Advice and experience of treatment options

Hi SMP , sorry you have this very understandable dilemma. I can’t say what I’d decide if I was in your position as I didn’t have quite the same diagnosis or treatment. But I do remember reading somewhere that the most successful single treatment for my particular condition (invasive ductal carcinoma, strongly oestrogen receptive, no nodes involved) was the surgery. So I had lumpectomy/ wide local excision plus sentinel node sampling. Then adjuvant hormone treatment (Anastrozole) and 3 weeks radiotherapy. This was 5 years ago. I did have significant restricted arm movement for a good while (couldn’t undo my bra at the back, had to put the treated side’s arm into coats first which felt very awkward), but with exercise and time it’s all back to pretty much normal. I developed mild lympheodema in my treated breast, which is a less well known side effect of breast radiotherapy. My arm is fine. I manage the breast lympheodema with supportive bras and Nordic walking (really!). It’s lifelong but stable and really doesn’t cause me any issues now. I’m just aware of it and make sure I look after the skin as it’s more vulnerable to possible infection. 
The fact that they’re not recommending chemo would make me wonder if they consider that the risks outweigh the benefits? I think I’d want to discuss that and also to ask, what are the risks of not having surgery? It’s really difficult and I feel for you. I take your point about quality of life - can you ask the medics what are the possible implications for your quality of life if you don’t have the surgery, and if you do have chemo (if they’ll offer it). 
Good luck with it all, it sounds like you’re doing very thorough research in preparation for your next review. Love and hugs, HFxx

Thank you so much! It is my age that makes me want to preserve all the fab things I have now as it’s my only reality. I can’t think about tomorrow really. I’ve read lots of research and many people my age with cancer die within 5 years of an unrelated condition: TIA , etc 

I shall ask all the questions and look at all the options but if I’m honest I know my answer already. Endocrine ie Letrozole and meditation and healthy living. Family support this too. 

Hi SMP 

Something else to ask, if you haven't already thought of it, is how many of the 5 years that you're expecting to live if you don't have treatment will you be able to continue doing what you do now for, eg if the breast cancer continues to grow would that stop you doing the things you enjoy in say 2, 3 or 4 years time. 

Thanks but yes it’s on the list of questions! It’s very important as you point out. 

By the way, I’m happy with whatever I get in terms of time. But  have two amazing grand daughters and they are my only driver:  one would love me to be around for her Doctorate as a Clinical Psychologist and maybe Baby and the other soo clever wants to see me at her graduation. I have told them/ no pressure! If I’m there I shall wear purple! 

Exactly so yeah! 

If the cancer in your nodes is grade 3, it could spread in a matter of months if left untreated.  I know what treatment for stage 4 is as my aunt had it after it went to her lungs, and my sister had it and refused treatment so died the following year in a hospice.  Surgery will certainly give you a better quality of life and prognosis in the next 5 years.  Stage 4 treatment usually includes various drug treatments and no surgery. 

I had chemotherapy after an inner struggle  despite a then 4% gain at 10 years and have struggled with letrozole for 4 years too. Combined they give me 8% gain.  It's great that you are coping with letrozole,  but if it isn't fully working what would you do? I can understand the concern about surgery,  but breast cancer is sneaky, and surgery would greatly increase your chance of being in good health in 2, 3, 5...15. years.  I had almost normal movement after a mastectomy and level 3 clearance until I tore my shoulder muscle moving furniture and that triggered mild lymphodema. Lymphodema hasn't been the issue - the tear which anyone could have had is what limited my movement. 

I guess what I'm saying is that with treatment you could have many years in decent health,  and without treatment you might be stage 4 and spend several of the next 5 years in poor health! No one can say for sure!

I think exactly you nailed it! That is the risk. Feeling fine now but what about later….. will discuss with surgeon but not sure anyone has the answer thank you 

Hello SMP 

I am just throwing another form of treatment to you.  (BC was on left side and I am left handed).

I had a 'combined' treatment called TARGIT IORT ..... once operation complete 'thats it all done' other than taking Letrozole

(taken from their website....)

TARGIT IORT is 'one-shot' radiation given during surgery done to remove breast cancer.

It stands for targeted intraoperative radiotherapy treatment given during lumpectomy for breast cancer using INTRABEAM.

Conceived in the UK more than 20 years ago, thoroughly tested in clinical trials, TARGIT IORT treatment is widely used to treat breast cancer patients across the world.

A few things - because radiotherapy is given at the same time as the operation - that is it - all done (so long as clear margins have been taken).

Radiotherapy given 'internally' - should radiotherapy be required again it can be given.

For various reasons I went private for my treatment.  At the time this treatment had not been given final clearance by NICE for NHS use - this has since changed and is given partial approval - various conditions, like only 'one area/lump'.

All Doctors should tell patients about this treatment, but sadly most don't even mention it - there is a lot of red tape behind the scenes with regards to the Radiologist says it could cost jobs with cutting down radiotherapy treatment from 20-26 separate treatments to given during operation in 'one' go.  The are a limited number of NHS hospital that have these machines and can offer this treatment (most are London area based).

It might be worthing looking into this treatment and if you are suitable it might be a better option.
Ask your consultant about it and if you can be referring,

More than happy to answer any questions.

Below is a link to the website where you can read up a little more on it (also if you look on my profile I have detailed some of my journey).

Link to Targit Iort website....

https://www.targit.org.uk

Lumpectomy & Radiotherapy 'one' day combined operation : TARGIT IORT (Intraoperative Radiotherapy Treatment)....

https://community.macmillan.org.uk/cancer_types/breast-cancer-forum/f/general/143626/lumpectomy-radiotherapy-one-day-combined-operation-targit-iort-intraoperative-radiotherapy-treatment?pifragment-13906=2#pifragment-13906=1

I hope this helps add to your decision making xxx

Interesting thank you. But as if I agree to surgery all lymph nodes will be removed so the treatment is unlikely to be suitable for me, if I agree to Surgery that is and due to my age there is a question about radiotherapy anyway. I live in Scotland so not sure it’s available here anyway and not in Dumfries and Galloway. But thank you! Ps I read your history  … wow!