Had my 1st appointment with onc, which has left me really confused. I have got a choice of treatments
AC Chemo - Rads - Tamoxifen
OR
Rads - Zoladex - Tamoxifen
I have been up all night reading different posts and various leaflets, still none the wiser. How do i know which is the right treatment for me? Onc said they both have the same results so its up to me to choose.
Cant seem to find much info on Zoladex injections and side effects is there anyone out there that can help with this.
cant help with the injections but am due my last chemo in a couple of weeks. it hasnt been too bad just mainly tiredness which has crept up over the weeks. ive got a mx recon and rads to follow.
youll get more help im sure from others who know. or maybe call the helpline.
Hi Annette. I’ve had different treatment to you. Chemo ( which I’m still having) to be followed by Mx and rads. Sorry I can’t advise you but I think it’s really difficult if they leave a choice up to us when we’re totally in the dark about these things. I hope someone else can help you.
Good luck.
Polly x
Just wanted to quickly say, as the others have, that if you’re feeling uncertain or confused about things, the Helpline are great offering support and information so do give them a ring if you get the chance.
They open this morning at 9am and the number is 0808 800 6000.
HI Annette,
eee dear me, as if you didn’t have enough to think through…I am posting cos I am a patient rep on something in the NHS about SHared Decision Making ie patients not just being told what to do and not being given enough info…your situation seems to be at the opposite extreme of leaving the decision entirely up to you.
I had a choice in my treatment between different chemo regimes, but I managed to have a gut feeling about what I wanted and I managed to steer the Onc into a bit of a -“this might be a bit better for you” position.
Please don’t feel you have to decide alone by Tuesday -
have a chat with helpline and/or BCN and also if you are unsure when you go back on Tues thats fine - go into your appt saying you ar still unsure and ask to go through the benefits and side-effects again…you can always ask for a coffee break and then go back into Onc a second time and agree a way forward…
please do whatever is good for you, bw Nicola
Thank you Louise & Nicola CM and others
I took your advice and spoke to a lovely lady on the helpline, i feel so much better now i know the facts etc. At the moment im 90% sure that i will go down the Zoladex route as it is targeted at the cause ( im ER+ and PR+) i know that no treatment is going to be 100% effective but i feel this will be better for me and my circumstances, (hubby has terminal illness). And god forbid it does come back at some point i will be able to have the chemo then if required. The lady on the helpline did say to ask why he thought i had to have chemo as going through my details she and her collegues said they did’nt feel that i fell into that catagory. So will ask him on Tuesday.
Again thanks guys dont know what i would do without this site its great.
Annette
Can’t imagine what you are going through all I can say is I had zoladex for 2 years + tamoxifen I did have hot flushes but to be honest it wasn’t too bad for me??? The plus side …no periods?? When I stopped taking them my system kicked back in and I went on to have 2 children…sorry I can’t be of more use??? Jeanette xxx
Hi Annette
I was in a similar position to you, or it seems to be. I had a 2cm grade 2 tumour plus a bit of DCIS, er+, pr+, HER2- and I was 50 at diagnosis (age seems to be an important factor).
The onc “offered” me chemo but said it was up to me, he wasn’t necessarily recommending it. Very helpful! I was very upset at the thought of chemo and the impact on quality of life, especially since it seemed to be overkill for my situation, so I said no to it. Only then was I offered Tamoxifen + Zoladex as an alternative. [I have since discovered that this is the approach recommended in the NICE guidelines - only offer Tam + Zol if the patient rejects chemo. Not fair, why can’t they explain the alternatives up front?] At least you had the options explained together.
Because I was so unhappy at being expected to make this decision I asked for a 2nd opinion, went to see another onc who was much better at explaining things, and she said she wouldn’t even have mentioned chemo for my tumour, she thought that Tamoxifen on its own would be fine. So I then felt much more confident that I was making the right decision to reject chemo. I decided to go with the Tam + Zol as a compromise between the two different opinions, and with a better likely outcome.
Don’t be rushed into making a decision, it’s your body, you need to take the necessary time to decide, including seeking a 2nd opinion if that helps.
As to the SEs of Tamoxifen + Zoladex, lack of a decent night’s sleep is the main one. I had a few mild night sweats early on but no daytime hot flushes at all.
Sorry this is so long-winded but I hated being faced with that decision, it felt so unfair and I sympathise with your predicament.
Sarah, thanks for your reply.
