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starfish
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since
01-05-2012
185
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30-03-2010
07:41
Bahon
PS It is good to hear from you again. I had been wondering about you as you didnt seem to be posting for a while. I do not come on here much now myself. Trying to get on as best I can now Herceptin and chemo finished. But hard with lymphoedema and all the side effects of the various treatments we are left with to say nothing of the phychological effects.
Also how are those of us with lymphodema placed with regard to a reconstruction which I would like eventually if I can but worried about implications for lymphoedema.
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30-03-2010
07:36
Bahon
Thanks for the suggestion. Sadly my arm has got bigger since being dx just over a year ago. I did the massage for a year (I guess I couldnt have been doing it correctly as it got bigger).
I have been lax I confess. I have had it up to here with hospitals. I did see a physio before christmas and then when I was due to go back she had to cancel the appt and I havent made another but I will.
I have just had a holiday for a few days in Devon and the hand (which had gone right down) swelled back up again. I find sitting and travelling in a car very bad for the lymphodema despite doing exercises during the journey.
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30-03-2010
07:27
I also have painful feet! It seems to have got worse. I had 4 FEC & 4 taxotere plus Herceptin and now on Arimidex. It seemed to start suddenly after starting the Arimidex but could be coincidence. In fact i have made an appointment to see my GP about it so will see what he says. I find it painful to get up if I have been sitting for a long time ie in the car, at the cinema etc. I am nearly 58, 4 stone overweight. So he will probably say it is arthritis and the weight! But I do find shoes with a good sole help. Such as hotter shoes! and trainers.
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12-03-2010
05:17
Another lobular lady here! I was dx Feb 08 and it wasnt picked up by a routine mammogram 15 months before by which time it had travelled to 6 lymph nodes. I was Grade 2 and also HER2, so I am very rare!!!! I think. I have not been offered ultrasound and only had a mammogram on the other breast last month two years after dx. I have had no check ups. It seems that despite being in lymph nodes they do not think I am high risk. I have heard of others being checked every few months.
Lobular is also generally usually Grade 2 I think.
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12-03-2010
05:05
If it is anything like the one I went to nearly two years ago it was very very good. And a bag of excellent goodies to take away with you. I found the consultants very helpful and it was a real morale booster when you are feeling at your lowest like I was. I hope you enjoy yours.
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28-01-2010
06:33
Good luck for Monday and give a plug for BCC. Maybe you can mention being HER2 for those of us that are and this then being 22 months of treatment. Also as has been said problems with arm after mastectomy like arm stiffness and lymphodema. Thank you for appearing and representing us all. x
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27-01-2010
05:11
Hello Everyone from Gloucester
I will soon be moving to Gloucester I hope. I have heard that Cheltenham Hospital is a centre of Excellence. Can anyone tell me what this means please?
Thank you. x
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20-01-2010
03:10
I was screened at 51 and again at 54. Nothing reported. 15 months after routine screening i had an inverted nipple subsequently dx with lobular grade 2, spread to 6 lymph nodes and HER2. Needless to say i have little faith in mammograms. From what I have read most bc is found by the woman herself and the figures say that 1,400 cases a year are found from routine screening. This doesnt seem much to me out of the 45,000 cases at least a year. Like the newspaper article says i feel that people are surviving longer because of better treatments.
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18-01-2010
04:16
Maddie
Thank you for your very helpful advice. I was wondering around Wilkinsons Saturday when I saw something similar and wondered about them but didnt buy them. I will buy some from Boots and see how I get on.
In answer to a previous comment I do have a washer up most of time. He is called a husband. And as well as supporting me with all treatment he does washing up 90% of time but dishwasher (not - husband) has not worked since christmas - so far not been fixed owing to snow and I was forced to do a small amount of washing up.
As it is because of lymphoedema there are many things I no longer do because of fear of exacerbating ie heavy gardening, digging, vacuuming, and I am no longer able to return to my old job as a secretary as I feel bashing a keyboard for hours on end would not help either.
Maybe my sense of humour has disappeared along with my confidence following the journey of two years I have been on.
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18-01-2010
04:01
I have had lymphoedema for a year and my arm has increased in size. It now sometimes aches. I also get pins and needles in the hand first thing in the morning or if I hold something for a while. I also get it in the other hand as well - unaffected side. Do you get this? The lymphoe nurse did ask if I had pins and needles and I said no forgetting at the time. Is this serious? I wonder if lymphoedema and lack of lymph glands causes all sorts of problems. I also get excessive sweating on that arm now and my GP said it is caused by severing the nerves under the arm.
