Grade 1 breast cancer

[ohdoriswheresthesalad]

I have been diagnosed with grade 1 Non specific type breast cancer today with dcis in situ. Lymph nodes clear from ultrasound.

I am massively worried. has anyone had any experience of this?

• [Title and first post edited at OP's request - originally titled Stage 1 breast cancer]

@LoudSnoringDogim dreading it too! Glad you are getting on ok

Hi, just found this thread. Too scared to look at the cancer section last year. Finding the Breast Cancer Now site too difficult to navigate and in looking for reassurance, I’m finding more things to worry about.

November and December last year are a bit of a blur now. Came off my HRT in November and I had my op on 17th December.

Invasive ductal carcinoma, 21mm, clear margins, node -ve, Oncotype score 16, stage 2, T2, grade 2.

I have 5 radiotherapy sessions starting on Monday and will be given a month’s supply of Letrozole to start on the last day for 5 years. I’m post menopausal and turned 58 last month.

Everything’s been ok so far. I went back to work and I’m back in the gym and running to manage the menopausal symptoms and to get strong for the radiotherapy.

I think 5 years of Letrozole is the thing that’s worrying me most, especially after reading all the accounts on Breast Cancer Now.

@Dancethroughtherain
hello, sorry you’re going through this too.
how are you feeling? What’s worrying you about the letrozole?

Hi, I was a big advocate for HRT after starting it in 2020 after all the Louise Newson and Davina stuff.

Now that I’m off HRT, surprisingly, I feel ok. Maybe that’s because it’s only been 3 months and I’m less focused on the occasional hot flushes because of recent events. I’m also exercising, eating well, watching my weight.

Letrozole looks as though it will do everything that I’ve been trying to avoid and more. Bone thinning, raise cardiovascular risks, weight gain etc…

I will have a read of the thread on healing and the podcast that @Ikeameatballlunch (I think) posted on page 17 of your thread.

I really hope there are some inspiring stories of how to get through it.

Had my appointment yesterday.
I’ve been offered a trial. It’s this.
has anyone else had this?

ive still got to wait another 4-6 weeks for a CT scan and then 2-3 weeks after that for my radio to start.
its 11 weeks Monday since my surgery!

Hello, sorry I fell off the thread, so much going on.

Glad you’re through!

I had the 5 days boost as far as I know. Iirc was rolled out during the pandemic. It sounds like they’re comparing a slightly different level.

The difference from what I’ve gathered is that as I got a higher dose within one week the side effects were different. And I don’t feel they knew a lot about that at the time. For me I felt fine for about a week or so afterwards but it really hit me a couple of weeks after that. However everyone seems to react differently and I was also in full hrt withdrawal plus 3 months into tamoxifen.

Did they say what you’d get if you don’t do the trial?

@Ikeameatballlunchhello again!
how are you doing?
I would get the 15 days standard x

I’ve not seen any info re this trial. I completed my radiotherapy last Monday. Had 5 plus 5 boost. Boob was a bit tender and sore but all fine now. I went back to work on Wednesday
start tamoxifen on Monday

I’m doing really well at the moment, thank you. Still on tamoxifen. Had no periods for 10 months but had another thyroid wobble after my last one - it always takes a few of months to get over that when corrected. No idea if I’m in natural menopause or the tamoxifen! I also had to bump up folate and b12 a bit which has helped.

I’ve been really using breathing exercises after a couple of the menopause and cancer podcasts covered it in relation to stress / menopause symptoms. They feature an nhs gp whose side business is teaching buteyko breathing, but you can use a free app. the James Nestor book Breathe is very good too.

I feel more stable as a result of all this (who knows which bit is the most helpful!) and sleeping better. I’m actually more ‘with it’ than when on hrt weirdly. @Dancethroughtherain I hope this gives hope! (Oh and I’m really good with diet/ upf eating the kinds of foods Zoe and the drs kitchen recommend. Brewing kombucha and kefir etc. took me a long time to slowly make small changes here and there.)

Re the trial - I think it’s up to you. I had no choice but to do the newer 5 days version. It means you’re done after one week and is just as effective. But I think the side effects are delayed and may hit a bit harder of they do. The hospital seemed to indicate I might not get any. And I do think some people don’t. But two radiologists who are friends of mine I’ve spoken to said it was a higher dose so very likely why I was totally mashed for several weeks!

https://www.breastcancer.org/research-news/accelerated-rads-has-same-effect-as-traditional

Here is an article on the original Fast Forward study that I found when I was trying to fathom exactly what the difference was between the total amount of radiation received over 15 days compared with 5 days.

I’m glad I found this article because I was able to show it to a radiographer who confirmed that the 5 day amount shown in the article was what I received.

I think Fast Forward Boost sounds more up to date but I do think it’s important to have this sort of information to be able to compare the long term outcomes.

My last dose was on 27th February with Letrozole starting the next day. Not great timing as it’s affecting my sleep and I’m expecting the effects of the radiotherapy to peak in around a week.

