not sure how all this works!! You have your diagnosis after numerous biopsies. Then you have your op (lumpectomy in my case). You then go back for your histology and relevant treatment summary. Then (in my case) rads and an oncology appointment. I have now received an appointment for a surgeon in June. So - its 5 weeks of rads and Tamoxofen for me. And then after the rads finishes what? Just the June appointment with the surgeon? Goodness this is confusing and ongoing. Like I said before I am feeling very positive as my results were very good - grade l - no lymph nodes involved, no cancer in breast blood vessels etc. Am I jumping the gun and thinking its all not that bad or am i kidding myself? Perhaps self-denial. Maybe the shock settles down and becomes the norm. But I suppose its a journey for us all and as time goes on it will, hopefully, get better. My philosophy for the day, xxx
Hi Springblossom
Hopefully you’re right. You’ve got all the test results back from what they removed during the lumpectomy, so there shouldn’t be any nasty surprises further down the line. I’m surprised it’s 5 weeks of rads for you, it’s normally 15 treatments done as 5 days per week for 3 weeks. Maybe yours is alternate days instead? Rads can be tricky for some people if they get a bad reaction, I was lucky and had very little, hopefully you’ll be lucky too. Medium term (I’m now nearly 3 months post-rads) the breast tissue is still stiffening up but I can ease that off quite easily with exercise, long term I’ve yet to find out.
Best advice I can give now is to do lots of arm and shoulder exercises so you start rads with max movement, it will make it easier to get into position for treatment, and to maintain mobility afterwards. Lots of aqueous cream applied in the few days before rads to get the skin nice and moist, then keep applying it throughout rads.
Sarah x
hi cheshirecheese
Thanks so much for your advice. you are obviously a few months down the road from me. i think different surgeons and oncologist do things differently. For instance, I had 13 nodes taken even after I had the nuclear medicine. Whereas another surgeon at the same hospital took only 5 in similar circumstances. What do I know, we are just putty in their hands and have to go with what is advised to us. Maybe they are doing 5 weeks rads because of the surgeon I had.
Anyway, as i go along this road I hope I can help, advise and support on my experience and knowledge as it so comforting.
p.s. Am using the aquarious (spelling)- cream
Hi Springblossom,
I know we have messaged privately but posting a reply here in case it is of use to anyone else.
I had the same query as to what happen at end of rads?..as in do I just walk out and wait for another lump to appear/no news is ggod news?
After surgery it was explained that I will have annual appointments with breast consultant and Onc but 6 months after each other so get seen by someone every 6 months for next 2 years. I’m going back to see surgeon for the first time 3 months after op (but I’m a private patient) and then Onc 6 months after that. Having said that after talking with the Senior Radiotherapist and voicing my view that after the care received at the diagnosis/surgery part I felt this stage was very impersonal, dehumanising and a little degrading (meat on a slab type effect)I have been booked in to see the Consultant Onc a week before the end of treatment.
I was also initially told 5 weeks of rads, but when I got the actual schedule of dates it worked out at 4.5 weeks (21 sessions)…the last 8 being a “boost” (double dose just to tumour site) with a break of 4 days due to Christmas weekend and bank hols…just 2 sessions left after that
I’ve been told not to use aqueous cream within 2 hours of treatment. Just had number 10 today and starting to see the outline of the area being treated. Having more discomfort from nerves rather than skin reaction… “going into spasm” (apparently)…numbness and tingling… plus when on the table having treatment can feel it going down my arm like an electric shock…been told perfectly normal due to fact they are also radiating the lymph gland area (even though I had clear nodes).
I was given a prescription for (and started taking)Tamoxifen 2 days after final results (which was 2 weeks after surgery) didn’t wait for rads to start.
Bettina
Hi All,
It seems that everyone has different treatment depending on where you are in the world!!! or which onc you have, my prognosis was also ‘good’, and was initially told 15 sessions of rads, but when I had the consultation with the onc he told me it would be 20 sessions, just had number 12 today so am at similar stage to you sebflyte, although I finish xmas eve 
I was told I could use aquaeous cream anytime before appt. as long as it is rubbed in, my skin is holding up pretty well, it went pink quite early on but hasn’t got much worse - so although not nice to use it must be doing something, also springblossom I was told to use ‘simple’ soap - again its not very nice (no smell) but if it helps the skin then I’m all for it! I agree with you sebflyte about the tingling, and general soreness of the breast, I was also surprised at the large area they cover, I thought they would just zap the area where the Bc was - it’s a massive learning curve this BC malarky!!!
Anyway hope your rads are going ok Sebflyte, and hope your rads go ok springblossom when you start them!