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14-01-2010
01:18
Does anyone know where or if you can buy ex large rubber gloves. I do and have always worn rubber gloves for washing up which is recommended for lymphoedema anyway but now i find even the large gloves are too small on the arm and it is difficult to get them beyond the wrist. Yesterday I washed up having folded gauntlet back and put on glove. Result a soaked glove and soaked jumper. No joke in this freezing weather. The practicalities of wearing a glove i find almost impossible when doing wet jobs.
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09-01-2010
02:47
In February I am due my first checkup. 2 years after dx. 3 months after finishing herceptin.
I am considering having and paying for if necessary a full body MRI instead of a mammogram.
A mammogram 15 months before my dx did not pick up the lobular cancer which I was eventually dx with which by then had spread to 6 lymph nodes and was aggressive being HER2 positive.
I would be interested to hear others experiences/views as I am convinced the cancer is still there and that an MRI is the only way of picking it up. I need to know for future plans I wish to make.
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09-01-2010
02:42
I too can identify with this. The medical profession treat the physical effects but for the rest you are left to get on with it and if you look ok you must be ok! Lack of libido and its effects on your relationship to a partner you has probably supported you through everything and lymphoedema are some of what i am left with. Lack of libido receives no support and lymphoedema scant. I am left feeling very bitter unfortunately.
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09-01-2010
02:30
I take Starflower oil. I get about 3 to 4 hot flushes a day but no sweats as such. So not sure if the Starflower is helping. I have been on Arimidex for a year and the pattern has stayed the same. Do not feel this freezing weather and have a 9 tog duck down duvet for night. Often have to kick that off. The nights are the worst I find and have not slept well since starting Arimidex.
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30-11-2009
05:30
A great response Bahon.
I am fed up with the media trying to make bc attractive! and profiting from it.
Daisy - I agree to feel positive you need good results. Unfortunately for a lot of us this is not the case.
Despite attending regular mammograms my bc which was lobular had travelled to 6 lymph nodes necessitating mx and anc plus i was Her2 and had 18 months of herceptin not to mention rads and 8 chemos all of which has left me with lymphoedema. All the articles and programmes in the world will never convince me there has been anything positive about this. I now have a fat arm and feel and am a lesser person than I was before.
x
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29-11-2009
09:45
I too would love to know how when wearing the gauntlet style sleeve which i have been told to wear you can cook, wash your hands after using toilet etc. When I told my physio that I fold glove back to wrist she said dont tell me. Apparently it does terrible things! But she had no suggestions as to how to wash hands otherwise. As a result I do not wear mine much and swelling has inevitably increased. Also I feel a sleeve is like advertising you have had bc. I may as well hang a sign around my neck!!
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29-11-2009
04:08
I am on Arimidex and finished chemo a year ago but have not been offered the swine flu vaccine. Only had general flu vaccine. Saw GP the other day and he made no mention of it.
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22-11-2009
04:31
Hi - Its either on the opening page or in the news section. Its entitled Breast Cancer patients wanted and goes on to say it is being conducted at Liverpool John Moores University. Its open to anyone who has had bc in the last 10 years. It is a long questionnaire covering every aspect it seems. I have printed off and will post.
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22-11-2009
03:45
May I draw everyones attention to a survey currently being undertaken by Breakthrough Breast Cancer into the effectiveness of BCNs. Something on which I am sure we all have something to say! The survey needs to be completed on line on their site by either tomorrow 23/11 or can be printed off and returned Freepost by 5/10. I hope I can encourage as many of us as possible to take the time to do this as hopefully it might lead to improvements.
My particular area of concern is the fitting of prosthesis about which I have never been approached. On everything I have to make the first move. i cannot understand why a voucher cannot be given to say the value of £100 to each patient who has a mx if they want to make their own arrangements. We could then choose one we liked and visit the suppliers direct ie like Amoena for instance who supply to the NHS anyway.
The same could be done with wigs which I believe happens in some areas anyway. I feel this would also save the NHS a lot of money as we could go to the specialists direct. What do others think?
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18-11-2009
01:01
Very many thanks for all your comments. It is very encouraging to hear of so many HER2 ladies doing so well and certainly has helped my confidence. I would like to have some sort of reconstruction eventually but am waiting maybe a year or two to see how things go. Also working very hard on losing weight and getting fit. I feel these things can only be for the good regarding hopefully a lesser operation and less side effects. Also hopefullhy it will help with my lymphoedema which i am also concerned would get worse as the result of another op.
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