Sorry to be so glum but I am really low today…I don´t feel like this is living, its acting at living and its wearing me out.
You are all so kind and helpful and one member has even phoned me up. But I am not sure I belong on a forum like this really as I don´t believe in the standard treatments for cancer, they cause so many other problems. If I were to have any treatments I would take the complementary route and not do chemo for sure and probably not Tamoxifen either (which they have told me I will need), as there is a natural alternative with no side effects, but it will be a battle with doctors etc etc…and probably they will wash their hands of me as non compliant and difficult. I haven´t seen anyone on this forum who has done it the alternative / complementary way.
Some of you know (and I am even bored with myself) I was told I have cancer nearly one month ago but not told what kind until a week ago. Its the lurking kind that hides and is already stage 3 grade 3 in lymph so they want to throw everything at it.
After Wednesday I shall be a lop sided thing (I mean freakish monster but I don´t want others to think I am saying that to them, its how I feel even at the thought of it). I read some of your posts and see how many of you have had so many complications and secondaries yet you keep on fighting through, you all accept all the horrible treatments and seem so positive. I don´t want to be like that, I don´t want any of this cancer stuff, or “living with cancer” as its not living, its really not. I know I sound like a spoilt brat, but I feel REALLY cheated. I am fitter than I have ever been in my life before…and now I will lose all that too.
I told my partner I will have the surgery but for anything else its better I go quickly (and most days I think of hurrying up the process if I am as revolted by myself as I anticipate I will be) so he and my (adult) child can move on with their lives faster without them being forced to adapt to this hell of uncertainty and dread forever more.
I tried anti depressants and they make me feel worse, the same inside just with less energy.
Before you make a final decision do read the story of Gloria Honeyford’s daughter Karin. I think it is called Before I Say Goodbye. GH wrote it. Like you Karin went for alternative therapy and travelled the world trying every possible option.
With grade stage 3 you have a real chance of life if you have all the treatment available.
I wish you well whatever you decide,
Valxx
Thank you Val,what is freaking me more than anything is the fact I already know it is an aggressive cancer as Ki-67 is 90% and 20% is considered high…I have discovered that I am no good at living with fear (and chemo is not a good option for me due to other health issues which would endanger my life in another way and I cannot contemplate the possibility of that fear on top of the cancer fear too…)
Agree with Val. An eye opener of a book.
Good luck whatever you decide.
Ali
I would never advice anyone how to live their life let alone how to deal with cancer.I was dx with secondary cancer from day one and no sign of a primary.All I will say is see what treatment plan they feel is right for you and then weigh up your options.Chemo is not always the only treatment,would you be able to face rads if that was an alternative.
All I can say is don’t beat yourself up,we all had some of the feelings you are having.
Good luck with whatever you decide.
L xx
Hi sascha,sorry your having such a hard time at the moment.I don’t think your Oncologist would say Chemo if they thought there would be life threatening problems with other medical conditions.I don’t think there are any natural alternatives to Chemo or Tamoxifen.There are complementary therapy’s which would help with side effects and foods which could help but these things alone are no substitute for conventional treatment but work alongside them.
Sadly it doesn’t matter how fit and healthy we are,Breast cancer doesn’t care.Of course it’s a decision only you can make.what I would say is that although you may feel rubbish for a while with chemo it doesn’t last forever and there are plenty of women who have no side effects from Tamoxifen.And the fact that you are so fit and eat healthy could benefit you through treatment.
I would be very careful when looking at an alternative route as there are soo many charlatans out there claiming allsorts, and who can be very convincing.But sadly the way they treat and the things they advise don’t work at all.
Maybe some counselling would help with the way you are feeling.
