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Sunbeam
Member
since
10-10-2018
23
Posts
8
Hugs
13-01-2020
07:32
Hi Jan, its been a long time since I spent hours on Google! I've moved forward since my diagnosis in Sept 2018. Even though it's grade 3 etc yada yada my thoughts have settled to a chilled place again. We all wake up in the morning hoping to climb back into bed at night. All anyone in the world has is the breath they've just taken. On the day I went for my herceptin there was a fatal car accident just along from the hospital. I try to remember that worry takes your today away and tomorrow doesn't give you it back. I just wondered if this was something being introduced at an earlier stage anywhere else. Thanks to you both for replying.
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12-01-2020
05:39
Yes I've left a voicemail for them. The form was the IPOS form. It makes me angry that health professionals shove these things at us with no or little explanation. It's a bit like constantly being evaluated like some robot. What you say can affect so much and can even mean a change in treatment that you would never know about. Stage 2B is early and as far as I know it's not described anywhere as incurable as doctors will never know if it can be or not.
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12-01-2020
03:38
2 Hugs
I have stage 2B, post mastectomy and lymph node clearance, chemo and radiotherapy. Herceptin and letrozole ongoing. I was prescribed Oramorph for shoulder pain both sides, didn't work. All scans and blood tests have not shown anything although obviously microscopic cells may still be present. I was asked to contact my team to discuss pain relief. During my herceptin a doctor came, gave her first name and her badge said consultant. I asked her if she was from oncology and she said no but didn't tell me where she was from. After a chat she left and I was given a questionnaire to complete. I googled both her and the form and to my surprise both are related to palliative care. It's now messed with my head. Stage 2B isn't stage 4, which is the first point I'd expect to encounter palliative care. I also know end of life care is different again. It's like saying all the treatment is only ever going to defer a recurrence. Predict site doesn't say 100% of women will die from it so why has palliative care been involved? Some sites say its for life threatening illness, which I get, but others say it's for life limiting. There's a big difference to me! Any one else had this?
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05-09-2019
04:30
It's been going on since I joined last year and I reported them at that point. I would have thought these would be obvious to moderators and site management as they must show as a regular post to be listed in first place. Someone within the web site should be taking ownership to monitor and deal with these. Who knows what virus etc some of these links may create and since some people are interested in supplements etc they may well not realise they are scam.
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04-09-2019
08:03
This is for a moderator. I've just looked at topics on chat to nurse page and at the bottom of the page were posts that appear to be scam. They have url link symbols beside them, although I didn't click into them one at least seems to be advertising supplements. I've a screen shot of them.
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10-02-2019
07:20
mine was always at the hospital, breast care nurses did it, never hurt because whole area was numb, I had my mastectomy and lymph node clearance in October and still numb! Hopefully you get some relief.
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07-02-2019
07:44
I had mine drained several times and it delayed chrome by a week. I chose to rest my arm completely for a week as I wondered if moving it so much was disrupting internal healing thereby creating pockets for fluid to gather. Next drain only 50ml, big step from usual 150 to 300 so chemo began and no drain since. I can't advise you on stopping exercises though as my decision may not be appropriate for you. Good luck regardless.
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07-02-2019
07:30
2 Hugs
I've just had cycle 4, now on tax and part. I get tiny dots of stubble come back but within 3 week cycles they disappear. I've got a really dark circle of stubble on one area which stands out like a bruise lol. No idea why! I've lost half my eyebrows and my lashes are tiny. Not worth trying to use mascara. I had the nice bonus of losing top lip hair and couple annoying hairs on chin 😉 . Leg hair feels like a days growth. Under arms smooth. Have almost a Hollywood "elsewhere " 😂 . I've read taxanes hair loss can be long term but I chose not to wear anything on my head so adjusted to that but it's personal to everyone. The looks can be annoying but not my issue. I have a few funny t shirts I wear to give people a laugh. One says cancer not cooties (cooties in Scotland is head lice). Hope this helps, being bald was always in the mix as was being flat one side. Neither bother me, I'm alive today and that's enough.
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07-02-2019
06:47
Having seen this given out at my hospital I looked on line for it. I'm concerned at the parabens it contains. Parabens seem linked to potential to mimic oestrogen. This in my mind raises alarm bells for me. Am I missing something that would explain this contradiction? I have oestrogen and Her positive receptors so keen to avoid anything that suggests it could have potential to be detrimental.
