Everyone seems to have something slightly different........don't know want to make of it. 🤔
Just popped across from the May rads to read this thread as I have to have 5 boosters, however I am 55, so there goes the under 45 theory! I am having them because one of my margins was 0mm, so no clearance. I have been told by my radiography team that this is nothing unusual and the boosters are like an insurance reducing the possibility of recurrence. I am 3 down on my rads with 17 to go finishing on 9th June.
Good luck and hugs to everyone.
Thank you Lizzie, I have been put down for 4 boosters, I thought 5 originally....wonder why reduced by one? Maybe because I am 47 and not under 45 ? 😕 That is an interesting link, I shall indeed read it later on, as I do like to be well researched in all things going on. Ahhhha, very interesting about the protons too..... I was marked up today and I was wondering how and what would do this oval marked area...now I know.
Thanks for taking the time to reply , I really appreciate it.
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...
Thanks for your reply. This is all very helpful, my poor GP seems to have been left as a mediator in the ongoing discussions about tamoxifen with me, I think I need some clarity from oncologist. Makes sense that it starts after radiotherapy.
Just to throw something else into the mix. My BCN told me if I have any issues with hormone tablets ( decided and prescribed my oncologist) I am to speak to her not my GP and the hospital men's team look at changing them. I only go to my GP for repeat prescriptions and anything I may need for side effects. I'm on Letrozole as I had early menopause due to hysterectomy at 41.
Gosh, the opinions of oncologists vary don't they on when to start......mine has sent a letter to my GP to sort it out and manage it.....so I'll see what she says the letter said ?!
My oncologist surgeon suggested I start Tamoxifen ASAP after I got the results 2 weeks after my op (ie re margins and lymph nodes). I was slightly apprehensive about Tamoxifen at the time so spoke to my other oncologist (for chemo/rads) who said that starting Tamoxifen after rads would mean that should there be any side affects of rad's it would be easier to know what was causing this. Hence pro's and con's of starting at either time, so personal choice being guided by your oncologist.
Jobey, when did you start your tamoxifen ?.....I just want to get on with it sharpish......but it seems that we have to wait weeks between things. X weeks before surgery, X weeks before rads, X weeks before whatever is next treatment. Do you reckon starting before or during rads is allowed / disallowed. I just feel it's so painful for us all to be waiting and feeling like we want to act quickly to deal with things.
ok, I wrote a long letter to the GP and dropped it in today. Said the consultant would be sending her a letter but wanted to give her the 'heads up' about the hormone options I wished to discuss with her. Hopefully that will get her checking and reading up on things a bit, if she currently has little knowledge.
The other thing that occurred to me was.....right, and this is more of an 'interest thing'....they take away your lymph nodes to biopsy them... but then this leaves you vulnerable for any future recurrence surely ? I meant to ask my onc. this the other day. Not that they can of course rinse out my nodes and plonk them back in, lol, but just wondering really what happens when they take those nodes away does the lymph just get to the end of the lymphy tubes bit and stop as it can't pass through as it used to. I don't understand it really, anatomically speaking. Anyone else understand ?
She is apparently writing to GP to start all of that right from the start. Hence the issue ......lol
Thanks, yeah, and you were 46 weren't you ?
ive got this next hormone thing to decide now. Flipping eck. I am veering towards tamoxifen rather than the 'bring on the menopause' thing. Oh I don't know.....lol I need to be well informed as my GP will be managing that, and she is......well.....I don't have the words....but ditsy covers it politely.
Thanks Jobey. Were you offered the option of Zoladex and then letrozole? The Zoladex injections to induce the menopause? I don't have an issue with any extra rads....saying that I've not had one yet and I sound quite blasé lol I just wasn't sure if the booster was a localised site or not, and you've confirmed that. Thanks for your reply xxx
Hi Charys, a lot of ladies are given booster rads and they are just the same as normal ones I believe but aimed only at the tumour area rather than the whole breast like the others do, I didn't have any boosters so it's not always the case after a lumpectomy, it will depend on size and grade of your tumour and is just an extra precaution and I would have gladly had them if I needed too! I take Tamoxifen as I'm pre menopause and although they have messed with my cycle I'm still having periods though not as frequent now which is a good thing, I don't have any real problems with them other than the normal odd flush and bit of light headedness now and then, I've been taken them over a year now so ticking down to my five year goal! I've only just read that you won't be having chemo now so hopefully you will sail through rads like I did and be able to carry on with your normal life and start to,put this behind you! Xx Jo
thanks Seabreeze, so 'focused' area , okey dokey, thanks. Cool ( or rather probably rather hot actually) 😳
Hazel, feel free to chat away on my started thread as much as you like, it's no problem. I find it interesting actually that this seems to be the case on this particular forum, people divert off the original thread most of the time. I think that's great. Isn't it interesting also that there is so little moderation compared to any other forum you ve ever visited........it's not generally needed is it as everybody gets along so darn well.
