Hello all.
I was diagnosed with BC last week and still in shock!, I found reading all your letters and comments about your treatment etc very helpfull to help me make certain descisions.
I spoke to a lady yesterday that told me about drinking Aloe Vera juice and using the gel while getting Rads treatment, has anyone out there tried this and if so does it help?.
Keep up the good advice to others like me who need all the support, you who have been there and done it all before us.
Carol x
Hi Carol and welcome, though sorry you have had to join us.
I was dx last Nov - had mastectomy, full node clearance, followed by 4 x chemo, 20 rads, 3 x chemo and currently waiting to start herceptin.
Hopefully you will continue to get a ton of good advice on here - I know I did going through the various stages - and still do now.
With regard to the gel and radiotherapy - dif health boards appear to have different theories unfortunately - I too had read on here about using it - but when I went for my planning session (at Edinburgh) was told categorically not to use anything, and that they would give me cream when they felt necessary. As it was, my skin held up fine throughout the radiotherapy and I wasn’t given any aqueous cream till after the 20th session. Used it for a fortnight and had no problems at all apart from some slight peeling, like sunburn.
Hope everything goes ok with your treatment
Margaret x
Hi Carol,
I have also been recently diagnosed with BC - I am going in toimorrow for a mastectomy and total node removal. I was diagnosed 8th May - had lumpectomy on 19th and the result wasn’t good. To top it all the wound got infected and so my big op has been delayed - have been taking extra strong antibiotics - I have to say that the delay has really helped me and my family to assimilate the huge shock that we all received. I too am very much a fan of the forum - the tips and advice - and the odd jokey comment - all help. I will be off line for a week or so - but will be signing in when I am back from hospital. Good luck to you.
Kind regards
Pam
Thanks to Margaret and Pam,
I work in a chemist’s shop and it’s so easy to just think this will be right for me, thanks, I now realize everyone has different skin types and may react differently, I think you so much want to be prepared for any eventuality!.
Be speaking to you soon, I am going in next Tues. for my lumpectomy.
Good luck Pam, hope all goes well with you.
Carol x
Hi Carol
Sorry that you have had to join us here on the forum. I was dx mid Jan 08 and had lumpectomy (grade 1 and 16mm) and node sampling 8 days later. I was in hospital over night and then back for final results a week later. I had no lymph nodes involved but did have an intermammory gland affected (I’ve always been awkward) - they still classed me as node negative and I was told chemo would not be required. I have since completed 29 rads sessions (at the Beatson in Glasgow) and was also told only to use the creams they supplied (aqueous creams). I did ask about using pitrock deodorant and they said that they could not sanction this as they had not tested it themselves … obviously they need to cover their backs. On explaining that I was only really concerned about deo for the day of my friends wedding they agreed that it would be ok to use it this once as long as I made sure it was washed off before my next rads session … as the wedding was the Friday afternoon and my next session was the Monday afternoon I assured them I would be in the bath in between.
I was quite lucky with my skin - it went pink in about week 3 then continued to go through various shades until by week 5 I was sort of pillar box red … week 6 I had some minor splitting on collar bone and in the crease of my armpit (the BC nurse said that as I am small chested this helped too) I used aqueous cream from about week 3 and had intrasite gel (again issued by the hospital) for the split areas - a week after I finished rads the splitting had healed and I was just a bit flaky for a week or so after that.
I’m now 4 1/2 weeks post rads and other than a couple of tanned areas my skin is almost back to normal (one boob looks slightly darker than the other).
Hi Lilacblushes,
Thanks for the reply, so glad there is somebody to talk too who has been there before.
Nobody has said what grade my lump is?, should I have asked?, will they tell me this on it’s extraction?, they did say it was about an inch long, doing my rads at the Royal Victoria Newcastle, they say I will need 15 doses with 2 free days at weekends, went for my pre op assessment yesterday and they said no Chemo so thankful for that.
I am to have 2 lymph nodes taken out as a precaution, maybe because the lump is very close to that area?, have you heard if it effects your arm’s mobility much?.
I started using Pitrock last week, can’t say I am a fan but will persevere if this is the only thing I can use, better than being ponggy I suppose!.
Keep on talking, it helps so much as I am sure you are aware yourself, great site, as you can access so much info from so many sourses.
