that will have to be postponed and insurance will be a nightmare to get too. Anyone here gone on long haul flight 2 or 3 months post op?
Oh well, have to get the op over and done with first. Im soooo nervous.
Hi Debs, I hope you are coping with your last session's effects reasonably well and resting as much as you can. I went to the prosthetics clinic yesterday and had nearly an hour of being 'fitted' for something to level me up - finally found a 'smile' chicken fillet that does the job pretty well although there is still a slight difference. Still it won't be so noticeable as my natural state would be when I return to work - I've never minded friends and family seeing me as I am. One thing I discovered is that my scar is considered to be very tight and at first BCN said I may need surgery to relieve it, or we could try intensive use of E45 in a couple of weeks time when my skin is more normal again - I opted for the latter in view of already having had two ops this year and each with a pretty rough recovery period. The only problem area with my skin now is around the breast scar - all the rest of the area has gradually peeled just like sunburn - with no discomfort in that process at all.
I'm glad to say the exhausted feeling has gone now and I get more like a normal tiredness but take less effort than before BC to get tired - but as with everything else it is taking time but improving all the same. I go to see the Oncologist on 21st and my GP on 24th, who knows, by then I may feel ready to say I want to return to work.
Time will tell on that one!
Do look after yourself and pamaper yourself when you can.
Hi Topsymo, I agree with you entirely, every one of us will experience 'the same treatments' in different ways. The problems I had were minor compared to some ladies and major compared to others.
I guess it is a sad fact that so many ladies do have breast cancer that treatment sessions can seem somewhat like a conveyor belt, I was warned of this by my BCN but didn't find it distressing, more of an endurance test when waiting for my session because of various delays.
I suppose I am one of the 'lucky' ones where chemo was not a necessary treatment, and left to me to choose whether to have it - as it would only increase my possible survival rate by 1-2% I opted to keep chemo in reserve in case I am unfortunate enough to have a recurrence.
3rd one over another 3 to go!! but a change of drugs/poison!! on sofa again today, my permanent spot!
Sorry to hear you are still feeling so tired, someone else told me about spirulina (not sure about spelling) a herbal remedy which apperently is great for tiredness and energy!
Good luck with the evening up clinic!! we do go through it don't we!
Take care, love debs xxx
Just wanted to butt in here to say that it is not inevitable that you will have a bad skin reaction and/or extreme tiredness with rads.
I am sure that I'm not alone in finding it an OK experience (compared to some of the others -especially chemo. )
I am retired so going back to work has not been an issue - but I found my overall health actually seemed to begin to pick up during rads- helped by the supportive attitude of the rads staff maybe?
I had a long journey each way but found the driving OK - and I'm no superwoman. I think a lot of it is luck as to how we react to the different treatments and experiences that this delightful disease throws at us. I certainly think my chemo experience was made worse by the overcrowding, lack of privacy and production-line quality of some of the nursing in the chemo department where I was treated.
Is this next session your last of chemo? I hope it is not too traumatic for you, although if it is anything like the effect of RT the more you have the worse you feel. I felt dreadful by the end of my three weeks RT. As to going back to work I think my head is ready where my body is not, yet, as I still get tired very quickly and can't manage much more than 1/2 hour drive before I feel in need of a rest. As I am a peripetatic NVQ Assessor I need to be able to drive and have my wits about me for individual sessions of tutoring and assessment. I'm hoping I improve more over the next few weeks as I have in the past few.
I have a new experience planned for next Monday - an assesssment at the prosthetics clinic for although I don't mind so much my family and friend seeing my uneven bust I don't want to be meeting new people in that 'state'. My skin hasn't completely recovered from RT so I don't know if I'll be able to wear a prosthesis next week or whether I'll have to wait a bit longer, but at least I'll see what is available to even me up again.
I'll let you know the results of that visit.
Hi Anne, glad to hear you are getting back to normal and feeling better! You will be back to work soon!!! thats not a good thought!!!
I have 3rd chemo today, not looking forward to it! will let you know how it goes.
love Debs xx
How are you all doing? It's gone very quiet in this little forum recently; for myself it has been the RT and it's after effects with extreme tiredness and lack of incentive to do much other than 'rest'. I'm glad to say I seem to be over the worst now and am getting back into doing things, including sitting at the computer for more than two minutes.