As as you can see, due to it being silly o clock, insomnia is a big issue for me currently. It's so infuriating.....feeling totally exhausted and just getting so little sleep. I've never had this before in my life. You asked a few questions earlier on, I'll go back and look and pm you forthwith. I just wanted to say though, you need to base your decision, if you are borderline for chemo after your final biopsy results, on so many factors and be guided by information from your surgeon, BCN, leaflets, oncologist and from gathering your own evidence and mentally running through different scenarios. It was an agonising week coming to the decision to not have chemo for me, I spent so long reading, researching, asking myself questions and considering the outcomes and coming to terms with things, If you are in the borderline category, then it is perceived that it can't be sure if risk outweighs benefit, so it becomes a psychological choice where you need to think about what is the right thing for you now mentally and physically. Everyone makes a personal decision, some want the chemo for peace of mind, some don't. I won't go into my personal decision details here, but I am happy with it, and my oncologist is too. I was fortunate to have clear margins and no node involvement as well which made a difference, however it would have made a difference to my decision if some factors had been different at post surgery biopsy.
Thinking of you tomorrow, This is the big step to the cancer being removed now 😄
Thanks Seabreeze. I fully intend to do all my post op exercises, I'll be eager to drive and get out an about as soon as. Thanks also for explaining about the tablets and the booster rads as I've been told I'll probably need Rads and as I'm the same age as Charys booster rads will probably be recommended.
Charys, I'm so sorry! I've completely taken over your thread!! Maybe repost?
I hope your op goes as well as it possibly can. Natural to feel a bit like you are spinning at such a time.
Regarding your query about Tamoxifen, usually it is offered to women who have an oestrogen positive cancer, and who haven't gone through the menopause. There are a range of hormone therapy med's which can be prescribed for women who are post menopausal, Tamoxifen being just one.
Thoughts with you during your recovery from the op. And just try your best with the post op exercises...but do them regularly and you'll gradually loosen up.
all the best
Seabreeze (nearly 2 years post op)
Booster rads are usually offered to women who have had a lumpectomy. The main rad sessions treat the whole of the affected breast, whereas the booster focuses on zapping the area around the location where the lump was, from recollection mine was a focused zap on an area with approx 10cm diameter.
They make a template so that they can zap/target exactly the same area during each boost.
It makes sense that by having a focused zap where the cancer was helps provide more likelihood that should any c cells which may possibly have remained get destroyed.
I hope the rest of your radio goes well, if you have any skin complications ask the radio team what they can recommend.
I've pretty much already decided not to have chemo either and I've not even had my lumpectomy/SNB yet. If you were given the choice then they obviously don't think it necessary.
I won't sleep tonight and I'll be a wreck in the morning, extra diazepam will definintely be needed! I've got my Pre Op at 11.30am then appt with Breast Surgeon at 1.30pm. I'm gonna ask about counselling cos I'm really not coping too well at the moment.
I'm confused about the "taking of tablets", are you hormone receptive or does everyone get offered tamoxifen or something similar depending on whether your pre/post menopausal?
When do your rads start?
Things seem to have moved quite quickly for you which is good.
hey Hazel, good to hear from you! I don't know how you remembered part of my diagnosis, you've got a good memory. Yes, you are right, nodes clear and just rads and hormone therapy. I was borderline for chemo and after being asked to make a decision, and discussion with the oncologist I have not taken up the offer. So, rads have gone up to 20, 5 being this 'booster'. Then I have a delightful option, so many enticing choices at the moment. I am premenopausal.....so either tamoxifen......OR have ovary suppression medication to make me menopausal and then Letrozole.
ok, let's talk about your pre-op. if you are just feeling 'nervous' you are doing really well ! Did you know how I was; flipping heck was I in a state about the surgery. Infact when the nurse took my blood pressure it was up from the usual 127 ish/ 75 to 150/85. My heart rate was at about 110/120. I kid you not!!! Looking back , how daft was that amount of anxiety. The pre op seemed to take longer than I thought, I didn't imagine so many things would be covered having never had one before. When is your actual surgery?
How are you doing? I don't know the answer to your question but wondered if your were having chemo before rads? How many Rads in total are you having? Also, I remember your lymph nodes were clear I think but are you having to take tablets like Tamoxifen?
Sorry for all the questions, Pre Op tomorrow and a bit nervous!
My oncologist has prescribed 5 Booster rads, due to my age as it has been 'statistically proven they are beneficial below 50 years old'. Just wondering here if anyone has had them, and if so if they are administered in the same way as the normal ones. Did you have extra problems from the 5 extra ones?