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Sunbeam
Member
since
10-10-2018
27
Posts
8
Hugs
09-04-2021
09:48
I'm not fearful about recurrence or death. I believe however that 6 feet above is better than 6 feet under anyday and just keep throwing the drugs at me lol. I always think that when you're crossing the road reading your latest cancer article it's the bus that's coming that will be the death of you. Ain't no one living to be 200. However I still feel that there is a lot of emphasis in putting recurrence to a corner of our mind as treatment evolves, yet every day women are shocked by finding that they have had a recurrence even many years later. I just wonder if it's to do with an over egging of the unlikelihood of it happening rather than actually giving it to us straight. My oncologist finally told me my real likelihood of recurrence only after I had asked numerous times. I'm not stupid, I'd already known first 5 years are high risk for her2 recurrence and then it's the hormone driven thereafter. Add in grade 3 and lymph node involvement and the true picture appears. It's not a focus on negative but it is a safeguard against having a recurrence and feeling the same shock all over again. I expect to have one. I can live with that idea far easier than deluding myself I'm actually cured.
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09-04-2021
09:24
Although I've noticed facial hair a bit more since starting letrozole in 2019, I sometimes wonder if it's just because I was completely bald from chemo. Not a hair remained anywhere. Brucie bonus didn't have to shave anywhere lol. I wonder if this is just how my face would naturally be now that I'm a bit older and I'm noticing it more because the hair was totally gone for a long time. A lot of women start getting a peach fuzz and almost black bristles when they get older.
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09-04-2021
09:09
Hi Kali. I had PN after chemo and herceptin but it had completely disappeared probably June last year. I started another her2 target drug last October (neratinib) and the PN unexpectedly returned in February. I've been told that side effects can reappear randomly. Guess it's just pot luck what ones you get.
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09-04-2021
12:14
I had my diagnosis 2018. Grade 3, er and her2 positive, 23mm tumour and 3 lymph nodes with cancer, macrometastasis noted. Have had mastectomy, node clearance, chemo, herceptin, radiotherapy, currently on 6 monthly zoledronic acid, and daily letrozole and neratinib. Choose to have no reconstruction. Treated with "curative intent" but aware my risk of recurrence can never be zero due to lymph node involvement. My questions.... 1. Why bother calling it curative intent when they can't actually say you'll definitely be cured? Why mention curative at all as people latch onto that as meaning 100% curable Looking at the NHS Predict site the 15 year survival is only just over 50% for my diagnosis. Hardly curative! 2. I'm a realist. Despite having all this treatment and no cancer detected on recent scans, I don't, and won't, ever consider myself cancer free. I still say "I have cancer" rather than I had it. I've seen too many women devastated by a recurrence that they thought wouldn't, or didn't understand that it could, come back. For me every clear scan for me isnt a sign that I've no cancer, just that the minute cells just haven't clumped together enough to form a tumour that can be seen on scan. The cancer is still there just too small to see. For me all the treatment is more about deferring the recurrence but the doctors just don't want to tell it like it is. Is this really the case? If it's went to lymph nodes then realistically it's just a case of at some point, but no one knows when, it is going to return? 3. My understanding is that the cancer in the lymph nodes in the axilla is technically metastatic spread, why then is metastatic spread only really talked of as distant spread to other areas? Sorry bit of a long ramble but BCNs aren't always willing to answer these kind of questions. Can't be doing with the keep positive frame of mind. Doesn't change a thing and reality for me is the better option rather than false hope.
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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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