Tamoxigang New Year, New Thread, *46*

[BetsyBoop]

Hands round a for everyone.

harriet - I was diagnosed end of May and started chemo in June (had 3 cycles then 8 week gap whilst I had mx then 9 weeklies of Tax) and finished at the end of November. I'm not having Rads so would have been all finished but chose to have reconstruction last week.

So elapsed time for 6 cycles of chemo plus mx was 6 months.

Lily, Betsy, Malt and I all started around the same time and LilY finished first as she had no surgery or Rads but we all completed chemo in Oct/Nov time with the others doing rads now'ish.

So despite us all having different treatment plans we've kind of ended up together - I'm sure they'll be along to confirm.

I will be 8.5 months from diagnosis to going back to work .

Do not underestimate the time you will need after the last chemo to recover - others may disagree but I'd say it takes more than 1 month (about 2 in my case) to get back to anything like 'normal'.

Hi, I'm sorry if I'm intruding here but am in need of some experienced advice. My sister had a bilateral mx last year and my dad had two primary cancers, so I've been referred for annual mammogram.

I had my first one a month and a half ago and can't get results from consultant's secretary. I mentioned this to my gp today who showed me the results. I have a 8mm soft lump with calcifications behind my left nipple and calcifications in my right breast. The consultant has sent my results to a multi disciplinary meeting for further opinions and she feels that given my family history I may need a biopsy. I was floored, even though without my family history she said there'd be no followup or concern. I just wanted the all clear and burst into tears like a moron.

On her advice I've chased secretary for results without mentioning gp has told me and am waiting for a response to my message. I've just got a bad feeling, also if they leave it I'll be so anxious for the next year.

I don't know what I want and feel terrible even coming on this thread having read some of the posts. Sorry if I'm being selfish and insensitive.

Lilredwg

Lil welcome though sorry you have such uncertainty :( hope you get some answers soon

Harriet my hospital are sloooow so I've had lots of waiting inbetween treatments so it's taken from 1st May till now for 2 ops and 18 weeks of chemo, just 3 weeks of rads left now.

Wren I hope you get your chemo sorted soon

I don't think physically I suffered as much as some of you from tax, I only had a bit of bone ache I just felt generally grotty and depressed

Really I'm glad you're feeling a bit better today

Harriet typically (although the order may vary)
surgery + 4-6 weeks to recover
Chemo 6 cycles of three weeks (although some have 8 weeks)
Rads 3-5weeks depending on what they need to do.
I was diagnosed 31/5/13, first chemo 27/6, last chemo 11/10, surgery 11/11, rads 3/1-23/1.

Sometimes there is extra surgery to get clean margins or for node clearance and of corse not everyone needs chemo (and occasionally people do it fortnight or weekly) but you get the idea!

8 weeks 8 cycles doh!

Welcome lil, the waiting is truly horrid, I hope you get some answers soon.

Betsy I can remember all of the dates too, dh was surprised I knew them all off my heart when the new onc asked last week !

They do sort of stick in you brain don't they malt. I can remember when YOU finished chemo too (but only cos it was my birthday )

I posted on here before Christmas about being diagnosed with blood cancer and needing a stem cell transplant. I'm now at the point of needing urgent chemo in order to be well enough to have the chemo needed before the transplant.

Tomorrow I am going to look at the chemo unit of our local hospital as my local consultant is trying to persuade me to have chemo locally rather at the London teaching hospital.

Wherever I go I will have to spend 3 weeks as an inpatient. I'm struggling to decide between the local hospital where I will be one of a few having in patient chemo or London where I will be one of several.

Has anyone had a similar dilemma? If so how did you decide where to go? I thought the deciding factor would be where ds (9) could visit (London say he can, local say he can't) but the local consultant has said he will ensure ds can visit. I'm worried about the local care (hence visit tomorrow) but wonder if it would be better to aim for this as it means people can visit me (not sure I want to see anyone but that's another story). I don't want to use up goodwill now when I won't have the option of having the transplant anywhere other than London (which is 2 hours away).

KitKat I haven't finished treatment - but have had to wait 3+ months on hormonal pill (Letrozole) to be followed by a CT scan (next week) before Onc decides whether or not I have rads. So I shall know when I see Onc on 7th Feb. He has said that rads were more likely than not, so am prepared for them. It will probably mean I can't get into work for a few weeks as I have a long commute to work.
My hair is now about an inch long but is rather dry and not yet long enough for a style (apart from a No. 2).
Still get very tired but definitely have more energy than during chemo. But sometimes my batteries seem to have completely run down and I haven't got the mental and physical energy to do more than blob on the sofa.

oh sorry Lily - I had thought there was a possibility that you had completely finished. What a pain for you to have all this waiting and watching.
Good news that your hair is growing though - I also think it will be a long time before mine gets to 'style' length!!

Hi Pickle - I've not had inpatient chemo but think Gigs has so she may be able to help you. From a practicality point of view I would have thought local hospital will be easier for your friends and family - do you have any concerns about the treatment at your local hospital?