If I hadn’t seen this article, my understanding of the 5 day dose world have been that it was a third of the 15 day dose.

@Dancethroughtheraindo you think those reoccurring rates are high?

Well, in this particular group of women, the recurrence rate for women receiving 26 Gy over 1 week looks significantly lower to me personally.

When you think that 1 in 7 women will get breast cancer in their lifetime, maybe those recurrence rates over 5 years are actually quite low?

Do you feel that the radiologist didn’t answer all of your concerns? Consent for radiology seems a bit vague compared with consent for surgery in my experience.

@Ikeameatballlunch I do understand what you mean about feeling more ‘with it’ off HRT. I felt great for a while, but a week of Letrozole and I feel like a vehicle with no suspension and I’m wide awake at night.

I’m trying to eat for low inflammation, whole foods, logging it all on my fitness pal so that I can check that I’m having enough of everything and not overeating.

I’m exercising to help with menopausal symptoms but it’s difficult to find the right balance between weights to protect bones and joints and running to sleep better and for the mental health benefits.

@Dancethroughtherainits all so confusing. I too thought you were getting a lower dose of radio until he explained but that article explains it better that ny oncologist said.

Im so concerned that by the time I get radio I’ll be 18-20 weeks post surgery!

make sure you’re eating enough protein - bones, muscles and brain need protein, especially if working out and especially if post menopause

the book moving through cancer was fantastic for me - it talks about exercise alongside all the different therapies.

I think I over did it when I was recovering from radio. Being told that I’d actually had higher doses so the side effects might be different was really helpful - just wasn’t told at the time! Others I knew had had 15 days which I also thought was more than my 5.

https://thebms.org.uk/wp-content/uploads/2025/09/03-BMS-ConsensusStatement-Management-of-symptoms-after-breast-cancer-SEPT2025-C.pdf

@Ikeameatballlunch Interesting that you’ve picked out the need to have enough protein. I’ve started to log my food on my fitness pal to track macro combinations. I’m way off having enough protein. Maybe once I find a way to get the balance right things will improve.

Once my oat milk runs out, I’m switching to 0% cows milk for my 2 coffees in the morning (which I don’t think I can give up. Might swap one for decaf but it will have to be a good one!).

I will have a look at Moving Through Cancer, thanks. I realise movement is key to keeping joints healthy and according to my tracker I’m not doing enough. At least there’s room for improvement which is hopeful.

@ohdoriswheresthesalad I did have to write a list of specific questions to ask before my radiotherapy which led to the radiotherapist giving me the above article. I wonder if BMS have a document on Fast Forward Boost?

@ohdoriswheresthesalad I see that you were originally told to expect radiotherapy 6 to 8 weeks post op which is what I was also told. I think the Oncotype process lead to a delay and so mine was actually 11 weeks post op.

It’s very difficult and unsettling when the information from the breast clinic turns out to be different from what actually happens, especially when you’re so reliant on the information to understand and navigate your immediate and long term future.

Maybe ask to speak to your contact in the oncology team. Hopefully they can reassure you that the delay is safe.

@Dancethroughtherainyeah I was. So I was told Thursday the BCN should have put oncology referral in on 15th Jan, before oncotype was decided cos either way I’d have needed the oncology appointment, I had onco type results 28th Jan . But it wasn’t put in for referral until the 2nd Feb and I didn’t have th appointment until Thursday just gone. Then another 5-6 week for scan and 2-3 weeks after that for the actual treatment.

@ohdoriswheresthesalad Since there’s been a change to the original plan, (it does seem very different to what you were expecting!) maybe you should talk through your concerns with a nurse. Someone from Breast Cancer Now maybe? Hopefully she will be able to send you links to research to show that there are no extra risks for your waiting time and suggest questions for your oncologist. I’d then ask to speak to the oncologist about your concerns.

Have you started hormone therapy yet? If not, maybe you could ask if that would be an option for you while you’re waiting for your radiotherapy?

I was told by my breast surgeon that the oncology team were aware of me and that I would have an appointment as soon as Oncotype results were back, which was reassuring at the time. That clearly wasn’t the case for you.

I don’t know why your BCN is being blamed though. I think it is the responsibility of one medical team to hand over to another.

I did check to see who’s responsible for booking my Dexa scan, and that has been done by my oncologist. Nothing I can do about the 6 month or so wait to have it done though.

No one is responsible for booking baseline bloods before starting hormone therapy, so I have booked that myself with the GP and will continue to ensure that my bloods are monitored over the next 5 years.

I’m going to call up tomorrow for sure. No it’s not the BCN fault, the consultant does referrals surely? I just have this irrational fear of it coming back between surgery and radio! @Dancethroughtherain

@Dancethroughtherainyeah I’ve started tamoxifen Thursday after my appointment x

I should be firm about wanting to speak to your oncologist about the plan for you first hand.

How have you found the tamoxifen so far @ohdoriswheresthesalad? I start mine today ( tonight)

@LoudSnoringDogi only started Thursday so far seems ok. I have to take calcichew tablets 2 x a day too!