Breast Cancer Now Forum

Hi Charys,   Sorry am late to this thread... I had 5 booster rads in April and exactly the same as you was struggling for information. There is a study out there showing evidence that boosters are v effective in preventing recurrence in women aged 45 and under. (I had to search for this online, it's the Bartelink study here: http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(14)71156-8/abstract).   For the booster they just target the area around where the tumour was, rather than the whole breast and use protons which do not go as deep into the tissue (no one told me this beforehand).   For me, I was dreading the booster as I was tired and sore after my 15 sessions of normal rads, but the booster was actually fine. My tumour was on the side of my breast and they target a much smaller area, so it was a relief to not have my nipple zapped for the last few and I ended up with just a dark suntan circle where the booster went.   Now it's 6 weeks on and my breast is back to feeling and looking normal and has been for several weeks. Our bodies do spring back and IMO the booster was worth it for the additional peace of mind...   Lizzie x ... View more

I have Teva again now and all fine, I always ask my doctor to specify the brand on the prescription and my pharmacist has also made a note. For future reference, I also tried Mylan whilst Teva was unavailable and got on well with it. So at least I have a backup now. (I did not get on with Actavis or Wockhardt).  ... View more

Well done Catherine, you're nearly done 🙂 I finished 1.5 weeks ago and am still getting some weird shooting pains and discomfort deep in my breast where it was "cooked" but everything is now so much more comfortable than it was. I have been surprised how rapidly my body has recovered after rads. My boob is now rocking the suntanned look (much better than bright red), which would be fine if the rest of my body matched... perhaps I need to book a holiday!   Even the cording in my arm has calmed down an awful lot. But will still go ahead with a physio assessment on that one. It's my right arm and I'm right handed.   Lizzie x ... View more

In case anyone else has the same issue with Teva unavailability, I have been on the Mylan for a few days now with no additional side effects. If anything I have had fewer hot flushes, but it is difficult to judge as I have also been taking supplements to try and calm these down.   Thanks for your help all, this forum is so useful. ... View more

Hi Lizaki, yes I have had 15 rads and 5 boosts owing to my age. Last session of 20 today. Am happy to chat to you about it if it helps. I looked up research beforehand to decide whether the additional boost was worth it and concluded it was. It can be v effective in preventing recurrence, especially in anyone under 50. To be honest, it has been easy as the 5 boosts are just to a small area where the tumour was. The worst part were the last few to my whole breast. The radiographers have been brilliant at making sure I'm OK and comfortable every day and giving me creams etc as needed.   Happy to chat if you want to know anything, just ask.   Lizzie (from the March board) ... View more

Hi D, keep moisturising. You may be lucky and it may not strike. Many people sail through. For me nuclear boob struck at around day 8 or 9 with a hot, itchy pink rash. The worst affected was my nipple, which got v sore for a while and needed calming down with creams and gel pads. (I know though, I should be grateful to still have a nipple...)   I have my last session of 20 rads today. As the last 5 are a boost to just the area where the tumour was (side of my breast), the rest of my boob is already feeling the relief. It has calmed down from bright red to a dark dark tan, looks as though I sent it on a Caribbean holiday without the rest of my body...      ... View more

Congrats on finishing Ali! 🙂 So cool, I love the idea of the bell to ring on the way out. I am now 18 down, just 2 to go... I met a very anxious lady going for her first session today, it was nice to be able to reassure her. ... View more

Hi Catherine, the Flamazine is prescription only, used to treat burns. Worth asking for but only if you get really sore and need it. Hopefully you won't... the gel pads are also something the hospital hands out. The only cream I have bought has been aloe vera gel and calendula cream, both are great. I've been "borrowing" my son's eczema emollient in large quantities and also have bio oil but hadn't used it since starting rads as it is slightly perfumed... however, I'd say if you are OK with it so far then stick with it, it's great stuff for scars etc. I plan to switch back to it again soon too. I'm at RUH in Bath. They have been great, it's a nice friendly team there. But I look forward to not seeing them again after this week. ... View more

Thanks for all the help Jill and everyone, it's reassuring to know that things should start looking and feeling better soon (the Flamazine and gel pads are already making a difference, also I'm finding calendula cream very soothing). The whole radiotherapy team was peering at my boob this morning to see if they could come up with more recommendations of things to try (bless them they are so helpful!), but I'm feeling very positive now that I only have 3 sessions to go, it has gone really quickly.   I'm only flying a couple of hours to Europe so guess I should be fine. I will try to remember to pack my flight socks too. It'll be so nice to escape somewhere...     ... View more

Great, thanks Jill. Fingers crossed, 2 weeks would be great. No, I'm not going anywhere hot just a city break ... View more

