Roll up, roll up and join the lacies for CANCER SUPPORT THREAD 59 - anyone with cancer is welcome (and those awaiting test results)

[WhatWouldLeslieKnopeDo]

Hello everyone,

This is the cancer support thread, which has been running for many years under different names. Most posters have breast cancer, but various other cancers are represented too! Whatever cancer you have, feel free to join us. We also welcome those who are awaiting test results to find out whether or not they have cancer. We know how difficult the waiting can be and we are happy to hold your hand. Hopefully you won't need to join us permanently

Feel free to ask any questions. There will usually be someone who knows the answer or will know where you can find it.

Whatever you do, stay away from Google!

You can post anything you like here. We don't mind swearing or complaining or angry ranting. We aren't brave or inspirational and you don't need to be either. Nobody signed up for this, but we support each other as best we can

The previous thread is here

TwitterQueen
Thank you for taking the time to talk. I think my confidence was shattered by the behaviour of someone I thought was one of my closest friends. As you say intrusive ghoulish unsupportive behaviour isn't the behaviour of a true friend. On the plus side I've told a handful of other people and they have been beyond lovely - it's just a tricky time to spare the energy to reevaluate friendships.

I think I'm confused about telling wider aquaintance - I know I'm going to be flakey and unreliable for quite a while at activities I'm involved in, but I'm not close enough to the others to want to share such personal information. I also like the idea of returning without anyone knowing and treating me any differently and without me having any paranoid feelings of being scrutinised.

Sorry to be so miserable. I'm usually someone who embraces even the bad stuff with humour but my sense of humour is cowering in a corner after yesterday. Must try to coax it out again as I have a feeling I (and those around me) are going to need it!

Thanks for your advice. It makes sense on a day when I'm struggling to see the wood for the trees.

I just wanted to say thank you so much for the advice and sharing your experiences, I haven't posted here before and this has been helpful more than I can put into words.

Also just wanted to say hi to TonySopranosVest and to LostMyLunchMoney, I can't work out how to do the flowers and gin pictures but I would like to give you flowers and gin, if that makes sense, and just to say if you'd like to rant or anything then I'm here.

Lost, I emailed my friends (in group emails) and said that I knew everyone was keen to help (or would want to help upon hearing the news) and that I was really appreciative. I said I had thought long and hard about what I'd find helpful and then listed these things. It included asking people to see me/greet me as usual (avoid head tilting and welling eyes if possible), wait for my lead to talk about the cancer, tell me about their joys and woes etc without feeling they needed to tread on egg shells. I explained that upon meeting at a social gathering, club or when unexpectedly bumping in to them there would be every chance that I would not be thinking about cancer and if this was the case it would be nice not to be reminded at that point in time. I also explained that I could also be feeling wobbly and might not want to have to deal with having to try and compose myself in a public space.
My friends were surprised, but pleasantly so, by my message. They were pleased to be told by me what would help.
Letting your friends know that you want time to digest and process all that is happening before sharing info with others might help both you and your friends navigate this tricky time?

Hi all :-)
Just wanted to say I have been sent a letter by my consultant to say biopsies and CT showed nothing untoward .
So I will sign of from this group .
@Leslie thank so much for all the help and support you offered me.
Send you all love xx

Phew! That's fantastic news VLCos I'm so pleased for you

Waving to everyone else

@WhatWouldLeslieKnopeDo thank you ! You kept me sane during this process thank you so much !

Hello Lost. I so understand where you are coming from. Yesterday felt pretty relentless as I explained over and over that I don't know what the prognosis is (are they asking me if I'm going to die soon? I mean, WTF?), what grade and stage the cancer is at, when the operation is booked for, can I meet up with them soon, I should give up dairy (!) as disease can't grow in an alkaline body (!!!) etc, etc.

It's exhausting already. I think people are just worried/don't know what to say/outside their comfort zone but I did have one friend ask me when I said I was having a mastectomy if it was a double (!!!!!) I mean, what?! No, it's just the one at the moment, I'll let you know if my trouble doubles!

MrsRhod - thank you, you're right that this is my experience, I'm just a bit of a people pleaser/worrier so I putting my needs first is quite alien in that regard. I'm working on it.

overegged My consultant told me that during trials they have discovered that the time from discovery to treatment can be 12 weeks before any further "damage" is done by the cancer (if you had it). Not sure if this helps you at all with the holiday, it is definitely worth waiting until you get your results before making any decision though. for you.

Brilliant news from VLCos! Hope everyone is doing alright this evening.