Pickle, I can't help with specifics of blood cancer/ in patient chemo, but there's something to be said for going with the better hospital even if further away. You may feel more confident about your care, for example, which is reassuring. It matters that your ds can visit; it doesn't matter so much about your friends. It's a different case but I turned down all visitors (other than DH/dcs) during my recent hospital stay post surgery. Couldn't face anyone.

The only thing is whether you'd get more attention in a less busy unit?

pickecannot offer any advice but inpatient chemo sounds a bit grim. Personally if treatment was the same I would go local.

harriet I was diagnosed in August, original plan was lumpectomy and rads but MRI should larger and more than one lump. Sp started chemo in sep which I finished end of dec, surgery feb, then rads.

Hi pickle- yes I had inpatient chemo . Wren makes good points about London hospital.

Personally I would go for more experienced hospital even if further. Familiarity with your chemo means will be better placed to manage side effects etc. There is a lot to be said for knowing about something as see more patients.

Is this where you will have bone Chemo? If so all the more reason to have chemo there as will feel familiar and you will know routine/ staff.

The visitors thing is a bit of an issue. I actually found too many visitors ( though lovely) was tiring and made my side effects worse. Fewer planned visits with lots of rest time is needed . Don't forget there will be lots of hospital dr checks etc so you don't get a lot of peace if you have visitors too. ime being tired made me feel sick and worse on chemo.

Let me know if want advice on what to take in (am wondering if you are going to same London hospital. Is it related to the university?) .

Goodness doing ok on lower dose - no extra pain and sleep settling back down. Hope today went ok.

Love to everybody else and big squashy hugs to really.

Thank you Betsy - very useful links. I will print that first one off as soon as I get back in reach of a printer. I have been given a printout of exercises today but need to wait for the drain to come out.

Hi everyone - just wanted to share my feelings.

I have an appointment with Consultant on Friday regarding my results after further surgery to get a clear margin. BCN rang last week to let me know margins have been met. However I have this feeling of being in limbo as everything was full steam ahead once diagnosed early December but everything feels like it has come to a stand still. Next step will be appointment with Oncologist I guess and then Chemo - I just want to get on with it but after just having surgery less than 2 weeks ago I will have to be well healed before hand I suspect.

I also feel rather guilty that I have not been back to work since diagnosis and considering going back for a few weeks before Chemo starts. One minute I want to go back then the next I feel I can't face going back at all. Please tell me all these feelings are to be expected.

Sorry I have not been able to help anyone with any advise as still fairly new to this experience however I admire you all for your strength and determination.

Well wishes to all!

Hi
Thank you to malteserzz for directing me here. I have just finished 4 cycles of FEC (which were fun!) and due to start 12 weekly taxols on Friday.

I posted this on the life limiting bit but hoping someone here can help -
I will need a double mastectomy due to breast cancer in a few months after my chemo has finished. I've got my head around having to have this done but I'm honestly not sure if I want to have reconstruction.

Reasons are:

• The recovery time is longer (and the risk of complications greater) and I need/want to get back to 'normal' as soon as possible

• I don't like the idea of having implants ie something foreign in my body

• Apparently the implants only last about 10 years so will need more surgery in the future

BUT

I'm worried if I don't have them, I'll regret it later (I know I can have them later but then will need to get the skin from somewhere else on my body which means more complicated surgery).

I know I'm wittering, I guess what I'm asking is if anyone has been in the same situation and has any words of wisdom please.

Thank you

Hi Wine - I had a single mx at the end of August and had Tissue Expander put in. I just had the TE exchanged for an implant (plus small implant to lift the other side) on Friday and so far am happy with my decision. I recovered straight away and chose this option as I am not bothered by having an implant and didn't want any other part of my body chopped.

Betsy had BMX without reconstruction so she'll have good insight on that option for you and Wren has just had reconstruction from her tummy. (plus there are many more of us who have had various surgery)Do you have any specific questions?
BTW - I think you can have a TE inserted in the future so you don't necessarily have to move skin if you delay the reconstruction decision.

Also I had weekly Paclitaxel chemo which is less common than the 3 weekly Docetaxol regime so let me know if you have any questions about that.

and welcome .

Welcome wine :) that sounds good lol. I'm glad you've come over, this is such a good supportive thread I've found it invaluable. Ask us anything

Mummy wheel I'm glad you've got clear margins. I think work is a personal choice, some on here have worked all through, some cut their hours and some like me have not worked at all, though as a teacher I couldn't through chemo because of the germs. Your emotions are bound to be all over the place. I had about 7 weeks from my op to starting chemo but my hospital are v slow most people have found it much quicker than that

Pickle such a hard choice. My instinct would be to stay local if you are happy with the care as I don't think id like to be that far from everyone just in case I did want a visit one day.

