Greetings from a newbie in Dorset!

Hello ladies

Just thought I’d introduce myself before you see me posting left right and centre on every post. I don’t ‘do’ many forums, but when I do, I do!!!

I found this website a while ago and signed up, posted a huge reply to someone’s post and lost it, so wandered off again.

Had a wobbly this week, after stupidly starting to research IBC online and my Mummy found this forum, and in partcular ‘I’m still here 10 years on’ thread, which as you can imagine, made me ecstatic!!!

So - a bit about me:
35
Living in Poole, Dorset
Lump in right armpit in 2004 turned out to be a fatty lump which disappeared as quickly as it arrived, as they said it would after an ultrasound.
Lump in left armpit noticed in Feb 2009. Note to self - must keep an eye on that. Promptly forgot all about it.
Approx March/April 2009, noticed left breast getting firmer. Thought it was probably just hormones.
April/May 2009, boob still firm and getting bigger. Hormones (what was I thinking???)
end of May 2009. Lump in armpit still there, breast hard and nipple starting to invert. mmm…better go to the doc (when ‘I have time’???)
15th June 2009 - GP appt. Already decided before I saw her that I knew it was cancer. Brilliant woman. Told me I looked like I had a really bad boob job!!! She would be the first at my party if she was wrong, but she was sure it was cancer.
19th June 2009 - Hospital appt. Have to do biopsies, ultrasound, mammogram but ‘yep, you have IBC’
CT Scan shows nowhere else.
Have 4 or 5 lumps + somewhere round 5 or 6 nodes infected (isn’t it strange that I ignore the detail - just get on with the treatment, I say!)
Due for 6 x FEC but after 1st 3, ultrsound to see how it’s going shows all lumps reduced in size (hurrah) but 3 lumps they didn’t know were there - unsure if new or just didn’t see before. So change to 3 x Docetaxel (same as Taxotere I think?).
FEC, I was fine, hair fell out and a bit tired, but normal.
Docetaxel not so fun. All sorts of side effects (no sickness tho, yay!) and absolutely exhausted.
Last chemo on Tuesday. Yippppeeeeeeee.
See surgeon on 20th Nov.
Want a double mast I think.
Not having Herceptin.
Due for Rads after mast, but not discussed this bit since initial diagnosis.
Generally, I am really positive, but after feeling so knackered for weeks now, had a bit of a downer this week, the worst was thinking I am likely to be dead by the time I’m 40. Not scared of dying, just don’t wanna - I’m too busy and love my life too much. So watch out - you guys will have to put up with my ramblings for a long time yet!!!

Hi Pash…:smiley:

Sorry that you have had to join us but welcome…:smiley: Do you know if the hormone receptive…? (they will have said you will be having tamoxifen) I was at the same stage as you last year - had my final docetaxol the last week in Oct and had my mastectomy at the end of November… It’s funny as i also only started posting on here just before my op… (having joined when i was first diagnosed…)

Take care and chat away :smiley:

Theresa

Hi Pash,

Sorry you’ve had to join us and so young too. IBC does seem to target pre menopause women. Not that that will be any consolation. I’m 48 and a little bit ahead of you. I diagnosed myself in March 09 by googling (as you do) mastitis, which is what my GP said it was. Took myself back to GP and insisted on being referred to a breast clinic. Sure enough it was IBC. I have been lucky enough to get treatment very quickly so there is no spread to lymph nodes or anywhere else. Had 3 FEC and 3 Tax and like you, the Tax was the worst. I had my mastectomy in Sept and opted to wait for recon so that I can have rads asap. Due to start those on 4th Nov. I’m very tired now and just want to get it over with. Rads finish on 18th Dec and then there will be a big celebration.

I see you found the 10 years on post. It is very encouraging and the treatments are so much better than even 2-3 years ago. Best of luck with the rest of yours. Hope you don’t get too down.

Jan xx

Hi Theresa - how odd that our timings are similar but for a year! I’ll be watching you, lady! But I only want the good bits, please!!! I need to get up to speed with all the lingo, but I know I’m not having herceptin and I don’t think I’m having tamoxifen, either. I will ask when I go to Onc on Tuesday before chemo. Is there a ‘good’ or ‘bad’ or is it just different?