Take care all x
I wsa told to start taking Tamoxifen 6 weeks after op and I have 15 sessions of rads( just back from session 9 - 6 more to go) no soreness yet but am using loads of the horrible aqueous cream. I too was advised to use simple soap which I do. This week I have started having pains in the breast after treatment and sometimes in the arm but told this was normal. Saw onc on Monday who said I would be sent appt for 3 months time - as you say that feels a long time but I suppose they know what they are doing. I thought I might attend the local breast cancer support group then I could get reassurance if something was worrying me. Has anyone else been to one of these?
I was given Tamoxifen as soon as saw the Onc and am going to have 15 sessions of rads starting 20th Dec (no lymphs involved). I’ve been told to use aqueous cream as much as poss and simple /unperfumed baby soap etc (I do anyway as get excema). I can use anything else I like as long as radiologist sees it and checks ingredients. I see the Onc a weeek before rads ends and then again but have firgotten when! I am going to go to local breast cancer support group meeting after Christmas, I think as long as fits in with work. Did you work through rads?
Wendy
Just a note about unperfumed/baby products/aqueous cream.
I was given a tube by the hospital and told not to use ANYTHING else not even aqueous cream that I have in the house for son’s exzema which was prescribed by GP. I did ask why…I mean aqueous is aqueous (water) right?..was told that they want to ensure 110% that there is absolutely nothing else in it.
Got told a tale about one woman who had bad skin reactions and they couldn’t work out why, based on what she said she was or wasn’t using…turns out after chatting in the waiting area before each session to other ladies, the chinese whisper effect kicked in…a discussion about feminine hygiene spawned a people’s consent to use baby wipes!..just because it’s safe for a baby does NOT mean it’s ok for your skin with rads…it’s all to do with the metal content of the chemicals…these tiny particles get picked up and intensify the radiation and therefore the skin reaction…goes for deoderant too. Anti-perspirants are a complete no, no.
I would urge anyone to check with the rads staff BEFORE using anything other than aqueous and not just go on recommendations from other ladies on sites like these.
Re. follow up appointments/checks at end of rads it was explaned to me that ther is no point as nothing to check against, as lymph nodes clear and tumour removed completely. The rads given were as a precautionary measure against recurrence so no baseline such as in cases where they need to shrink a tumour. I also asked about scans etc, but told no point any cancer cells would be too small to be picked up by any CT, CAT, PET, MRI scan etc etc. If it wasn’t for the fact I’m a private patient I’d be inclined to think I was being fobbed off with no scans due to financial constraints, but once the in-depth stuff was explained I can see the logic.
Good luck to everyone having/going to have rads.
Bettina
p.s. I didn’t work through rads…was signed off by GP from diagnosis through 'til early Jan when rads will be finished
Of course people should take the advice of the radiographers re- cream, I was told aqueous was fine, they don’t hand out any cream unless you get a reaction and can’t cope with it, but it does help to read about what has helped others on this site, but of course everyone is different and will react to treatment in different ways, as far as I can see aqueous doesn’t contain any metals, of course most deodorants do so should be avoided at all costs.
wendy - I am not working during rads, an easy choice for me as I am still on full pay, as I haven’t needed chemo, so have only been off work since Oct, just had number 13 today, and am beginning to feel really shattered, so not sure I could have coped with work as well.
Smiley - I haven’t attended any support groups - this site is enough for me at the moment, but you go for it girl, I’m sure they’ll be very welcoming.
x
I agree with Bettina that you shouldn’t use anything unless the radiologist sees it and checks ingredients. I am moisturising before hand, however I wonder if I am doing enough if you are all surprised about the large area! How much body should I be moisturising? Have taken to keeping it in the airing cupboard much warmer in the morning!
Wendy
aqueous cream or no aqueous cream, that is the question? I would imagine that as long as we are not alergic to any of the ingredients of the cream it must be the same for everyone. It stands to reason that the area must be moisturised so why would it depend on the oncologist. There is also a Radiance gel/cream made by Penny Brohn. I wonder if this is any better. It costs a lot more for a lot less (not that that matters if it helps.) I for one am going to use the aqueos cream.
Have been to the GP today for wound checking. Nearly a month since my lumpectomy. Even though there is slight discomfort, my nipple feels very sore to touch and when im out am afraid someone will knock me on it. But a bonus is the arm is not so numb and the prickly holly feeling under and down the arm is subsiding, probably due to doing me exercises. There is a silver lining!
By the way does anyone know when my Tamoxofen will start or whom gives you the perscription for it (although eventually GP for repeat). And why does it take so long to start rads, I suppose we have to wait for wound healing? Take care all and I hope my daft questions help others. xx
Hi Gwendolyn,
The area that I have radiated is 17cm x 9cm…not having armpit radiated but the area just skims my armpit and the top border is not a vertical line…it slants up from armpit to a point (up towards collar bone). I’ve had number 12 of 21 today…couldn’t see any outline of area being treated until a week ago. Just today beginning to feel “tender” mainly on the areola area and the under part of breast is very warm (so you may prefer to put the aqueous in the fridge half way through treatment rather than the airing cupboard:-) )Breast in general is slightly larger (feels fuller) than the other non-treated one.