I hope all is going reasonably well with you. Let us know how things are when you have time and incentive :-).
Thanks for your encouraging words re RT. I am using the cream twice a day and all looks ok so far. I was warned the tiredness can continue to increase even after treatment is finished and you have confirmed that it is more than a probability. I'm not sure if this is early tiring but I have slept much better the past two nights, maybe its a combination of RT plus relief at finally getting to this stage.
I hope all is continuing well with you.
Love Anne xx
Just wanted to drop in, and wish you well for your rads. I hope they all go smoothly for you, I finshed mine on the 4th June.
Give in to the tiredness if it hits you, I felt I often needed to rest a bit more. Also, the effects seem to build up, and I have to say the last 2 weeks, since finishing treatment, have been the most tiring for me so far! I think that is quite a common reaction.
Hope your skin behaves, I kept slapping on the aqueos cream, yes, the skin felt a bit itchy and prickly with a bit of peeling, but again - basically fine.
Take care - it has been an odd experience, hasn't it? I have a feeling we will always feel affected by it all, even when everything is finished from a medical aspect.
Hi everyone, how are things going with you all? I started RT yesterday and was more tired by the waiting for transport than the actual treatment. Of course I was a bit apprehensive as we all are for a 'first time event' but the staff were so pleasant and helpful and treated me with respect by answering all my questions, even though to them they may have been trivial. I was warned that tiredness will start to come into effect after a few treatments and can progress to feelings of exhaustion, but it is not the case with everyone, so we will wait and see. It would seem that today and all future sessions will not be as long in the department for the machine is now configured to my measurements so I am hoping I will get home a little earlier today - yesterday I was out of the house from 11.45 until 4.45 with only fifteen minutes being actual treatment related!
Have as good a weekend as you can manage.
Thanks Anne, will let you know how it goes!It really strange all these side effects we have to go through!!
love Debs xxxx
Just want to wish you good luck for tomorrow and to let you know I'll be thinking about you. Write when you can but there's no rush -just take it one step at a time.
Hi Lucy, thnaks for the link to the booklet. Reading this has helped a lot and if 'hair might drop out' turns out to be only axillary hair I can cope with that:-).
Here's the link to our publication about radotherapy which you may find helpful to read prior to starting treatment:
I hope it goes well for you tomorrow and was glad to hear that your experience of lst time's chemo wasn't as bad as you thought. I guess we all find that once we start 'the treatment' whatever it is, it is not so bad as we imagined. A good buffer for us though I think.
Debs, it sounds like an early appointment for a wig will be a good idea in view of Marion's news.
I had a bit of a shock today - my GP practice nurse called me for a Diabetic check and she didn't know about the BC and all that has gone on this year. When she recovered from the shock and we talked about it all and my RT starting next week she asked if I had been warned that my 'hair might drop out' from the RT! That was something I'd not had mentioned before so I may be needing a wig clinic appointment too - but will wait and see. The hormone treatment has affected my hair quite quickly though - it has lost all its waves, is absolutely straight and flat with no lift at all even with a styling mousse and I've had to have a re-style to grow a bob rather than have my hair layered in a short style. Feels and looks strange to me but I'll get used to it in time - if I keep my hair that is! Take care
Love Anne xx
Hope it is ok tomorrow Marion, hearing about your hair hope my appt from wig clinic is quick!!!
You are right about the fear of the unknown, maybe its good to imagine the worst then it doesn't seem so bad!!
love debs xx
Well I am due my second chemo tomorrow. The first one was not that bad when I think back now. I think the thought of it gets you all worked up and when the first one is over its like a sense of relief. Its the fear of the unknown. I hope this one is simliar to the last. My hair has nearly all gone got the OH to shave it of last night as was loosing it all over the place. Had my wig styled to day so the new woman can emerge!!!
Debs , good luck for Tuesday, I'm sure you'll be fine.
Its pooring with rain here now don't you just love the British Summer.