Congrats Ange on finishing and excellent news Ali that you just have one more session. I'm on my boost rads now, just 4 more to go so I will finish on Friday. A glass of something is planned. (LOL at you Jill burning your bra... I might consider that too! I'm sure the kids would enjoy it)   I can totally relate to feeling sore. The whole area for me is dark red and I have an angry-looking rash, my nipple has cracked slightly. I am slapping cream on constantly and using Flamazine and gel pads to ease the symptoms. It's not a pretty sight... And my arm is still painful when I straighten or raise it.   I know it will take a while to get back to normal, but I am trying to stay positive and really focus on the "normal" again. I have a new job starting on 1st May and hoping to be well enough to throw myself fully into that. I have friends that I want to meet up with. And I am looking forward to my life not being all about hospitals and appointments for a change...   No one can really understand this journey unless they have been through it. But I think we should raise a glass as we reach the end of treatment, perhaps another once we are finally starting to feel fully normal again.    Lizzie   PS - Can anyone tell me how long it took them for their nuclear boobs to return to normal after rads (i.e. not sore and normal-ish colour?) Also, does anyone know whether there are any restrictions on flying? I may need to travel in 3 weeks' time. Thanks. ... View more

Hi Aggielou,    Sounds very normal to me. I'm still getting twinges and I had surgery beginning January. Did you have a sentinel node biopsy at the same time? For me the recovery from that has taken the longest. I have a lot of nerve pain and twinges all the way down my arm. I guess everyone takes different amounts of time to heal.   I find that things vary still from day to day and I feel worse if I overdo things e.g. supermarket shopping, then need to rest up for a bit.   See your BCN if you are worried though, always good to check. Lizzie   ... View more

Conversely, I have olive skin and tan easily, but have had a tougher time than expected with rads and now limping towards the finish line... Maybe it is simply unpredictable. But the good thing is that the hospital has been great in making me more comfortable with creams / cool pads etc when I have needed them.   Try not to worry, the first few are easy and you will feel better for getting started rather than waiting around (the waiting is always the worst part). ... View more

I picked up my Tamoxifen today and the pharmacist has given me Mylan and Actavis. Can anyone offer any insight / recommendation as to which I try first? I have 3 Teva tablets left, they should be back in stock mid April... Thanks x ... View more

Hi Ali,   Don't jump ahead, and don't be scared. I have been taking it for 2.5 months now and yes, I have had some fuzziness, a few headaches, some hot flushes. But overall it has not been so bad and it has not taken over my life... as I have not allowed it to. There is a lot of help out there for overcoming side effects and some people experience very few. For me the benefits really outweigh the SEs - taking Tamoxifen is my best insurance policy against my HR+ cancer coming back. I need to do that for myself and especially my family. It has to be worth it. But I honestly wouldn't take it unless my oncologist and breast surgeon hadn't fully explained to me what the benefits were. Talk to your medical team if you are unsure.   Although we might complain about it on these boards, taking Tamoxifen really isn't so bad. Staring at the unopened packet and taking the first tablet are the hardest parts.   For many people, chemo is the biggest fear. You are already managing that one by the sounds of it. We are all amazing women on here, and stronger than we think. One step at a time xx ... View more

Thanks Jill, I think Mylan is one of the brands he mentioned he could get hold of. He has actually suggested giving me 2 different brands to see which one I get on with. But his suggestion was to take them on alternate days...? Sounds like a mad cocktain to me.  I was thinking of trying Mylan for one week and then swapping if I need to onto the other brand. Trying to explain hot flushes and aching joints SEs to an introverted male pharmacist that insists they should "all be the same" was an interesting challenge... but I think he ended up feeling sorry for me. (He called me "dear" when I mentioned I was in the middle of rads and could do without all this additional aggro...). Let's hope the Teva are back in stock soon. It's bad enough that we have to take them, let alone chase around the country trying to get hold of the tablets. ... View more

Love the tabard Ali, with the smiley faces 🙂 I have finished my 15 standard rads now so boost starts tomorrow. My rads team are great, they ask how I'm feeling and always try to offer help. So now I have Flamazine cream as well as gel pads and hydrocortisone cream. So although my nuclear boob looks red, spotty and angry, it is actually not feeling too bad... Looking forward to the long weekend. ... View more

Interesting, thanks Bibi. I had wondered about this too, it makes sense to give our boobs a little bit of TLC after everything they have been through. I will give it a go too.Did the German website give any helpful tips as to what to massage with? I'm thinking aloe vera gel, almond oil, bio oil etc might all work...?  ... View more

Hi Ali, welcome, it all sounds really familiar to me. I have completed 14 of 20 rads now and over the weekend my boob went from completely fine to nuclear - red, an angry heat rash and swelling that affected the nerve endings in my arm. It has also coincided with some huge hot flushes from the tamoxifen (I am 2 months into taking that too) and brain fuzziness.    I did feel very sorry for myself yesterday, but the radiotherapy girls have been so lovely. They gave me some hydrocortisone cream which has soothed things and also some cool gel dressings that I can keep in the fridge and put in my bra if I feel like I need to. They also said cool savoy cabbage leaves in your bra help, so might be worth a try. (I know they are good for breastfeeding mums and mastitis). My aloe vera gel also feels v soothing now especially straight from the fridge.   The only side effect I don't seem to have is tiredness.... So I took myself off shopping this morning for a bit of a pick-me-up. (Confusing radiotherapy and retail therapy, ooops!) Feeling a lot better for it too. ... View more