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17-11-2018
04:18
I'll have a look at sites recommended. Big concern would be treatment being delayed due to bloods not being at high enough level. Glad it works well for you.
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17-11-2018
01:49
I'm starting chemo on 28th. I've read various pieces of research for and against fasting. Did you find that your white cells, platelets etc were slower to rise having fasted? Also did bloods show any effect from liver drug metabolism as vitamin stores may be a lot lower? I know ketotic cells pathways to utilise nutrients can affect cell renewal so get why it could help chemo potentially work. There's yet another research but results not available yet. It's a minefield!
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14-11-2018
06:04
Hi So my cancer is grade 3, Her2 and oestrogen positive, 3 lymph nodes had it too, opted for mastectomy. Now awaiting chemo etc. The way I look at it is we all wake up in the morning and we all hope to climb into bed at night. I could just as easily get hit by a bus while reading the leaflet on chemo from my latest appt. I think with cancer it does suddenly make you think of your mortality but you never knew and never will know exactly when you were going to go anyway even before you had it so really what's changed. You woke up today so today was amazing ☺ We all have black moments even if we strive to think positive. I might have a moment but just say out loud ...right f### off Bob as I refuse to let it suck my day away. Bob is my BOOB without O for ONCOLOGY lol. That was name I gave my lump at the start and even though technically Bob has indeed left due to my mastectomy 😂 I still shout at him to do one.
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12-11-2018
03:09
I had my mastectomy and node clearance on 19th October and quickly got a seroma. Now been drained 5 times. Frustrating but thankfully painless to have it drained as area totally numb. Day at a time x
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11-11-2018
05:58
1 Hug
I'm in same head space a lot of the time. Think the endless waiting times don't help either. It's hard to adapt to this "new normal". I believe you may also grieve in a way for your life before this. I'm getting back to going out and about because the endorphins will hopefully kick in and help. Be kind to yourself because who would feel like dancing in the street naked after a cancer diagnosis!
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11-11-2018
05:50
I know that feeling, I was tempted to draw a scary face where my boob was and try it out at Halloween 😂
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10-11-2018
08:46
1 Hug
Update, mastectomy and lymph node clearance went well, 3 weeks later still healing and seroma drained 4 times. Now got full story of it, so it's grade 3, was 23mm, stage 2, 3 lymph nodes, Her2 positive and oestrogen positive. Don't think I can think positive any more. It's feels like basically waiting for it to spread. It's been untreated by chemicals for almost 10 weeks now and it's another three at least before I may be starting. I feel my future slipping away rapidly. I examined myself religiously but only found it when I had a strange sensation reaching out when lying down. My gp only felt it when I was lying down too. It hurt so much to see my daughters in distress when we finally told them after I'd had the op. My husband is exhausted and I feel so helpless. He needs to work for another two years until our mortgage is finished but I would get more comfort with sharing time with him. I'm sorry to bring anyone down reading this. I've read about stress increasing oestregen levels, food that mimics oestrogen, food than can interfere with treatment being effective because of the similarity in chemicals to those the chemo is trying to target and the same holds for the Her2. I'm stressed and not sleeping so even more oestrogen to make the cancer cells grow. I'm overwhelmed.
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10-10-2018
09:45
Hi. I've just posted my first post too. I had pains in back, ribs and leg. Totally agree waiting is never ending. I had gp confirm lump start September and have just had bone scans etc. Convinced myself it was in my bones and chest but it wasn't. Think now it was muscle tension and stress related. Never thought I'd smile at being told they would do a mastectomy lol. Bring it on, this warrior is waiting.
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10-10-2018
09:39
Don't know how to abbreviate it all so bit long sorry. Have grade 3 currently about 25mm and also in lymph nodes but not sure how many. Got 6 out of 8 for oestrogen, I had total hysterectomy years ago with hardly any HRT. Opting for mastectomy which is on 19 October. Feel breast nurse is being cagey in telling me what happens after op. Told me they use some computer thing to help make decision. Why do I not get to be part of the multi disciplinary team meetings? Am I not part of "the team"!! Of course I looked up Dr Google and came across a calculator and itv gave a poor prognosis which has now made me feel really low. My daughter gets married on the 15th October. My husband and I have told no one but have got family together for a meal in November to tell them then. I can't get excited about wedding because cancer is just dominating our world just now. Thinking of excuses for why I'm feeling tired etc until we tell them. I'm not having a reconstruction. I feel we've told them so many fibs, with best intentions, and it's just constantly trying to be normal mum and granny when with them all. I'm just tired from it all.
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