Thank you for the support ladies. Well I was kind of hoping the Gp would just say 'It's normal breast tissue, don't be silly' But she didn't. She said with my age and my family history, she'd take any lump seriously. So I'll be off to the breast clinic in the next two weeks. Feel a bit shell shocked - for some reason I had convinced myself it was my imagination.

wine as kitkat mentioned I had a bmx and no recon in November. I'm still happy I've not gone for recon, it's the right thing for me (although not for everyone of course). I thought I might have a wobble afterwards, but I didn't - even looked at my scars the following day & it was fine. I definitely would have struggled to cope with the mono-boob look (very big droopy boobs here `- well I used to have!) I just didn't fancy any of the recon options and the extra surgery/risks that would entail.
At the moment I've just got the softees - I'm going to wait until after rads to get fitted for the silicon prostheses. TBH with a bra on you would never know the difference (apart from the fact I'm now a D cup instead of a J! - My choice they do make larger prostheses.). I've never been one for flashing the cleavage anyway ( well not since I was 20 and perky!)

The following websites helped me in the decision making process. There are some bare chest post-mx photos, so I know it's a personal thing whether you want to look, but for me it was important to know what it would/could look like. So just avoid if it's not your cuppa tea.
The aussie site is best avoided if you don't want to see how not to do it - some of those surgeons should be shot!
I've been left with a "sausage" under the arm of the cancer side (where they took lymph nodes out) which the surgeon warned me beforehand is quite common with "larger breasted ladies" as once the weight of the boob pulling forward has gone things sit in a different place. He's going to do a minor op to sort it 6 months post-rads.
Anyway I'm rambling now, hope some of this is useful!
www.breastfree.org/
www.melbournebreastcancersurgery.com.au/gallery-mastectomy.html

Wow, I'm so sad to see so many new ladies on here over the last few days. I have total chemo brain, so forgive me for not saying hi individually to you all, but I hope you find this thread as supportive as I have over the past few months.

Mummywheel - do not feel bad about not going back to work. I found a lump on 16th Sept last year, and by 19th Sept I had worried myself into a frenzy, and completely fell to pieces at work. I have not been back since, and nor could I have done, my emotions have been all over the place. Plus I couldnt bear the thought of all those sympathetic faces looking at me. Be kind to yourself and do what is best for you. Work will still be there when all your treatment is done with.

Harriet - you asked about timescales. As a contrast to most on here I've be fast-tracked through all my treatment so far. Diagnosed 25/09/13, lumpectomy and sentinel node removal on 27/09/13, node clearance on 17/10/13, chemo started 05/11/13. I am having chemo every two weeks and having seven cycles, so due to finish on 28/01/14. I then get three weeks off (yippee), then five weeks of rads starting 18/02/14. After that I'm going to hibernate for at least a month I think. I actually think I've coped pretty well with the two weekly chemo, but obviously it's not for everyone, and I could have slowed it down at any point if I'd wanted to but I'm a stubborn cow and I just want to get this over with

So after 3 cycles of Pacletaxel I've finally started to get the tingly fingers and lost of sensation in my fingertips. Did someone say there was a vitamin that could help with this? With one more cycle to go its only going to get worse, so if there's anything I can do to reduce the effects I'll try it.

Really - I'm sorry to hear you're feeling down, the bone aches do that to you, so hopefully you'll start to feel better in yourself as these improve. I'm planning to attend a Positive Health Programme once this is all over as my brain needs some therapy too. This is the link to the programme that runs near me - you anywhere near Surrey at all?

Thank you so much - its lovely to be able to 'speak' to people who have been/are going through the same thing - friends are being great, but however they try, they don't really understand. (and the head tilt comments made me chuckle, DH and I are keeping a tally - he also gets lots of 'pats' on the arm!)

Thank you Betsy, that is really helpful - I've also currently got large (droopy!) boobs. When my consultant was discussing options, my immediate gut reaction was not for reconstruction but I'm sure it sounds really silly but I'm worried about what other people, especially my 2 boys (aged 12 and 7) will think. I'm worried it might freak the boys out - we have been very honest with them (age appropriately).

Thanks Kitkat and advice re weeklies would be great, I'm having bloods on Thursday and my chemo nurse will go through the possible side effects then but any info would be lovely.

I feel as if I'm not sure if I can be any help to anyone, but if I can, please ask.

wine I can only speak for my own kids, but DD (8) was a little eek with the scars at first (but then she is a very sensitive soul about everything) but she is fine with it now. DS (6) is not phased in the slightest, in fact he goes round telling everyone "my mum's had her boobs chopped off, she's got pretend ones now" as his opening line, so it's a good job I'm not sensitive about it!

I SURVIVED THE DAY!!

I admit I had to ask a friend to cover one of the school pick ups, and I had a very lazy afternoon playing with the youngest, but I did it! Still feeling rough, and the pain and aches are still there but I think they are slightly better than yesterday! Fingers crossed I can get a good nights sleep! Think I'm on day 6 of hardly any sleep!

Just heading for a nice bath! Time to soak my poor muscles!

Hi to all the newbies! Sorry you are here, but you have definitely come to the right place! The advice and support on here is amazing!

Will try and catch up on all today's news later. If I stay awake long enough! Xxx