I have now seen onc again and have decided to go with 20 rads and 3 years of zoladex as well as tamoxifen, i should start in 2 weeks. I feel so much better now the decision has been made it was awful having to choose.
Can anyone tell me where i get the aqueous cream from is it hospital or do you have to buy it yourself, or on prescription
Annette
You can get it on prescription, so you won’t need to pay for it. There are other moisturising products you can use, but you need to speak to your radiotherapy people to make sure they’re happy with the ingredients. I have a feeling Diprobase is also allowed if you don’t like the consistency or smell of aqueous cream, but do check first. Other people suggest Aloe Vera gel, but again make sure you get it checked before you use it. I think they’re checking that there are not metals in the cream, as quite a lot of them have aluminium salts in them.
Glad you’ve been able to make a decision, it’s such a hard thing to decide but I hope it means you’re able to continue with all the other stuff that’s going on in your life.
Hi, never thought of getting a prescription for aqueous cream but a massive tub of it was less than £2 in the supermarket although I did invest in some expensive Penny Brohn Radiance gel too. No idea what I’m meant to do with it but I’ll slap on anything that may help. Must read up, I’m due to start rads in a couple of weeks x
Annette, I had an 8mm e+p+ her- bc plus DCIS and am having similar treatment to you 20 rads and tamoxifen but no Zoladex. Tamoxifen isn’t doing anything to me Side effects wise so far and rads doesn’t seem to take much time out of a day even though it is a bind hauling to and fro and is no doubt tiring. Sounds a lot better than chemo in its SEs. SOunds like we’re doing this at around the same time. If I get there ahead of you, I’ll let you know how its going x
Aqueous cream is something like £3 or £4 for a 500g tub in Boots, but there are some opinions that it can thin the skin over time. As ChoccieMuffin suggested, Diprobase is another option, which seems to be preferred by physiotherapists and is similarly cheap.
Good luck with the Zoladex plus Tamoxifen, let us know how you get on!
Best advice I can offer on the Zoladex is to ask them to give you a local anaesthetic before the injection, and make sure you hold some cotton wool firmly on the site of the injection afterwards to avoid bruising. I started off with the monthly injections until I was sure I was OK with it, now I have the 3 monthly version.
Sarah - Why do you need local anaesthetic, does it hurt that much?
Is the cream very greasy?
Mary Grace - Im not looking forward to the journey to and from hospital everyday its a 50 mile round trip for me, hope my appointments miss the rush hours . But it has to be done
I have got 2 good things to look forward to two of my children are having babies in may, cant wait. Although at 47 years old i think i had better tell my kids enough is enough now, I have 4 kids and will have 14 grandchildren by the end of May.
All the best to you all
Good luck with your treatments
Annette
My hosp gave me several tubes of aqueous cream before i started rads.
I had 15 months of zoladex and tamoxifen together (now just tamox as had ovaries removed instead of continuing zoladex). I have only ever had a few mild flushes each day. I never had a local aneasthetic before my zoladex, it didnt really hurt, more like a pinching feeling. Sometimes i would have a huge bruise and sometimes nothing. Remember everyone is different so dont be put off by negative comments.
I have local anesthetic because I’m a wimp and my sister-in-law said when she had it without the local it hurt. My GP routinely does it with a local so I’m happy to go along with that, but I know many people don’t bother. Like lolly sometimes I get a huge bruise, other times next to nothing. As I said earlier, if you put pressure on it immediately afterwards and hold it there for a few minutes, that minimises the bruising, same as you would do after having a blood sample taken from an arm.
Diprobase cream absorbs into your skin quite well and is not particularly greasy. I also use it as a skin lubricant when I massage my scars.
Dont know how to cope now, my poor hubby lost his fight for life on wednesday so now i have got to try and cope with this bc crap alone, life really sucks at the moment
Annette, what can we way? “Sorry for your loss” doesn’t touch it, but I AM truly sorry for your loss and can’t begin to imagine what you’re feeling right now.
We will all be here for you for the BC stuff, but sounds like you could do with some love and comfort for the other bombshell you’ve been dealing with. Perhaps the Helpline could put you in contact with others who have lost partners? I know there are one or two active posters who have lost partners, I hope they will be able to come along to offer their special support.
Annette I am so very sorry for your terrible loss. Do you have family or friends nearby? And have you identified a local thread on here? Perhaps if any members of this forum live near you they may be able to help you feel a tiny bit less alone. Again I am so, so sorry. Much love to you xxxxx