Good luck, Carol x
I didn’t know what grade my lump was until after it was removed. I actually had a negative result on the biopsy so technically speaking the surgeon should not have taken any nodes at the initial operation stage - but we agreed that as the ultrasound evidence was pretty conclusive it was better to take some nodes rather than have me back in a week later for more surgery. Regarding the size of the lump - mine appeared as 22mm (so little under an inch) on the scans but when they took it out the final measurement was 16mm.
With regards to the arm mobility you will have some restriction on it at 1st - make sure you get issued with physio exercises ( I didn’t as there was a bit of a confusion as to who was ordering the physio when I was passed between the private and NHS teams). I found things like washing my hair and pouring a kettle were out for about a week but after that I could do much more stuff … part of my problem was that I am extremely right handed (I used to use to joke that my left hand was just there to make my arms look alike) and my lump was in my right breast - very close to the armpit too.
It’s also ironic that you just start getting the area back to normal and then they hit you with rads - that aggrevates the tissues and puts the arm back a few steps - just got to keep up with the exercises and be aware of what you are doing.
Hi Carol
The following link will take you to our factsheet about radiotherapy which may answer some of your queries about this treatment:
breastcancercare.org.uk/docs/radiotherapy_mar_06_0.pdf
Best wishes
Lucy
Hi Lilacblushes and Lucy,
Thanks so much for the gen and info, I am a very positive person and try just to get on with things but I will keep reading the mails as they are inspirational and so informative, I will be back on line to chat at a later date, it will excersize my arm to write!.
Love to you all, those who are just reading, to those who are suffering phsically and mentally, chin up, smile and be positive.
Carol x
Hi Carol,
I still don’t know all the technical details about mine either. My consultant just said it’s ‘early’ cancer and booked me in for a lumpectomy and sentinel node biopsy. Luckily the date he wanted for the following weeks couldn’t be arranged, so I had 2 weeks to come to terms with the shocking news!! I see the consultant on Friday for the pathology. He’s said that radiotherapy is the minimum treatment post-op. I guess any other options (chemo/hormone/monoclonals) will depend on the results.
I’m just over 2 weeks post-op now and have been back to work doing 1/2 days since Monday. Apart being a little leaky from my armpit scar and having antibiotics as a precaution, I’ve healed really well (in my opinion!!). Take arnica tablets for the bruising…I’ve had much less bruising from the op than my core biopsies when I didn’t take them and I have no visibe bruising left now. Had a bit of fluid swelling under my armpit scar but it seems to build up overnight when I don’t move much and then go down in the day when I’m more active. I didn’t have much problem moving my arm around, even immediately post-op, though I have been doing the exercises religiously (you can download the leaflet from this website or ask your breast care nurse for a copy).
Good luck with it all…
Sarahxx
Hi Sarah,
Me too, just coming to terms with all the jargon etc!.
I have planned a couple of weeks off, my firm is absolutly great with me, I can go in on light duties when I want to return, it makes such a difference working for people who a willing to help you along the road to recovery.
Nice to hear you could move around shortly after the op and thanks for the tip about the Arnica, I will get some in.
I was all set in my mind to have a lumpectomy, I bumped into an old friend who had a Masectomy 10 years ago, she frowned when I told her about having the lumpectomy, to my mind BC has taken giant leaps in10 years, I lost my best friend to it 25 years ago, I feel if the treatment today had been around then she would still be here!.
The information on this site is invaluable, the downloads, people chatting, support etc, you never feel alone, it’s a great help to so many.
Stay well Sarah, you sound a very positive lady.
Carol xx
Hi Lucy,
I have chosen to have a lumpectomy next week, I met up with an old friend who’d had a Masectomy 10 years ago, she said it could come back in the same breast, is this true?, I am sure the nurse at the clinic said it would never come back there because of the radiotherapy.
My mind is all a tumble now!!!, have I chosen right, my lump is only about 1’’ long and quite slow growing ( I think).
Kind regards,
Carol
HI Carol
I had lumpectomy in April and consultant is very pleased and said there is a very high chance of it not coming back.
You have to do what is right for you,I went for preservation, and really glad I chose that option.
I think it is best to listen to medical advice if unsure and not ‘old wives tales’ Your friend prob meant well but treatment has come a long way in 10 years.