Lost - we are in similar boats. I too was in and still am in an anxiety whirl. So diagnosed with stage 2 bc in early April. Had lumpectomy and lymphnode biopsies in May. All seemed fine after that. Went on holiday at May half term, came back to a letter.. 1 margin not clear. Had margin reexcised in June. Another letter, still not clear. Had margin reexcision two weeks ago. She took out loads! Decided in my head that if this wasn't clear then I'd go for mastectomy because mental health is deffo more doom and gloomy than before. Yesterday got the results. Margins she took ate clear BUT while in there there was some fibrosis in the cavity which came away. She took it all out and sent it off even though she didn't need to. Thats come back with a variety of cancer cells in it and the margin is only 0.3mm.

This has thrown me completely. If she hadn't found it then likely the radiotherapy would have zapped it but they need to reoperate. She wants to do another margin and sort of ice cream scoop the whole area taking away loads. Booked in for Thursday.

Brain is now screaming 'what if you are riddled with it?', is it worth doing, etc, etc but again totally get the point that for the sake of three weeks (week up till Thursday then two weeks till results) I may save my nork - as she said - it's such a tiny tiny amount.

Anxiety was high and am now feeling very twitchy and back to where I was when first diagnosed - actually worse because then they were saying it's a simple cancer and all easy. Now it just won't let go.

Additionally, I've got a peculiar feeling in my ribs under left (non cancer) nork. I only feel it if I am lying flat. Ribs feel tender if I poke them. I'm fairly sure it's just a muscle strain or something that's happened during theatre (lugging me onto the table?) or me doing too much but brain in overdrive. Had the bone density scan yesterday and keep thinking 'can he see something. Is there going to be another thing? Have I got bone cancer now?' Not sure what to do really. Am now on Letrazole and wonder if anyone has experienced low mood with this. Anxiety is pretty much heightened so don't know if it is worth contacting gp to see if there are any suitable meds. Or just get a grip and ride it out.

Sorry this is so long.

Sorry Lost - I mean in terms of your brick wall analogy. Just seems like there is never any good news and it is just relentless. In terms of friends, they have mostly been pretty good. One person who I thought would be supportive (makes quite a show at work of being supportive to people) is but I think has distanced herself. Others, whom I know less well have been ace. I'm still thinking I might land up having a mx and have contemplated and looked into all the recon choices. If I just had a mx with delayed recon (have decided I will go for the DIEP), then I might not shout about that as I don't want work staring at my chest. If I go for immediate recon then people will know because it is such a massive op with four months recovery. Am trying not to think along these lines at the mo as got to start feeling positive that she will get everything out this time round.

I haven't let the world know quite so much as time has gone on because I feel that it gets boring for people. Fortunately, I recovered from last three ops quite quickly so appear 'normal'. However, I think if you need practical support then you need to specifically ask people and give them jobs. So one friend might be able to batch cook stuff, another to be a distraction, another for lifts. This plays to people's strenghts and also people do want to help but don't know how and don't want to intrude.

Feel free to pm me if you want to wibble jointly in a corner with someone. It's not the operations I find hard, it's the sodding results appointments.

for all those having a rough time. I hope you manage to have a reasonable weekend.

I'm off camping with Shine so see you there any lacies who are going

to everyone
Sorry to be so long coming back to everyone who took time to answer me - it's the school holidays and DH was back at work today so I had children enjoying their freedom...

Leslie fingers crossed for good weather for you this weekend

watercannot you've given me loads to think about - my usual way of coping is to try to pretend it's business as usual and not have any fuss made but it's finally penetrating my thick skull that this is something that doesn't lend itself to glossing over. I like the idea of being upfront about when and how I want to talk about this and can see your advice helping both me and my friends, Thank you

Tony Holy cow - those were some humdingers of responses you got. My best was someone who repeatedly called me a "Lucky Bitch" as my BC was found by chance. Not feeling the luck yet but at least saying that crap may have made her feel better

Flyingpretty Sorry you're having such a bad run. I really hope your surgeon gets clear margins this time. I've found it much harder to cope with the pain and itch of recovery from my operation since I found out it had all been for nothing. I almost wish the path report hadn't come so quickly so I could have got through this discomfort whilst still hoping it was worth it. I think you nailed it when you said you didn't want people staring at your chest. I think that's probably what's holding me back from telling people as I'll start to feel that every glance is someone sneakily trying to guess which one was "done" . I'm hoping for DIEP so I realise that hiding the recovery will pretty much be impossible. On the bright side it's good to know that the stubborn pad of belly fat I've been nurturing since I had the DC is now going to be handy to have.