Just want to wish you all the best.Melxx
Hi Sasha,
Here’s a link on an american lady called Kris Carr crazysexylife.com/about/ please read her story it is inspirational with a nod towards the alternative also is a liver cancer survivor of an incredible 9 years, another person is Susan Weed susunweed.com/WiseWomanHerbals.htm I personally love both of the books these woman have written and rather than calling it alternative I would in my case say its been complementary because I have also done chemo/surgery/rads and am currently keeping stable on herceptin/tamoxifen combo. Just to absolutely clear I do not in anyway advise you to forgo chemo or any of the other treatments that your onc might offer you, as I have learnt so far on my own cancer journey its all such a personal decision and agree with stressy-messy cancer has no rhyme or reason, it affects the old and the young, the fit and thin and the not so fit! as my onc said “if we knew what caused cancer we would have a cure”. I do drink a pint of Green veg juice a day here’s a link to my blog site with a few recipes on it fightingthebeastwithin.blogspot.co.uk/p/juicing-and-anti-cancer-recipes.html.
Hope this helps
Sending you love and light
sarahlouise xx
Thanks for your replies
Re chemo - they were going to do it first but once informed of my other health issues agreed it was best not to. The possible after effects issues could leave me with ongoing irreversible damage that would affect my quality of life, plus my other condition is not that well known as it is quite rare so all anyone would know is that there is significant additional risk. If I KNEW there would be no damage, and no chance of permanent harm, I might feel different but that fear on top (having already been through loads of traumas as it took over a year to diagnose that condition)is just too much for me. I read that when you have invasive cancer finally diagnosed it has usually been in your system for 8 to 10 years!!
I would have radiotherapy, yes but thats not a systemic treatment is it?
Are you trying to tell me that Caron Keating really went on a wild goose chase (I thought she had conventional treatment first)? Happy to receive your comments / opinions on this, I do keep an open mind.
Thanks for warning about quack cures, I am being very careful and not gullible, only looking at things that have been properly tested - eg alkaline diet is anti-oestrogenic, Indole 3 Carbinol and Resverteral…all of which have drug companies trying to patent the active ingredients in them… etc. I can be positive as well but my energy is so low and I just dread looking one sided. I asked them to take both as for me that would be easier to deal with, I can´t bear the thought of prosthesis, and my chances of getting it in other breast are a lot higher due to current tissue changes and it being ILC.
I have had some counselling but it does not help with the physical form issues
Sascha
I understand exactly what you mean about physical form issues. I feel like a freak (you know, the Victorian circus kind - roll up, roll up see the amazing one breasted woman). Although actually nobody except my husband is allowed to see me without my prothesis (e.g. in nightwear). I hate myself every time I see myself naked. So far, I guess this is not helping you one tiny bit but I do have a positive to offer. The prothesis will make you feel normal during the day. The prothesis fitter at the hospital was absolutely determined to get me a perfect match - even though I never had that before surgery. The pocketed bras hold it in place perfectly. I have abandoned a few tops that show cleavage for the time being (maybe forever as I’m 44 now and might feel too old for low cut tops once I get my recon). I’ve been mono-boobed for 18 months now and still hate it but have learned to more-or-less forget about it once I’m dressed.
I can’t offer advice on alternative treatments as I don’t know enough. I just remember a friend with a brain tumour who spent a fortune on shark cartiledge as a supposed wonder drug that just hadn’t been licensed yet. It did nothing. She had conventional treatment too and that didn’t work either though.
Good luck with whatever you decide. It’s a stupid, shitty disease. x
Apologies sascha,I must of read your post wrong I thought you already had a treatment plan in place,didn’t realise that Oncologist advised that chemo would be to dangerous.I know in these situations that surgery and tamoxifen can benefit.Maybe give Tamoxifen a try and see how you get on with it,there are medications that can be taken to help with some side effects (if you have any that is) and also acupuncture.
from what I understand. Caron Keating found a small lump (grade 1) and had it removed she had rads but refused Tamoxifen because of it bringing on early menopause.Her cancer returned and she had a max and chemo.unfortunately it came back in the other breast and was more aggressive and it was recommended that she have another max and chemo but she refused and went to Australia looking for an alternative cure.
wishing you all the best Melxx
Hi Nottsgal - those are exactly the same words I use!! We don´t have any support services here, so there won´t be any measuring etc, just a prescription to take the chemist, and anyway I HATE the feel of silicone, always have done, that also turns my stomach. Actually it does help as you feel that way yet are managing to live with it… I don´t think I will even be able to look.