Hi Jan - Bloomin googling things has scared me half to death this week. Thank goodness you did it though - I’m sure you’re not keen on the outcome, but at least you know, eh? Weird how different people react to the same drugs. I’ve heard the exact opposite of what we both experienced. ‘Everyone’s different’ is a phrase that drives me nuts but it appears to be very true! Can I ask, do you think the tiredness is still the chemo in you, or the emotional exhaustion, or are you on some other meds? I am so used to going 100mph and the exhaustion since being on Tax is driving me cuckoo!!!

Nice to ‘meet’ you both. Here’s for some ups and downs together, but hopefully a few giggles along the way.

x

Hi Pash,

I’m pretty sure the tiredness is just a combination of all the treatment. I’m not on any meds at the moment and I don’t think I could put it down to one thing. I was a very independent person working long hours and coping with a stressful job before the treatment started. I have found it very hard to accept my limitations and ask for help but my family made me see sense. I am much less tired now than I was while on Tax. I sleep for about 12 hours a day which is helping my body recover.

You do get some laughs though. I went out in the rain today and wisely left the wig at home but my lovely pencilled in eyebrows ended up sliding down my face. Not a good look I can tell you :slight_smile: Still it is Halloween.

Well - and I thought we were so rare too!I’m also in Dorset under Poole Hospital so do ask if you want any insights about future treatment - I’m just a few weeks ahead of you! Who’s your consultant?

On a positive note, surgery is done out of ward B5; THE most fantastic beds, uninterrupted views over Poole Park & Poole Harbour AND a balcony to sip your coffee on!

I had mastectomy in September following FEC/T chemo, am now on Tamoxifen and am awaiting radiotherapy which has had to be delayed due to fluid build-up on chest wall following surgery.

Not good to be in this club but at least you have no spread - that’s brilliant!

One thing I would say (though it may have only been me!)is that it was the LAST chemo session that REALLY floored me/took stuffing out of me. I believe it was the cumulative effect of the previous 5…Don’t EXPECT it but should it happen, at least you know it’s not unknown!

Hi JanB - I had a laugh with the wig last weekend when I went to a wedding with my boyfriend. I’d only met the bride and groom before. The wig lasted all day, but after a boogie on the dancefloor it was hot and my head was itching. I was worrying about the ‘etiquette’ of wig removal. The BF helped my out by just whipping it off (after checking it was ok)…the looks on peoples faces was soooo funny. If Beadle was about, I could’ve made a few hundred quid, I’m sure!!!

Hi Haxted - wow - I did ask at Poole if they saw many IBC cases and they said no (obviously), but also commented that they had 1 other at the moment…so guess it’s you! Aren’t we the special ones!!! Loving the accommodation report :slight_smile: Should I send a postcard when it’s my turn, lol!

Cos I’m new, I don’t know how to see your posts, but I’ll go and look you up so you don’t have to retype all your details.

Bit nervous about the knackeredness after the last chemo. Gonna make sure I have everything going to help me through it cos 9 days after final treatment, I’m orf to Spain for a week!!! I’ve warned the boyfriend that I may need piggy backs everywhere!!!

Not sure if I’ll have tamox - I think they said no originally, but I’ve had that many drugs for this and that, I forget! Def not having the herceptin.

Seeing Mr Pain on 19th Nov, but I think I want a double mast and been told by BC nurses that I may have to see Miss Evans if that’s the route I go down. Will post again.

How are you feeling now? How quick did your tiredness go…that’s the bit that drives me most nuts. I have no sickness. Various minor(ish) ailments that altogether drive me nuts, but I will be happier when I am not so pooped all the time!

xxxx

Hi Pash

Welcome to the club no one wants to join.

I am also an IBC lady although at 62 considerably older than you. I was DX August 08. 6 months of chemo(AC then Tax) and surgery Feb 09. Rads delayed due to seromas but finally completed end of May. I have been on Herceptin now for nearly a year with only 2 more doses to go, then Letrozole for the next 5 years.