Take care all Love Marion xx
I'm glad you don't have to wait too long for the next stage to happen. A week will give you time to read up on anything you have concerns about or to chat with your BCN. I guess chemo is an unknown quantity in a way for it will depend on the drugs that are used as to how ill you may feel (or not of course) and what side effects you will encounter. I guess it will be a case of bear each thing as best you can and keep the positive thought that all this is to prevent recurrence of cancer in the future. I start RT next Thursday and otherwise am ok right now. Maybe next week we'll start comparing notes on how the different treatments affect us. Take care and be strong.
Love Anne xx
Hi Anne, hope you are ok. Had appt today with onc and start chemo next Tues so not too much time to get worried!!
Just have to wait and see now how it will affect me,
love Debs xxxx
Thanks Anne, will let you know the outcome! Just want to get it started now! Love Debs xxxx
Good Luck for your appt on Tuesday, as you say you will finally know when treatment is going to start. As I understand it you have chemo before radiotherapy as a general rule. Do try not to be so scared about treatments, although I believe chemo can be hard going at times it will be worth it knowing you are doing everything you can to prevent a recurrence in the future.
Everyone is giving me the advice that I will feel tired, fatigued and exhausted by the radiotherapy as the course progresses - my sister warned me that it can continue up to six weeks after treatment is completed! So I will make sure I have plenty of food in the freezer for days when I don't feel like making a meal.
Keep your chin up my friend.
Love Anne xx
Got appt with onc on Tues so hopefully i will know when it is going to start. Even though I'm really scared about it I just want to get it started now, then it will be over sooner!!
Rain has now stopped here, so toed the garden a little.
Glad it is all setling down for you,
love Debs xxx
Hi everyone, I guess we've all been busy with our own things this week. Debs have you heard when treatments start yet? I found the waiting for the next step to start was very frustrating.
Marion, I hope the chemo is still going relatively well for you and you are not feeling too knocked out by it all.
I would say my insomnia is settling a bit now and I am having fairly good nights most nights with only one or two where I can't sleep.
Rain promised for the weekend, and ther is certainly plenty here in Yorksire! I hope some of you manage to see the sun.
Love Anne xx
I actually agree with you regarding the 'group stuff'. I went to the introductory session at the Haven (that is the only group thing I have done) and made friends from there who I connect with. The other sessions at the Haven I will do one-on-one (apart from Yoga).
I am actually new to the UK (originally from Australia)... I am happy to know that you are relatively local to me!!! That's really lovely 🙂
For me, the Haven is a good resource as I don't really know anyone in the UK. For a very long time after I was diagnosed, I never even met or talked to, face to face, a real, live woman who had also been diagnosed and affected by breast cancer. When I met my first one, I was somehow in awe (I don't know if that makes any sense at all?). It was a really positive thing for me.
I have so much respect for all women (and men) who are living with and dealing with this disease. And, I am very grateful to find the friendships that I have on the way.
Take care and *hug*
Hi Yvette, you're relatively local to me, I'm in Dewsbury. I looked at the breast cancer haven website and got the dvd but feel 'group' stuff is not for me. I am ok with a group such as this online and meeting up on a one to one or two basis. I have a good network of friends who are very supportive and although my family members are scattered they give wonderful support too.
Love Anne xx
Hi everyone 🙂
I am so proud of the ladies who are going through the chemotherapy! All my very best and positive wishes are with you! I will continue to read this thread to see how you all are doing. I am hoping that you will be well throughout the treatment.
Thank you also for your kind words of encouragement to me 🙂
I am still struggling a little bit with wound closure and seroma. Surgeon said that these things will work out in time, so I am trying not to think too much about it... just keeping the gauze on it. Next week I will talk to the oncologist about further treatments.
Before my second op I started going to the Breast Cancer Haven in Leeds. Have any of you ladies tried that? Here is their website if you are interested:
I have found my experiences there to be very happy and postive, and have also met many wonderful women who are going through the same experiences.
My very best to you all!
Anne, Glad that you have now got the hormone therapy sorted. I know what you mean about not sleeping I am wide awake in the middle of the night.
Debs, Glad you had a good holiday it’s so nice to feel "normal".
