Hi everyone, I too am newly diagnosed
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This discussion was created from comments split from: Confussed and scared.
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Hi everyone, I too am newly diagnosed, Breastscreen found a small lump, and I was spoken to by a surgeon, given the diagnosis and told what the treatment would be i.e. lumpectomy and main lymph removed and checked. Surgery was the next week, margins and lymph nodes clear. Now Im about to start radiotherapy and Im very nervous. First I was told it would be either radiotherapy or hormone therapy, I could choose, but how can I choose without knowing anything? I have now been told that I should have the radiotherapy and 'knock it on the head' and then take the hormone therapy tablets and if they dont agree with me, I can stop. Can I? It is all moving quickly, and I know Im lucky with my prognosis, but im still scared and finding it hard to believe. Im nervous of radiotherapy but Im being invited to have a look before I start and chat with a nurse about my concerns, so Im doing that tomorrow. Now Im talking too much...0
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Hello @Bettyboo
Welcome to the online forum, you have found a very supportive and friendly online community.
I have split this thread from where is was originally posted so our members can respond to your individual post. It can be an overwhelming time having to make decisions regarding your treatment. Be guided by your medical team, take someone with you to appointments and ask any questions that you are concerned about. Dont hesitate to call our helpline on 1800 500 258 if you would like to speak with a cancer nurse for information or support. All the best with your upcoming treatment.1 -
Well done on getting thru your surgery ..... Great news that it hadn't spread to the nodes! So technically, the radiation is a bit of a 'mop up exercise' - in case any of the cancer had already spread it's tentacles that wasn't picked up by the surgery! Like you, I had the lumpectomy for Invasive Lobular Cancer and had clear nodes, followed by radiation & am now on AIs.
Talk with your oncologist - by going onto the AIs, it further reduces the possibility of the cancer returning ..... my tablets (for 5 years at this stage) only decrease the 'likelihood of recurrence' by 1% ...... but I am sticking with it at this point in time, tho technically, I could stop taking them if I wanted to. The first Tabs I tried, Letrozole made my existing arthritis aches & pains REALLY REALLY bad ..... so I was changed over to Exemestane after 2 months & I am finding it much better for my personal situation with just my hands being affected mostly.
Be open minded & go with what your team reckons is best for your personal circumstances. To be honest, the Rads wasn't 'too bad' ..... tho I had a couple of hiccups that sent me into a spin, mentally for a while.This whole disease mucks with our brain big time ...... do what you have to do, to get through it
Take care & all the best for your meetings tomorrow.
Take a good friend with you, as back up & a spare set of ears1 -
No such thing as talking too much here @BettyBoo!
Cancer is scary no matter what size or treatment. However you'll be surprised how quickly things become routine.
It's out now, so take a deep breath and slow things down until you're clear and ready to make your decision. If you need to talk things through you can ask whatever questions you like here, have a vent or a worry, we've all been there and understand. Talking to the nurse is a good idea, and you could always call the BCNA nurses on the helpline, 1800 500 258. They're super helpful.
No one can make you do anything, but almost everyone has the treatment their doctors recommend. The pulse is the thing, so keep your eyes on the prize. And after radiotherapy you can try the hormone therapy. Not everyone has side effects; you won't know if you don't try. Big hug, K xox1 -
Welcome! The time after diagnosis is so hard - either your head is spinning or you're in a fog. How many radiation treatments do you have to have? It's not too bad although a pain to have to go every day. Some women have some problems, others don't. So go with the flow on it and talk to the nurses if you have any discomfort. There are lots of discussions on this site about radiation - if you use the search bar, you should find some really good info, or just ask.
Regarding hormone therapy, ask your onc what and why you should go on it. It's his job to give you the information about the suggested treatment. You can only make a judgement based on what you know. I've had surgery, chemo and just finished radiation - at the same time as rads, I started on Letrozole. So far, in 4 weeks, I don't think I have had any side effects that I can contribute to it. I will be on it for 5 years in the first instance, with a high probability of 7 or 10 years.
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Welcome @Bettyboo,
Everything is so scary at the start isn't it? I too had surgery, chemo and 30 rads 10 yrs hormone therapy. I had next to no problems with the radiation. My skin held up really well until the last week and even then it healed very quickly after. Get yourself some Moo Goo for the moisturiser. It works very well.
I had no fatigue and carried on life as per normal. The worst part was driving there every day.
Check with your doctor about the extra level of coverage the radiation hormone therapy will give you. They will normally put a percentage on it. For me the rads were an extra 8% and the hormone therapy was another 6%. That might help you make a choice.
Keep talking. We all know how you feel.
All the best.1 -
Thank you everyone and thank you Giovanna for splitting the thread. Ive woken up to some very supportive messages, and all the information is amazing, I appreciate it so much. It is all very scary kezmusc. Today is the day I go to the radiation centre to have a look around and if I decide to go ahead - and now I know I have to - I will be measured up, probably to start Monday. I have to have 16 sessions which I know is short compared to most. I do have access through my surgeon to breast care nurses and they have been fantastic. Arpie, I appreciate your clear explanations which help a lot, what are AI's? I do have arthritis, have had two hip replacements and a lumbar fusion - I am 67 in case I didnt mention it, I panicked a bit about that and the nurse said it was ok, they would just change me over, they are so patient. I have a tubular cancer, which appears to be a good thing as far as cancer goes and with research and trials they are finding out things all the time, so I was given a choice, but now the radiation oncologist is telling me to do both. I have not been able to contact the first oncologist, she seems to have gone to ground which is why Im exploring things myself. Mind you, she is the one I will be seeing so Im suprised she didnt return a phone call or the email, just to put my mind at ease. Am I being too harsh?