Not sure if already mentioned elsewhere but no shaving of armpit either and good idea to wear only cotton garments directly next to it and unless you are a masochist no bra either.
Bettina x
Hi Springblossom,
Think we were psoting at the same time.
Rads can’t eb given too soon due to wound healing…they want it to hell well before setting chnages off again with the radiation…as I posted mine started to swell now so can see why that at the same time as swelling post surgery should be avoided.
Research suggest so long as rads no later than 7 weeks after surgery no difference in effects/success rate.
In our cases Tamoxifen is the systemic drug especially as we are not having chemo …logic would suggest the quicker it gets into your system the better…so no reason you can’t start it as soon after surgery as possible. My inital prescription was given by ONC which is the norm but it seems that most people see ONC for first time at the same time time they go for Rads planning (which on a straw poll as allowing for tissue to settle is usually around 6-8 weeks). Whilst this was the case with me…I saw my Onc to sign consent forms and arrange when to go in for Rads planning… this was just 2 days after final results from surgeon. I then went back 2 days later for the tattoos and planning/scan etc then rads actually started 19 days later, by which time I’d been taking Tamoxifen for nearly 3 weeks. (so far so good on the side-effects and have had 2 different brands…but I’ve been told they can kick in after 6 months…
Bettina x
Thanks for that. I have an appointment with my ONC on the 5th January when I assume I will be getting my perscription for Tamoxifen or at least informed of this. I think different NHS areas do things differently. I have befriended a lady just finishing her chemo and she waited weeks for her histology report whereas I only waited 2 weeks and we are in the same area. I dont think a few weeks here and there would make that much difference, or would it?
I’m sure if there was any risk by not taking it sooner the Onc’s would prescribe it earlier. But, just from a piece of mind point of view for the patient, I think if I have to have it why not get on with it. I suppose in theory if something was growing in that period before starting Tamoxifen then the dose when it does start would shrink/get rid of it anyway…that’s the theory…but one thing I have learnt about this “C” thing is the only predictable thing about it is it’s unpredictability.
I agree there are so many differences in protocols between NHS trusts …and I really think that is wrong. But the fact that I got given it so early suggest why hang around…but I guess it’s the numbers in the NHS game again…they won’t want to give every patient that extra appointment before Rads planning…for reasons of time and money
I think you have to trust your gut instincts in all of this…I did when I found the lump and have continued to do so every step of the way…ask questions then listen to your instincts as to whether it all makes sense or not.
hi sebflyte
Have had a word with my bc nurse today and she has assured me that it is ok to leave my treatment for the onc. In other words my perscription will be decided at my appointment on the 5th January. She isnt even sure how many weeks my rads will be as that was just an estimated guess by the surgeon. Am still having healing soreness and twinges 4 weeks post op but my GP had a look yesterday and assured me this was normal. Was even enquiring if the surgeon could have left the wire in - paranoid or what? Gotta lighten up.
Hi Everyone,
Thanks for the size guide, Bettina. That is a lot bigger than I thought and mine will be about that as no node involvement either. Do you moisturise allof it? I may need a bigger bottle!
Springblossom, I had soreness and twinges 4 weeks post op and worried too but am ok now. My Onc sent the prescription to my GP and she issued it. My GP will send it to my local pharmacy, so all I do is go and pick up the pills. I reorder online so don’t have to see GP unless I want to and, as I live nearer to the pharmacy than the Drs, I am happy!
I had my first rads yesterday and will have a total of
15, ending 10th Jan (due to bank holidays.)
I asked onc about when to start tamoxifen, and was
told that there is some uncertainty about using
Taxmoxifen at the same time as rads.
Nothing is definitively against doing them at the same
time, but she would prefer I start Tam after rads finish.
(Tam binds to cancer cells by mimicking estrogen?)
Wouldn’t want anything to interfere with rads
eradicating the remaining cancer cells. BC nurse said
that one must assume that there are always some cells
after a lumpectomy, even with clear margins. She led
me to believe that rads is an essential part of getting rid
of the cancer, not *just* to prevent recurrence (which it
does do!)
Goodness gracious, I am so tired of wondering and asking
questions! I wish I could be one of those people that just
blindly accept…
Anna x
There seems to be so much conflicting information depending on where you are bring treated, its hard to take it all in sometimes ! I started taking tamoxifen about a week before rads started and just told to start it immediately, nothing was said about it affecting the rads! Something else to ask next time I see the onc x
Im just going to go with what is told and offered to me. This can all get very conflicting and add to the stress that we all dont need.I am feeling very normal (whatever that is). Just keeping warm and going with the Christmas theme. Dont feel ill at all and when the 5th January comes will commence this journey.