Wibbling in the corner here sounds good. My biggest stress now is trying to scare up child care at very short notice during the school holidays as I've now been referred to another hospital and my BCN says there's a new wave of short notice appointments coming my way.

Sorry to go on so long.
to everyone and hope you have as good a weekend as is possible.

Just popping in from lurkerland to say hope the lovely Lacies have had good weekends? How was camping Leslie? The great outdoors is so good for the soul.

Also, for anyone suffering with anxiety or just old fashioned tiredness, do make relaxation, mindfulness, warms baths etc a priority. Make yourself the priority!

Love to all affected by this seriously crappy disease.

Hi - I'm new to this thread. I'm just posting quickly from hospital. Found lump 2 weeks ago, appt today and they seem sure it's cancer. Biopsy done and seeing surgeon shortly and nurse too.

Everything is spinning. I'm 45 and DC are v small (1 and 4). DD1 is recovering from a life threatening illness and we've all neglected our health this year as she was in hospital for ages. I just feel so broken. Please hold my hands

Hi again,

Hope you guys are ok and had a nice weekend.

I'm one week on from a core biopsy, and whereas before this lump in my right breast didn't hurt at all, now it hurts all around it. It kind of comes and goes, an achey feeling, but pressing it doesn't make it hurt if that makes sense. Also my armpit now feels 'tight', a little achey, if that makes sense? Does that sound like something to be expected after a core biopsy?

I get the results on Wednesday so kind of just wishing this week away now. In other situations I would normally educate myself as much as possible to feel in control, but I read these stats that being younger than 40 (I'm 38) gives you a worse prognosis so that made me feel bad.

When you read these 10yr survival rates, are those the same as the rates of recurrence or secondary breast cancer? I'd love to hear stories about people diagnosed with breast cancer in their thirties and living until they were 90, but I don't know anyone who's had it, such that the only people I 'know' of are famous people like Rio Ferdinand's wife, and of course that is upsetting.

I'm so tired, I normally can fall asleep at the drop of a hat but I can't sleep, and I have so much work to do!!

xx

Hi eagle...just seen your post. Have a hand...im 44 with a 7 year old and 20 year old. Have you had results?? Xxx

Hi Eagle
Another one holding your hand here, and wising you lots of luck. Keep us updated (if you want to), there are lots of people here who can help you.

Hi Eagle, hand holding here. What a nightmare of a morning you're having. I hope you've been seen by the dr now, the waiting around is hideous, we've all been there. Let us know how it goes, there'll be someone who has been through something similar.

Overegg, it's normal to have some pain and bruising after the biopsy plus I'm sure you are hyper sensitive to it at the moment. Be very wary of reading stats online, it's very likely to be outdated. Treatments are changing so rapidly and are much more tailored to the individual rather than a one treatment fits all regime. We don't have many rules here but keeping away from Google is one, it will scare you to death and drive you mad. Wait for your results then ask those questions if you need to.

In other news I'm finding anastrazole a real pain quite literally. Seem to be suffering every side effect. I've just been to see my local pharmacist to ask about different brands and she's going to see if the company who made the tamoxifen I finally settled on also make anastrazole. Chances are it's just that my body doesn't like it. The oncologist said if I have even a low level intolerance to it I could switch back to tamoxifen.

I also read last night that the recommendations to take these drugs for up to ten years might be reversed as studies are showing it doesn't offer the benefits expected. Anyone else heard that?

I'm having to attend a meeting at my local hospital next week about how women will be followed up in future. It sounds like less appts with a doctor and more reliance on mammograms, not necessarily even annually. It's being hailed as creating less anxiety by not having to visit hospital so often but I fear it's financial cuts. Has anyone else had this?

Another hand here Eagle. I don't have any children, but some of the others have very young ones too. I hope you've been given some reassurance from the surgeon/nurse

mrsrhod I hope you can find a brand that works better for you

Overeggedit definitely don't Google. Lots of it is out of date. I don't know everyone's exact ages but there have definitely been quite a few under 40s on here over the past few years

1234 camping was great thanks, despite the rain how are you? That's excellent advice!

Lost good luck with childcare hopefully people will be happy to help out

Waving to everyone

Mrs my "follow up" is using this system. I have a mammogram on my good side every year with results by post. I have no routine chat or clinical breast examination from a doctor or BCN. As I had a mastectomy I get no checks at all on my cancer side. With traditional monitoring I would have been given an examination of my scar, armpit and sub clavicular lymph nodes.