Yvette, I hope that we can all help you on the way to recovery and back to normal. Keep the thoughts positive it really does help.
I started my chemo I am now on day 11. It’s not a bad as I expected Think I had the worst case in my thoughts and that for me helps as when it not it’s a bonus. Crazy I know. I am now stuck at home as I had to go back to hospital on Friday with a sore throat and mouth. They were on about keeping me in as my white blood cells have almost disappeared; luckily the doc was ok with me coming home as there was nothing else wrong with me. I have to be careful that I don’t pick up anything else. At least this stuff is working if its killing the good cells think what it’s doing the bad boys!!!!!!!!!!! so I’m staying here until they say my cells are ok. Hopefully not too long, I am missing my Granddaughter's 2nd birthday today which is really rubbish, but when I am ok we will have a tea party for her.
Enjoy the sun (well the shade) Take care Marion xx
Hi Debs, so glad you had a good holiday. I hope your depression has lifted a little though, positive thinking is what you need right now - "I am going to beat this" " I am going to respond well to all treatments".
Put some favourite relaxing music on when feeling 'blue' and think ahead to when this is all over and you can return to normal life.
I've got the side effect of insomnia with the new tablets - so if I don't sleep I get up and read then doze during the day unless I have somewhere to go and I'm trying not to get too stressed by sleeplessness.
I go for my RT planning on Tuesday so will let you know what you can expect.
Look after yourself.
Love Anne xx
Hi Anne, glad to hear you are sorted out re treatment! And hope fully enjoying the sunshine. I had a lovely week in Rhodes, felt normal, then got major depression on way home.
Love debs xxxxx
Hi Yvette, I'm glad to hear you've found our shared experiences a help to you - I think that is what it's all about -helping each other through all this journey along a road none of us would have wished to take. Good Luck, let us know how you get on.
Thank you for your postings and for the encouragement that I have had when reading them! Although I have had treatment at a later stage than you, I have had many of the same problems; lumpectomy and SNB, post op infection, reexision and then having to have a full axillary clearance, numbness post op, and now waiting to know if I need chemo or not, but knowing that I definitely need radiation therapy and hormonal treatments.
It has been a pretty scary journey so far. Just knowing that you are all doing really well has meant so much to me!
Thank you very much 🙂 and my very best wishes to you all,
Well at last I feel I have begun my hormone therapy as part of treatment - I went in hospital again on Friday for an overnight stay for medical supervision with another hormone tablet - Femera and had no reaction to it thank goodness; took another tablet yesterday evening and felt fine. I know there will be side effects which I'll have to deal with but they are pretty much the same for any of the hormone therapy drugs.
It is a glorious day here in Yorkshire and the promise of more to come tommorrow, I hope it is the same where you are and we can all enjoy a bit of cheering sunshine and warmth to set us up for 'things to come'. Take care of yourselves.
Love Anne xx
Hi Anne, glad they are going to sort out medication properly, as you say its probably better to be in so they can keep an eye on you!
Work has been fine, has been good to be back! We are off on holiday tomorrow for a week, might be able to get on a computer but not sure!! Hopefully will set me up for impending treatment!
Love Debs xxxx
My BCN took my 'case' to the MDT today and phoned me to say they want me to go into hospital next week to start a different hormone drug but be under medical supervision this time, in case I react. It may be because I live alone and did have a bit of a panic on Monday night when I reacted to the Arimidex. I don't know when I'm going in but BCN will ring me tomorrow when it is all arranged. To be truthful I am glad that I'll not be alone as it is a bit scary when it happens - I truly hope nothing will happen with the new meds though.
How are you feeling now that you've been back at work a few times? Not too drained I hope.
Hope you are feeling better and got it sorted now. I am off today at my heads insistence, wasn't worth arguing!
Its amazing how our bodies react isn't it, especially to medication especially when we can feel so well with cancer, as someone else said on here its the treatment that makes you feel ill!!
love debs xxx
Hi Debs, GLad to hear that your first day back went well, perhaps your Head's suggestion of working part time is one to think about. I had a bad night last night with a kind of allergic reaction and have not taken Arimidex today. Talked with BCN who advised no more until I saw my GP - surgery was on'protected time' today so will try to see him tomorrow. I've felt off it today and very aware of my mouth and tongue -strange to react 12 hours after taking the tablet though!