I have also taken life at full pelt and found the lethergy during treatment sooo frustrating. I would say now though that my energy levels are back to what they were pre treatment.

I live in London but my most favourite place in the whole world is Dorset, specifically Swanage, not far from where you live. I find that when we get to the dorset coast life just slows down and there is time to relax and watch the world go by. I have been lucky enough to get there 4 times this year having only just come back this last weekend.

I only needed a single MX for the BC but persuaded my surgeon to do a bilateral because of a rotten family history. I hope that they agree to whatever you want.

Ask whatever you like and I will try to give you the answer as it happened to me.

Take Care

Andie

Pash, I only joined the forum myself last week to ask if anyone else was having a problem with a seroma (fluid build-up on chest wall) post-surgery/pre-radiotherapy & will continue with that thread as it gets resolved (or not!!) for others who might find themselves in a similar position to benefit from…

My post-chemo “hit” slowly diminished over the six weeks until surgery but never really recovered to pre-chemo levels. And then, with surgery came its own tiredness. Personally, I’ve found it’s pointless to fight it & try & push through. The onslaught our bodies have been under; first the cancer itself, then being poisoned & then operated on, is huge. Having recognised this, I am trying to graciously sit back, give the poor old body a chance to rest & recover and accept all ofers of help when needed. I’ve likened it to being like a dog on Sit & Stay training; the reward for patience & obedience will be worth it! But then I’m older than you: 51. Plus I have 13 & 16 year old youngsters whose hormones are exhausting me anyway!

Miss Evans was my surgeon and Dr Goode (with locums during his absence) my oncologist. I think they’re recruiting two new oncologists at present.

I was advised not to pursue bi-lat MX on the basis that it’s such major surgery & “if it ain’t broke, don’t fix it”. But my case is slighlty different to yours in that I have spread to the bones & lung. I’m sure thy will give you the advice best suited to you & it’s then up to you to decide which way to jump.

By the way - did you know that we can have free aromatherapy foot & hand massages in the Dorset Cancer Centre (where chemo is administered)for as long as we are being treated for cancer? Might help to relax you?

Hope tomorrow is “uneventful” for you!

Hi Ladies,

Haxted, I completely agree about giving in to the tiredness. I’ve found that out the hard way. I thought I was doing well and started to do “normal” things like housework, shopping and walking the pooch but really set myself back. Lately I’ve been sore all over and my legs feel like lead. Need to be fit for the rads from later this week so having a few days in bed to try and ride it out.

Pash, I hope you get fit enough to enjoy your holiday. I managed quite a few long weekends away during my treatment and they really helped but do take it easy.

I’ve only risked going wigless in the past week as my hair is coming back nice and thick. Before that I looked too much like my father for my liking without it. :frowning:

I looked my brother when i was bald / the hair was first coming back… lol

Definatly agree to listen to your body… my energy levels are getting much better now… i had first mast last november (finished chemo late last oct) , finished rads in mid feb, had second mast in sept… but even now occasionally i will just take myself off to bed early… hmm actually thinking about it i recently went for lunch with a friend and ended up in bed by 5.15 lol (and no alcohol…)

My surgeon was also unhappy at the idea of a double mx last year… in the end i started getting changes in the “good” breast earlier this year so ended up having the second mx on sept 7th.

Theresa

whoop do dooooo! That’s my chemo finished! So happy :slight_smile:

Op in probably 4 weeks, then radio 4-6 weeks after that - 10 mins every day except weekends for 3 weeks. Need to speak to the surgeon on 20th about the double. But I am pretty sure I want it and the oncologist said it sounds like I have thought about it a lot and have good reason for requesting it, so we’ll see…

No Herceptin for me but I am Oestrogen Moderatly Positive…they will test again when the op is done and I may end up with Tamoxifen or some other drug whose name I have forgotten already…

Just gotta kick any side effects into touch asap cos I’m off to Spain a week on Thursday to lie around and do notalot!

Thanks for all your support and kind wishes…right backatcha x

ps - Haxted. Tracey turned up today to give me a foot massage. I still stink from it!!!