Best friend's Cancer & my 'alternative therapies' worries

[54isanopendoor]

My dearest oldest friend, who has been my unofficial Adopted Mother for 35 years, has breast cancer. She has had surgical removal of the (small single) tumour & been offered radiotherapy: she's declined & plans on using alternative therapies to support her return to health. That is her right of course. If anyone in the world can research & use alt. th. correctly it is her (she has huge knowledge).

But, inside I'm screaming. My Partner & my Mother both died of cancer last year.
Both within weeks of Dx & both within weeks of each other. It was brutal.
This is NOT about me I know but I am so worried about her approach.

She sent me the email just yesterday. I have ordered her some flowers (she loved the ones I sent last month when she was having the operation so I'm using the same Co to send a bunch each month for the next 3 months). I was thinking of ordering the 12m subscription (i'm broke but they gave her a lot of pleasure & i'd do anything for her) but then I sat in floods in front of the order form wondering if I was 'tempting fate' & other such silly rubbish like that.

I know that my 'I'd do anything for her' includes supporting her health choices (& that's simply correct anyway, it's her life & her body after all!) but I'm worried.

She plans on using Floressence, mistletoe therapy, medicinal fungi & indole-3-carbinol. Does anyone know much about these therapies please?

I hope it's okay to ask this here & this is not triggering for anyone who reads it.

Anyone ?

You’re right to be worried. Of course it’s her body and her choice, but those “therapies” are no replacement for actual medicine that has been rigorously tested and has been shown to work.

I know someone who did the same thing - refused medicine and used homeopathy and “natural remedies” instead. Unsurprisingly she died. Maybe she would have died anyway, we’ll never know.

She should be using those as we.as the radio therapy

Clearly the alternative therapies won't actually do anything to help the cancer; the best you can hope for is that she doesn't use anything actively toxic or harmful.

But - having had breast cancer myself this year - it sounds like hers was an early stage/low grade tumour, if she has had surgery and is not being offered chemotherapy, just radiotherapy.

I think in these cases (like mine) surgery is the main thing to remove/cure the cancer, and radiotherapy (possibly plus hormone blocking medication if it is a hormone-receptive type of cancer) is a kind of just-in-case add-on to deal with any cells that may have been left and lower the chance of recurrence. I think if you look at data on recurrence and survival rates, you will find that radiotherapy only makes a few percentage points difference in most cases. So although accepting radiotherapy is the belt-and-braces approach, it may only make a marginal difference to her outcomes, and she may have taken a clear-headed view of whether she wants to deal with the treatment and side effects. It is understandable that you are worried, but it may not be as bad as you think.

OP, I would be worried too but I think you're right, it's her decision and there's nothing you can do. I just wanted to add, please don't bankrupt yourself by sending flowers every month. That's a lovely, extremely kind thing to do but only if you can easily afford it. Otherwise it's madness. I'm so sorry that your friend is so unwell

I don’t think there’s much you can do OP unfortunately other than be there for her.

My dad did this many years ago. I went to Mexico with him for a month, following the Gerson therapy. I think it hastened his decline.

@TheCurtainQueen @Maddy70 that is my worry too. thank you x
@Lottapianos thank you x

@exexpat Thank you this is very helpful x The Cancer was not in the lymph nodes, the lump (by the ribs) margins were clear & it's not hormone receptive so that's all very good news. She has been advised to take Tamoxifen & have Radiotherapy but is not willing to do either atm. She is otherwise fit & healthy (aged 75). It's her body & her choices & she will have researched thoroughly & come to a balanced decision rather than seen some facebook wonder drug advert iyswim. I respect all of that. I am just so worried about her. She has been my unofficial Adoptive Mother for 35 years now. My actual Mother & my Partner both died last year from Cancer (ovarian/lung & bladder respectively). My Mother's dx was missed & missed again so by the time it came she could only be offered palliative care. My partner had an efficient diagnosis but declined what treatment could be offered & it was a palliative situation quite quickly. They died within 8 weeks of each other. So, I'm (trying not to be) beside myself.

@FrenchandSaunders I am sorry about your Dad x

Obviously this is a very bad decision but what can you do?

She may be lucky and be one of the people whose cancer doesn't recur without radiotherapy - of course then she will say it was down to her alternative therapies.

Sadly I meet people all the time who have declined radiotherapy and/or chemotherapy having decided it was 'too toxic'. It never ends well but generally the person remains happy with the decisions they made.

I suppose I would reconcile to this thinking that even if she had tamoxifen & radiotherapy, they might not work too. I rather radiotherapy can be moderately unpleasant. At least this way she will have better quality of life in what time remains, even if that ends up being shorter than you would like.