Hi Mel
Its probably me not being clear - I have MX with ANC this week, they wanted to do chemo first but it would not change outcome of the surgery, would still be as radical, so in view of all the added risks of chemo for me was decided to do surgery first.
Thanks for info re Caron K - I definitely fall into the complementary camp not the totally alternative one
hi sascha
you sound like you’re having such a sh*t time, & now you’ve got the aftereffects of anaesthetics as well as having to look after a scar you can’t bear to see
i’m glad you’re taking an informed, expert view of your holistic physical health needs & actively working with healthcare providers to make decisions about what happens to your body, but it sounds from what you say that your options are limited
i’m really sorry to hear that - even with the ridiculous maimimg effects of some of the conventional treatments, it must still be gutting not to have the option of choosing whether to accept them
what really worries me, though, is how much your changed appearance is so devastating - i’m not surprised, you’re being completely normal in abnormal circumstances but i think you need more information about psychological treatment options so you can be as expert in looking at your options as you are with the physical health ones
what’s your counsellor doing??? no ofence to her / him, but counselling absolutely does help people with the stuff about changed bodies if they know what they’re doing
before i ill-health retired from post-bc complications, i was a psychologist running a specialist team helping people with appearance concerns / visible differences / disfigurements / body changes (take your pick about which ‘label’, if any, feels right)
have a look at the changing faces website at changingfaces.org.uk/Home
the name’s misleadig - they’re not just about faces - & they’ve got a helpline - maybe think about giving them a ring?
there aren’t any magic pills that make it feel ok, but there is the option of counselling / psychology treatment with its own side effects - common ones include crying a lot, having to face challenges you set yourseelf (‘small’ / ‘manageable’ ones - it’s the therapist’s job to help you find those), having to look at other life experiences you’d rather not look at just now thank you very much, having to challenge some of your rules for living & how the world works …
please just remember for now that you’re in massive shock, & making big decisions when we’re in massive shock is best avoided if that’s at all possible - give yourself time, carry on with the counselling (or change counsellor if you need to) & wait till you can breathe a bit more easily before deciding what happens next
ok, sascha & everyone else, lecture over!
but please, please remember that we take our heads / hearts with us wherever we go & part of treatment for bc is getting the psychological support to start trying to cope with having been smashed in the chest by a very large sledge hammer
just like some of the physical treatments, it can be hard to find but it’s worth the search
sascha, pm me if you want
Hi Ali
Thank you for that link, so much love…but I would have made some different choices…
Norberte - no this is me without anaesthetic, surgery is on Weds!! I looked at a photo online to try and prepare myself and now just feel sick 100% of the time!
I have stopped the counselling as she has never been mutilated herself so cannot even get close to 10% of what I am feeling and I´m already doing the crying a lot! I also know that the breast I want has already gone as there is only cancer in its place and its not the same shape or form or anything. I had pain which is there still so I do want rid of it as it just reminds me all the time there is something wrong. So I can approach surgery with my body wanting what is there to go, its the afterwards bit that turns me over inside.
Hello Sascha
I have been in the same place as you when I was told had to have mx and was devastated. Believe it or not I am so much more upbeat now since I have accepted what I can’t change at present. Like you I could not receive Chemo due to a transplant 16 years ago (glad to say never had a days bother with) but having rads at the moment and am on Femara since February.
Still have a good old cry from time to time but just take a day at the time. Every treatment will get me closer to the finishing line and that is what I am aiming for.
This site has been part of my life since diagnosed and I do hope you will get as much strength and laughter from it as I have. Keep your chin up, we are all here for you.
