Hi. everyone.didn’t expect to have join this club.think it might be a good place to get things off your chest.I’m 52 and just had opp last wed spec says it is grade 1 and a tubular cancer,dont know how he new it was grade 1 before I had the opp,have been back for results only thay didn’t have them and have to go back, the nurse who removed my dressing said they had gone in twice,and got the scars to prove it,only now worrying why she didn’t know.On top of that my husband who had a double lung transplant 5yrs ago went in hospital the day I came out was having quite a few problems, which is why Ive come on here as I dont want to have him worrying even though he is very supportive.The spec says that if you are going to have cancer this is the 1 to have,which sounds promising.has anyone had this type and what treatment did they have,also how long am I to be off work missing the crack I have with work mates.
Hi
Welcome to the place no one wants to be! Hope your husband is improving.
There is another thread on here about tubular cancer - breastcancercare.org.uk/bcc-forum/discussion/19696/tubular-bells-i-mean-cells/#Item_5
which will give you some info.
I think (?) that I have tubular cancer (must check when I go for the results on wednesday) and it was only 6mm so not feelable. I was told when I went for the results of my biopsy that I would probably only have 5-6 weeks of radiotherapy (providing my node biopsy is clear!) starting 4 weeks post Wide Local Excision. I have only 1 scar (judging by the size of my dressing) as my surgeon burrowed up to get the node! This means that providing I am not suffering from fatigue, I should be back at work about 10 weeks post op - which was monday 28th July.
That reminds me, I must make a list or the questions I want to ask!!
All the best
Angela
Hi Walton,
Welcome to the Breast Cancer Care chat forums, I’m sure you’ll get lots more replies to your question with help and adice.
You might find it helpful to phone BCC’s helpline and have a chat with the breast care nurses here who will be able to explain to you in detail about the type of breast cancer you’ve been diagnosed with. The lines are open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm. Calls are free, on 0808 800 6000.
Kind regards,
Jo, Facilitator
Thanks Angela for that website.my con also said it was the best cancer to have.Do you know my house has never been so clean they say keep busy while you wait for results,Ive even got family wanting me to stay with them(lol)Mind you it is suprising how clean it stays with my OH in hosp.
walton
Hi Walton,
Sorry that you have had to join us.
I was dx with tubular bc in May. I had a WLE with SNB with a scar on my breast and one under my arm. I’ve just finished radiotherapy. Yes my surgeon said that if your going to have bc it’s the best one to have, but then I’d rather not have it at all!! I’ve to take tamoxifen for 5yrs but having a problem with that at the moment. I’ve still got to have all the usual checks as everyone else with this diagnosis.
Good luck with your results.
HI Toffee
Sorry what does SNB, orig they said there was 1 lump but gone in twice but neither is under my arm.Is there alot of side effects and do you have to have radio/t.Have you had 2 have alot of time off work as I’ve got a insurance claim to go in.
SNB is sentinel node biopsy - dont worry about all the abreviations, you will soon get used to them!
Angela
Hi Walton and Angela
Walton - I’ve replied twice on your thread in Have I Got Breast Cancer? - I keep finding out a bit more as I read more posts!! I had a routine mammogram end May, biopsy on 10 June and was dx on 18 June with tubular cancer. I had WLE and SNB on 3rd July. On 14 July I got my results - clear margins, Grade 1, no spread to lymph nodes and maximum ER+ (hormone receptive). I went back to work on 21 July (desk job) - but I am fortunate to be able to go home when I get tired - but I have been fine working 9 - 3 ish. I start radiotherapy on 14 August and I will work for about three hours in the morning then go for my treatment, but I intend to go home and rest after and my employers are supporting me in this. I think it depends what job you do and how flexible your employers are as to whether you are able to go back to work. Obviously if I start to get too tired I will either readjust or have some time off - it is important to give your body time to recover well - but my mind needs occupying too! Good luck! Looby
HI looby bet you can tell not very good on pc.I was wondering i work in a kitchen help to cook about 200 meals aday work 8hrs,from 6.30 am quite heavy work,but guess i’ll wait and see,thanks anyway.also OH in hosp
Hi all,
I too had tubular cancer grade 1, diagnosed in February 08 and had op March 3, I was also told it was the better one to get if your unlucky enough to get bc. I had 5 weeks of radiotherapy (finished in June), but unfortunately for me I have big breasts so had quite a lot of burns underneath my breast. Hope you don’t have to put up with these too. Yesterday I received the letter for my appointment to go on tomoxifan, which i am not really sure about, but will give it a go.