Feeling rather isolated, as Ive not long ago moved away from everything familiar, sold my house, retired and moved close to a daughter who now tells me they are moving to Queensland soon. I was just starting to make some friends when this all happened.
Thank you so much for your messages.
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@Bettyboo u r not being too harsh at all! U are in a scary and vulnerable place and we count of people like our oncologists to help us navigate all the medical options. Big hugs to u xoxoxo0
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@Bettyboo, I feel for you but have confidence in your treatment and in yourself. I was diagnosed November 2017 with very large adjoined tumours invasive ductal (not lobular) with spread to nodes, 100% oestrogen positive. I am 73. Had single mastectomy, 20 nodes removed, half affected. Then 25 lots of radiation, now on Femara ( the non-generic Letrozole) and I am doing fine. There are lots of hiccups on the way but the hardest is your own mental state. You should have lots of loving support but it sounds like you are quite isolated and feeling scare and anxious. Yes, that's what feels worst of all but after my surgery and radiation was finished I went to a wonderful counsellor. Someone on this forum will always be able to reach out to you. I think older women have somewhat different issues than younger ones. Anyway be in touch anytime or send me a personal message. Your prognosis seems very good and there's every reason to confident that your treatment will be fine.
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Good morning @Bettyboo. I hope today goes well for you. @Annski wrote beautifully and perfectly, and I would endorse her suggestion to look after your mental health. Perhaps a chat or two with a counsellor would be helpful.
AI stands for aromatase inhibitor. It's a broad term for the hormone therapy post-menopausal women are prescribed if their tumours are found to oestrogen positive. Which means their cancers feed on oestrogen to grow. An AI stops the production of oestrogen in your body. The individual ones you'll read here are Letrozole, Femara, Anastrozole, Aromasin and Exemestane. Sometimes it's just easier to type AI! If you're pre-menopausal it's more usual to take Tamoxifen. That allows your body to still produce oestrogen but blocks its uptake by your cancer.
Clear as mud?! K xox1 -
Thank you Kiwi Angel, Annski and kmakm - the information is all very useful - you are right, my mental state is not great right now, and I do feel alone, well I am alone. It could be my fault for not reaching out, and trying to manage it on my own. To be honest, I dont even know what support looks like, I think it is expected that I will just cope, and I will, I guess.
Thank you for the explanation for AI. I am definitely not pre-menopausal but Ive been told I will be on tamoxifen, I dont have a script for it as yet, so Im not sure who to ask for that, the first oncologist said I could get the script from the radiation oncologist, but none of that happened. Should i be asking about the ones you mention kmakm?
Thank you Annski for offering help via a personal message, I do appreciate it. I will take on board the counsellor part. I did find one when I moved here but the plan ran out, perhaps Ill try to find him again.
kmakm, Im finding my way around in the mud, slowly, and Im glad I had the courage to post here, you are all amazing. Thank you again and again! xxxxx0 -
Hi @Bettyboo - I am 65 and 10 years past menopause, 55 when it finally stopped! (it took 10 years to 'work thru'.)
I was originally told I'd be on Tamoxifen by my surgeon back in Jan (as it was the only one I'd really heard of at that time!) So was surprised when my first visit to the Oncologist in June & it was changed to Letrozole! But I did have worse aches & pains than I'd hoped for with the Letrozole, hence the change to Exemestane.
I only went on my tablets some weeks after finishing radiation (I was lucky & didn't have chemo.)
Where abouts are you living? Is there a major hospital/Cancer Clinic nearby? I was lucky & was able to stay at Port Macquarie hospital for my entire radiation period (4 weeks) in a wonderful 'Rotary Lodge' at VERY reasonable cost ..... hopefully you'll have access to something similar - otherwise it'll be a daily trip in & out, Mon-Fri.Shame your daughter is moving away from the area ..... hopefully, she'll be there long enough to see you thru the radiation & commencement of tablets. xx0 -
@Bettyboo I would be asking my oncologist why Tamoxifen and not an AI. And yes, the oncologist should be writing you your prescription. If you aren't happy with the care you receive from your onc, go back to your breast surgeon or GP and ask for a referral to a new one.
You don't have to be alone in this. One thing about BC is that this year it will be the most commonly diagnosed cancer in Australia. There are a LOT of services out there for us. Check out the Look Good Feel Better workshops, the Otis Foundation, the Encore programme. Contact your local Cancer Council to see what they've got available in your area.
Have you given the BCNA helpline a call? I truly think that's a good place for you to start. Hang in there, K xox1 -
Thank you Sister, arpie and kmakm for your suggestions. I have no idea why the oncologist didnt respond to me. I phoned the surgeon's breast care nurse today before I left for my radiation planning appointment and she said she was seeing her tomorrow at a meeting and would ask - the oncologist mentioned Tamoxifen, nothing else was suggested, so I was intrigued when I read the posts here about AI's - I have to write all those names down. I will call the BCNA helpline and get some advice also.
arpie Im now located in Pakenham, Victoria, in the south-east, a long way from anything familiar - I can go for radiation treatment to Berwick. I went there today and they did the planning stuff, tattoos etc, breath holding, ct scan, it all took a while but they were very good. I was shown around as well, as I was feeling claustrophobic just thinking about it. The lodge idea sounds amazing, if I didnt have my dog and cat, I would follow something up, but wouldnt know where to start. Port Macquarie would be lovely, I have been there, beautiful spot. My daughter is taken up with getting her house ready to sell, so I dont like to bother her, she has a six year old as well. I do have another daughter in Ocean Grove - thinking of moving there - she has been supportive, taking time off to come and stay with me and take me to the surgery etc.
Thank you all so much for your support and suggestions, I cant tell you how much I appreciate it. xxxx2