Good luck with op
Take Care
Mary
xx
Hi Mary,
Thanks, I too feel the same about presevation, my friend just wanted it ‘‘gone’’ and had her breast removed, as I said 10 years on BC survival chances have improved vastly.
I am at the pre op jitters stage, don’t know which way to jump for the best result, I am very brave up front for others but starting to crumble inside as the day draws closer.
Thanks very much for the advice, I appreciate your comments very much.
Good luck to you too, stay well.
Carol xx
Hi Carol
I was originally offered a lumpectomy and was told that a lumpectomy with rads was about the same as having a mastectomy about 5% chance of return. So I think you have made the right decision. I ended up having a mastectomy with immediate recon, as my lump was quite close to my nipple and it wasn’t worth the risk of not getting it all. You could always have a mastectomy at a later date if it did return.
Have you found out what grade it is yet?
It’s quite overwhelming going into hospitall, but you will be in good hands as this is quite a common op these days. I cried more when I came out of hospital than before, I think the reality starts to hit you a bit more when you come home.
Hope your op goes well will be back on to see how you are doing.
Stay positive.
love
Ann
xxx
Hi Ann,
Going for my op Tues, I will find out the grade and size then I suppose, I still have my mind set on a lumpectomy, nothing changed there and as you say if needed I always have the option for a masectomy later if needed.
I am sure you are right about crying more when you come home, it’s probably a mixture of relief that it’s out and waiting for the results to come through.
I will let you know the outcome later in the week, thanks for the support and stay well yourself, take care.
Love, Carol xxx
Good luck for the op on Tuesday and the results too. Will be thinking of you.
xx
Hi Caltech, Margaret and Lilacbushes
I had my op on Wednesday last week - mastectomy and total node removal - I was discharged yesterday (Sunday). I have a good movement in my arm - am able to wash and dry hair with hairdryer!! Given a ‘boob-tube’ elasticated thing with a velcro fastening - it does wonders to keep everything tight - I feel more confident with this on than with a bra! Was given a ‘boob’ to fit into my bra on discharge - went to Tesco after discharge - and I was fine! I am waiting for the ‘hit’ of anxiety, emotional and physical trauma - but up to now it hasn’t hit. I don’t know whether I’m in denial !! For me - I have been diagnosed with breast cancer - the chest exray and bloods to check my liver and kidney functions have all come back clear and am waiting for the pathology report and treatment plan which I will get on Thursday of this week. I know that I will likely have to have chemo and deffo for radio - but hey - I’m still here - I still function the same - sleep, eat, drink etc - so I will accept the fact that I haven’t had the ‘hit’ yet - but also am very aware that it may still come. I echo a number of ladies who say that this site gives them so much comfort - I have found out so much by reading the discussion forums. I have also ordered a load of brochures from the publications section of the site - all very informative - I think the more I can get to know the more I will be prepared. Like last week, I read ‘Top tips whilst on Chemo’ - a great read for all of us - I will be getting some fresh pineapple, a baby’s hairbrush and a softer tooth brush - please keep the information coming. I look forward to hearing from you.
Pam
xxxxxxxx
Hi Pam, Lilacblushes, Maragret and Anne,
Hope you are all well and feeling much better this week.
Had my op last Tuesday, all went well and I feel ok, I have pain from my underarm more than anything, all the nerves are jangling in my arm and I thanked god last night for whoever invented Co-Codamol!.
I too have been working my arm, excersizing it every day, can wash and dry my hair too, thank god it’s short though and does not take any drying!.
Waiting for next Monday to hear about the MRI scan, results and treatment plan, the Consultant surgeon said all was ok but not much more at the moment until he gets the results.
The waiting is the hard part, everyone says how great I look but they should see me from the inside!!.
I feel I have argued more with my hubby than anything these last few days and this is not like us at all, we are not the perfect couple I may add but we have a good solid relationship but I feel it’s being tested at the moment, it’s probably the waiting that is doing it, I am normally quite placid but at present I seem to have ‘‘raging bull syndrome’’.
Like Pam, most days I feel ok, I do have some dark times but try very hard to push them away, it is difficult though.
Stay strong ladies, love and support to you all.
Carol xx
ooops and Mary, sorry I forgot you,
Hope you are well.
Love, Carol xx