The idea is that if we have any concerns then we can call a BCN who will decide if we need to be seen in clinic. However, that does rely on the patient being vigilant for symptoms, so I can't see how that reduces anxiety. I think there is a real concern that some groups of people may not want to make a fuss and so will delay seeking help - particularly the elderly. I am also concerned that if there is a change in standard care then people being remotely monitored may miss out. However this seems to be how cancer services are going so I suspect the changes will be made anyway. It will be justified by saying that complications can occur at any time in the year and that some patients delay seeking help if they have a routine appointment booked in a few months.

Am doing ok thanks Leslie , glad you survived the rain!

Just to reiterate the not googling thing - it's linked to the statistics point, which is that statistics may apply to a population but they don't really apply to individuals in as much as individuals can be all along the bell curve, right from one end to the other. And all the bell curves online are, by definition, out of date as they don't include people living with or recovered from cancer now.

Not even oncologists have a crystal ball. Trite as it may sound, it really is best to just focus on each day as it comes as tomorrow, next week, next year are all uncertain for everyone, cancer patient or not.

Lecture over!

all round

Thanks so much everyone. And hi to Eagle, and . I will step away from Dr Google now...

Good morning ladies, I've not been a MNer for long so only just thought to look for a thread like this. Thank you OP for starting it

I'm 49 years old and live in Turkey.

I was diagnosed with DCIS & IDC in my right breast last October. Within 6 days of confirmed diagnosis I was in for a partial mastectomy and lymph node removal. Margins were clear and thankfully nothing found in 6 lymph nodes tested.

December 1st I started 4 x 3 week chemo cycles.

March 6th I started 30 rads sessions - 24 general, 6 targeted.

May 12th I started 7 years on Anastrozole.

During rads my chest, breast and underarm area were very sore but sweet almind oil and a hydracortisone cream helped a lot (when I finally asked my RO to take a look!).
My nipple was extremely sore and a LOT darker in colour to the rest of my breast. Pretty normal right? The problem was (and is) that breast is a lot bigger than the other one and the nipple tip kind of got replaced by a thick, wide, very dark crust. It was tender but I assumed it would get better along with the rest of the surrounding skin. It hasn't. Whole breast is still big and I accidently knocked the nipple tip about 6 weeks ago and part of the crust lifted up but was still attached. Now I'm a complete baby when it comes to things like that so it just made me feel sick to see it (and it bloodywell hurt!). My best solution? Stick a plaster on it and forget about it!
I finally plucked up courage to have another look yesterday as the pain had increased and the breast still hasn't reduced in size. Also sometimes there's signs of weeping on the used plaster.
So the nipple is still just a thick, dark brown almost black crust.
We made an appointment to see my MO for Thursday morning about this (and to discuss my Anastrazole SE's) but I was just wondering if anyone else had experienced this problem?
Thanks for taking the time to read this post, sorry it's a bit long-winded!

Hello. Waving to all.
Apologies for sudden appearance, bearing research, rather than doing a proper bit of support; not very often on MN at the moment.

Young age and breast cancer - the absolute latest thinking is that youngness doesn't make much difference. As long as the teams are treating it with the up to date stuff, there's excellent results. So good that (for example) in last month's study, 100% of younger women with HER2+ sort had no recurrence after three years (and counting).

So, stay firmly away from Google and its very out of date stuff.

Margins: In July, there was a new study from a Dutch research team. They looked at some 10,000 women who had some positive margins after lumpectomy. They studied survival rates for those who had re-excision, and those who didn't. As long as people had the right rads, it really seemed to make no difference at all. Both groups did very well. If there's loads of lump left, then it's right to remove it. But odd bits of it seem not to matter, once zapped with rads.

Hoping that helps a bit.
And hand holding for those waiting for results, treatment and otherwise.

Hi amber

Where can I find the Dutch study on positive margins? I'm still struggling with the prospect of mastectomy and would be very interested in reading the Dutch study. How long a time period was the follow up for?

Thank

Good evening all

Lost sorry my iPad isn't being very cooperative so I can't copy and paste the link at the mo, but if you scroll up I shared a link on 1st July. I believe that is the study amber is referring to :)

amber your sharing of research is definitely "proper" support. It is very reassuring. Thank you

Jg1 hi and welcome sorry I have no useful experience but I think you definitely need to get it checked. Sorry I don't know what the acronyms MO and RO are, but do you have a specialist nurse? I'd perhaps try and talk to someone tomorrow if there's anyone suitable, rather than waiting for Thursday morning. It sounds like it could be an infection risk if the skin is broken

Overeggedit fingers crossed for you for tomorrow I hope you manage to get some sleep tonight

Flying are you all set for Thursday?

I hope everyone is alright