I am fine now, except for the skin seems so thin under my breast so take extra care at the gym as the friction and rubbing whilst running seems to make it worse.
Although this is the better cancer to have I am worried all the time that this dreaded thing is going to come back even though I was told they had taken all the cancer out and it was the better cancer to get? as anyone who has had tubular cancer had a reoccurance. Be good to know.
I went back to work 3 weeks after having my op, this was my way of coping with this, I have a wonderful job so that made such a difference.
Hi all
As I am a physio in a psychiatric hospital I get 8 weeks enforced rest!!
Angela
Hi all
mushroom - did you manage to work through rads?
walton and Angela - you both have physical jobs so I’m sure you need to be properly fit before you go back to work.
I don’t think there are any rights and wrongs - regarding work, exercise, etc - we just need to do what is right for us. It is just interesting to find out how everybody manages.
I am just not going to work - I intend to carry on canoeing as soon as my wound is OK!
Angela
Hi Loobytuesday (brillian name).
Yeah did go to work while having rads, my boss is the most wonderful boss you could find, she always said if you need time off then take it, but to be honest, coming to work was my escape from the dreaded thing.
One advantage for me I have an office job and this makes a big difference so not on my feet all day and not too physical. I did feel tired at times but most of my sessions were on an evening, (opted for this as advised its the best time to have radiotherapy as you can then go and rest at home afterwards), did feel quite tired at times though whilst at work.
We all have different and cope in our own different ways I suppose.
xxxx
Hi all,
Sorry I’ve been silent but computer broke down Sat and just got OH laptop up and running.
I haven’t worked since diagnosis as health professional so no one wants me there! Boredom now driving me mad and negotiating a phased return to work asap.
Finished rads Thursday. Very tired today but had quite a busy weekend. Boob sore and very itchy esp underneath and on nipple. Wake up stratching, not ideal. Cream in fridge and applying at least x3 daily. Just blouse on when at home. Apply fan to cool it down. I have a nap in the afternoon and if I don’t sleep I’m reading some wonderful novels. I sound a bit precious, don’t I but onc and gp ademant that I didn’t go back to work until all treatment finished.
Good luck to you all.
Hi toffee.
How many rads did you have,and who supplied you with the cream.how long have you been off work.
I’m also doing plenty of reading.I’m looking forward to going back to work as the girls at work are a great bunch,a laugh a minute.but it is a heavy job.
also running out of vases never had so many flowers since i had my daughter.
glad you are improving it gives me hope
Hi Toffee
Bed you are glad to finish rads!!
How much stuff did you need to get on prescription as I am asthmatic and have just got a new prescription for my inhalers. I dont know whether I should get a prepayment certificate in case I need to get stuff?
Angela
Hi Kharga
Sorry for butting in … just thought I could contribute - I have just started Arimidex and I will need 13 prescriptions a year (28 pills each) at £7.10 = £92.30 Prepayment certificate is £102.50. However… I queried with my GP if it is normal to prescribe this monthly and he said yes…(seems crazy to me when we’re going to be on it for 5 years and surely a lot of the money they make must go in admin charges) …but I queried with my sister who also has bc and she complained to her GP so he gives her a three-monthly prescription. Wish I had known this before. Might mention it next time I go. Looby
Hi all,
I’ve been off work since May, health professional, not my decision, onc and gp have been very strict. Hope to go back in the next few weeks. Can’t wait. Team I work with are great and I’m off to do my degree in Sept.
The rads folk provided the cream on the first day of rads and watched it’s use very carefully, offering me another tube 2wks into treatment. I had 20 zapps during all of July, with the final 5 to scar area. Tired today but had quite a busy weekend. always been advised to rest in the afternoon, after rads and now. Didn’t see the point during the first 2wks but started to do it and now worried that I will always need a power nap!
I’ve been taken off tamoxefen for 3wks as had some problems. Look under hormone treatment for the thread. I hope to try again very soon. Not everyone has problems. Therefore I haven’t gone for a pre paid prescription yet but it has crossed my mind. I would just say don’t be too hasty yet, plenty of time to deal with that.
Thanks, I think I will get my inhalers and a reciept and try and claim it back later if needed!
Angela