Hug from Alanaa and her Fat Cat xx
no offence, alanaa, but keeping chins up is optional - letting then crash down onto the floor with a big bruise is also an option but ideally keeping some link to the idea that things might, just possibly get a little bit less bad than they feel now
sascha, don’t forget you don’t know what you’re going to look like yourself, depends on all sorts of things
i - and lots of other forum-ites - will be thinking of you on weds but maybe also continue the chat before then?
hugs, & to you too alanaa - chins up works really well for a lot of people but can make those of us whose chins just get too heavy feel like failures / really angry
Hi again, thank you - I am trying to avoid a transplant Alanaa (and you didn´t upset me at all so don´t worry) …been very close once (to the extent doctors started talking about it with us and pre-planning donor tests) and this is why I do not want to take any risks with chemo, and doctors recognise the risk too but I worry they will pressure me a lot to do it.
Norberte - I know I will be grossly lop-sided and I find that more repulsive than two breasts or no breast to be honest, somehow it is more freaky to me…not logical I know. I do feel like a failure for getting cancer, for feeling so broken about it, for not knowing I had it for so long, for all sorts. I don´t even have the energy to feel angry…I know what you mean though pretty much everyone over here has said to me positive attitude gives you better survival chances…I am not sure there is any evidence for that, but that does feel like an added pressure on me
Sascha,
Sorry to read that you are having such a dreadful time. There is a charity called CancerActive which gives information about all different types of approaches to cancer treatment. You might like to take a look. The chap behind it is a scientist by training and had a daughter in her early 20s who died of a brain tumour, but some significant while after her medics expected.
canceractive.com
You might wish to take a look.
I hope you find a way through this.
Best wishes,
Verity.
Dear Sascha
I feel I have been where you are. I can remember thinking the life I was having was not mine. I don’t think I came on this site until about 9 months after my treatment as I was way too depressed. You are doing well - be kind to yourself. Information is power.
As a stage 3B invasive lobular breast cancer lady who suffered a 4 year delay in my diagnosis because my GPs did not feel a referral was necessary and refused, I feel I have had plenty to grumble about. I did everything I felt necessary to give myself the best possible chance of getting out alive. After all, I had little faith in the medics. I did have surgery, chemo, radiotherapy, tamoxifen and now letrosole. But I also followed my own path - both ran in tandem. I still inject myself with Iscador (mistletoe) to this day. I’m not sure what has kept me cancer free but I sure know my psychological head is kept healthy by doing my own thing. Alkaline body, testing with lipus paper, diet, juicing, supplements provided by a therapist who does a hair test, yoga, meditation etc, the list is endless. Like you, it’s the large lymph node involvement that gets me down. But I’m not sure I would have rejected the main frame treatment. Incidentally, my surgeon told me it would be the surgery and the hormone treatment that I would benefit most from. Lobular BC is not always helped with chemo. Are you 100% ER+ and PR+? Have you thought about going to the Penny Brohn Centre in Bristol? Please don’t be too sore on yourself. I think you feelings are very normal at this time. Things will change and you will get stronger and wiser.
Take care and don’t think too far ahead.
Big hug.
Jeannie
Hi Verity - thank you, yes I am already in touch with Cancer Active and have ordered some things from them…
Hi Jeannie - thank you. Wow 4 years. I am Stage 3, Grade 3 but don´t know if its A or B yet. When i look back I did have some odd things around my breast, like itchy sweating after exercise but only after exercise, so I wonder now if that was a clue, as I had never exercised that much in heat before I put it down to that…
Based on biopsy I am 95% ER+++ and 90% PR ++ so I think that makes me hormone positive…I have had other issues with oestrogen dominance (severe fibroids) so kind of expected that oestrogen would be involved somewhere…
Edit - I went away and thought about your 4 years Jeannie, jeez, I hope you made an official complaint and maybe even applied for compensation, this is downright negligence.