Best x

I hope she's going back to the 'real' doctors for check ups? Hopefully if they do find a recurrence she will go for a mainstream approach. Perhaps you could encourage her to keep to follow up appointments. But she may be lucky and remain cancer free if they got all of the tumour and no spread found.

I've had bc and am on tamoxifen, the side effects can be quite nasty so can understand her not wanting to take it. Re the radiography that can also be very tiring she maybe just wants to enjoy her life without further treatment if she's feeling well in herself at the moment. I had alternative therapies alongside all the suggested medication and have chosen to stay on tamoxifen for an additional 5 years.
I'm sorry for your losses and wish all the best to your relative.

I am very sorry about your mum and partner. My own sister died of breast cancer, so when I was diagnosed after a routine mammogram I was obviously very worried, but when you look at the stats, survival rates for tumours like mine (very like your friend's - small, no lymph node involvement, margins clear after surgery etc) are very good these days - close to 100% five year survival rate for my stage and type of cancer, and even for more advanced types of breast cancer the vast majority of women are still alive five or ten years later.

Probably your recent family experience makes you immediately see a cancer diagnosis as an imminent death sentence, but for most of us it isn't. The chances are that your friend will live many more years, with or without radiotherapy.

@AnnaMagnani thank you x
@lljkk Yes, that is her thinking x
@plumtreebroke she has been offered an annual screening which she will do x
@ranoutofquinoaandprosecco thank you for telling me that. I would prefer that she took the western medicine & the 'complimentary therapies' alongside to reduce the exhaustion of the western medicine rather than take an 'alternative' therapy approach (sorry I hope I've worded this correctly) but I simply have to respect her decision. She's an amazing person & still only 75 so I hope she has many years ahead of her. I hope you do too x

I think in these cases (like mine) surgery is the main thing to remove/cure the cancer, and radiotherapy (possibly plus hormone blocking medication if it is a hormone-receptive type of cancer) is a kind of just-in-case add-on to deal with any cells that may have been left and lower the chance of recurrence.

This was what my mum has been told. She had a mammoplasty this year and then a course of radiotherapy. She was told that they had got rid of all the cancer with the surgery and the radiotherapy was a just in case they hadn't, but they know they did.

She has stopped the pills, as they were not agreeing with her and the oncologist didn't have an issue with this, in fact wrote he thought it was a sensible decision.

I still look back at how frightening it was, when she told us what was wrong in February of this year and she's now been given the all clear and she sees the oncologist again next year. She's been very lucky and I can be very critical of the NHS, but in this instance, they have been brilliant.

@exexpat Thank you for that information it's very reassuring. Yes you are right I think I do now see any cancer dx as an imminent death sentence due to what happened last year. (I'm still in shock I think) I will try to arrange some sort of counselling for me so that I can be a better support for my 'adoptive mother' x

@HelpMeGetThrough Thank you for telling me that. It's great to hear such a positive story & you must be so relieved & happy for your Mum! x

I need to be mindful I don't 'over-react' (& it's not about me after all!)
I just got her text when I was in the middle of a different challenging situation yesterday (re ASD Ds) so I panicked a bit at her stance.

The (variety of) replies on here have really helped - thank you all so much x

So sorry to read that so many of those close to you have had this diagnosis.

The https://pennybrohn.org.uk centre might have some ideas for positive steps for you and your friend, around lifestyle choices. I did one of their cookery courses with a friend shortly after her surgery. We both found it immensely uplifting and comforting.

I had breast cancer at 48 with chemo, radio, surgeries, Tamoxifen. Alternative therapies are generally a waste of time but I would respect her choices and may help psychologically. The data they use for outcomes is on Predict Breast 10 year figures. The fact they aren't offering chemo is good.

Radio and Tamoxifen both have side effects and the impact on outcomes can be minimal esp if its the left breast for radio. If she is into natural remedies then moderate exercise for 3 to 5 hours per week cuts reoccurrence risk by 50%. I don't know how practical that would be for her but any exercise is better than none - I do swimming. I think one lot of flowers is plenty, some people with cancer find flowers difficult, due to the death link, others love them. If you have chance to join her swimming or walks and you think she might like that and be able to do that maybe could suggest that. Though do it in a way where she can say no if she prefers not. My chemo only changed outcomes by 6% so 94% of the time it makes no difference and it left me with lots of side effects. There is a balance with quality and quantity of life.

With Tamoxifen one thing she could do is try it for a couple of weeks then stop though first couple of weeks is hardest, its also worth checking the data as sometimes its very marginal like 1%.

So sorry to hear about your partner and your Mum. I hope you are getting support with that. I have seen lots of cases were people do every treatment going and get it back plus the side effects, sometimes its just down to luck. Surgery had a huge impact on results for me.