Love Anne xx
Well Anne i survived Day 1, feel a bit tired but ok! My head wants me to have Wed off so I don't get too tired!
Dr and BCN nurse said it was fine for me to return and my cert had run out!! Oh well see how it goes, will probably be off again when chemo starts, but i did enjoy being back. Nothing like a class of children to distract thoughts!!!
Hope everyone is ok, and it is a shame we are not all nearer!!
love debs xxx
Well ladies, having read the Arimidex info sheet and reading "if you get breathlessnes, swelling of the throat or tongue please dial 999 immediately" you will appreciate my having a bit of trepidation when I took my first tablet at lunchtime today. I'm pleased to report no symptoms of anyphalaxis as yet!! As to the other side effects, as they come I will have to deal with them as best I can.
Debs, I hope you've not gone back to work too soon but can appreciate your wanting to get back to normal too - I presume you will be able to take further time off as and when you need it without any penalties? My GP has told me I cannot return to work until I've had the radiotherapy and recovered from its' affects - don't know when that will be.
Lizzie - good luck with your RT and do keep us all posted as to how you fair, we are going to be there soon ourselves.
Marion I can understand the weight being lifted from you now that you know there's no more surgery to be faced.
Good luck to us all in the next stages we are facing regarding the BC. It's a shame we live so far apart otherwise we could have had arranged a meeting up now and again. Thank goodness there is this forum 🙂
Love Anne xx
At last we have all had some positive news.
Anne: I am so please for you that you got to your decission and no chemo.
Debs: looks like its you and me down that road. So you are going back to work I don't think I could at the mo as my arm is still very sore.
I cannot belive the relief that i felt yesterday like a big weight had been lifted. Even the though of chemo doent seem that bad now.
Thank you all for your good wishes It works. All that postive thinking!!!! Have a good weekend Marion xx
Anne, so pleased to hear yr results and it sounds like you have come to the right decision re chemo and radiotherapy.
As I now have my appt to see oncologist on 9th June I'm going back to work on Monday, that will be a shock to the system!! But I have to say I'm lookig forward to it!
Marian, pleased to hear no more surgery.
Lizzie hope you are well
Love Debs xxx
Good news, Anne, I'm so pleased for you.
I have had the first 2 sessions of rads this week, so will keep you posted as to how it goes, I'm sure with your positive spirit you will be fine.
And Marian, glad no more surgery - although what a c*ck up in the clinic - you would think they realise how stressful results are, and get it right! Every time!!
Debs, Freddie, have a good weekend - fingers crossed still for you, Freddie
Take care all
Hi Debs, Marion,
Thanks for your good wishes for yesterday - I think they worked.
I was told that the recommended treatment for my breast cancer was radiotherapy (RT) and hormone therapy but I was offered the choice of having chemotherapy as an extra treatment. The Registrar that I saw told me that some ladies choose chemotherapy to try to make sure of 'a cure'. We discussed the advantage of my having chemo and it comes to a 1% increase above the figure calculated on RT and Hormone only in my chances of 10 year survival. We discussed it quite thoroughly and I gave my decision to NOT have chemo at this stage but to keep it in reserve in case I do get recurrence in the same breast at a later date as this is a possibility with the type of cancer I have, and if I do have recurrence there I will not be able to have more RT on the same site. The next step re RT is that I will have a planning session at the Leeds hospital in about three weeks time and then the treatment should start 2 to 3 weeks after that and will be every weekday for three weeks. I have been warned that the RT will gradually make me feel tired and weak as the treatment goes on and it could take me up to a month or so to recover strength and energy when RT is complete. The doctor was pleased with my wounds and said that although there is still some inflammation from the surgery it will not delay the RT starting; she also said that as I have good movement in my arm and no pain I could (after next Tuesday when 4 weeks post op is met) try some little short drives to see how I manage then gradually increase at my own pace if all felt well.
I was glad to read your news Marion re no further surgery and hope all is well with each of you. Love Anne xx