I also have a selective mute 16 year old asd child so can relate to that. Its very important to look after you too. The Goose and Carrot threads on SN chat are good for asd children, a few of us have selective mute on there. I did the Predict Breast thing though obviously don't have all the data and you would need to ask consultant but model is available online and its came out as 2% better survival chance over 10 years with Tamoxifen so its pretty marginal and it also increases risk of blood clots. Exact percentage will depend on all her data but gives a rough idea. She will be no for DCIS only, age 75, hormone positive if offered Tamoxifen, 0 for nodes spread to. Feel free to PM me if it would help. Its a bit hectic here at the moment with just back from holiday, new kitchen being fitted, and new school supposed to start on Tuesday but no details yet but should calm down soon.

@FinallyHere thank you x

@Silkiebunny oh, THANK YOU THANK YOU THANK YOU for both your posts.
Much pertinent information & so kindly offered. I will take time to absorb it. x

Thank you for the offer of a PM too. I will do that later this week (18 y/o DS in current 'crisis' re Uni so my week is - as ever- unpredictable)

I have gained a little more info (she emailed me). Apparantly she found the Oncologist very brusque & asked for a little time to think about her options. She was minded to spend some of the 12 week period she had to take up the suggestion of Tamoxifen & Radiotherapy to decide if she felt she wanted to do this. But the oncologist said: 'well, we'll just see you back here again for more surgery at some point then won't we?' My adoptive Mum is quite a senstive person but she never exaggerates so I have no doubt that the oncologist wasn't at her best. She's now come off that 12 week list as she doesnt' want this oncologist doing the tattoos & laser work. Ironically, I'd feel happier if she had decided against the treatment rather than just that she didn't feel okay enough to proceed with this particular HCP. In light of this, I might try to talk to her about asking for someone else but really I want to tread carefully. My Partner didn't want any treatment other than palliative or any heroic measures. Whilst I found that difficult I had to respect his choices & I must respect my Mothers too.

A 75 year old with an early stage breast cancer and clear margins. In all honestly, it’s likely to be less agressive than in a younger person and her approach isn’t unreasonable. It’s a reasonable decision for her to make. An early cancer like that at her age is unlikely to be a death sentence so to be honest I wouldn’t get yourself worked up. If it was more advanced, sure, but this really isn’t necessarily a silly decision for her to make and she may feel that even though 75 isn’t old these days she doesn’t fancy taking toxic treatment for a tiny benefit

No offence op but are you completely clear what you are hearing.

you said that the cancer isn’t hormone receptive but that she had refused tamoxifen. That’s only offered in hormone receptive cancers

you also said that she didn’t want the oncologist to do the laser, presumably you mean the radiotherapy? That’s not done by the oncologist. Also rhat she didn’t want them to do tattoos (nipple tattoos?) that’s also not done by them

there are surgical oncologists who do the operations and diagnosis and the clinical oncologists who prescribe the drugs and review them. The administration of the treatments are done by nurses and radiologists

I last had breast cancer aged 69. I had a small operation (day surgery) and three weeks of radio.

the radio knocked me out, but worst was the letrezole I was given. I tried it for a couple of months and felt unable to carry on with it. I talked my symptoms through with my consultant, and she agreed that the side affects I was experiencing were just not worth the marginal extra protection it gave me.

If your friend has discussed her decision with her doctors, (and I do hope she has) then give her the support my family have me.

If she hasn't discussed it with her doctor, well, I guess it's her decision in the end, but it doesn't sound wise to me.

I also think a few things have also got garbled along the way. Like you say, tamoxifen is only for hormone receptive cancers, but even then, it is also only for pre-menopausal women, and at 75 she would be prescribed a different drug: letrozole or an equivalent, which as the last poster mentioned, can have unacceptable side-effects and again is just to reduce the risk of recurrence after surgery.

And yes, the oncologist would also not be involved in the radiotherapy - that is a specialist department, mostly staffed by very cheerful, competent, sympathetic women in my experience.

The tattoos she mentions would be the three tiny dots you get to line up the radiotherapy machine (one between the breasts, one on each side of your chest). They take about a second each to do, and would not be done by the oncologist - it will be someone in the radiology department, mine were done by a trainee who looked like he was on work experience...

When I was preparing for treatment to start, I was assigned a named breast-care nurse who I could contact whenever I wanted to discuss - any side-effects or problems, anything I was worried about and so on. Someone like that, or one of the national breast cancer charities, might be much better to talk things over with than a rather brusque oncologist. But as I and previous posters have said, deciding against radiotherapy and hormone blockers could be a perfectly rational choice in the circumstances.