Hi Ali you will feel like you do sometimes it's normal. My lump didn't feel like a lump either more like a mass of hard tissue. At first they thought on ultrasound it was 3cm and nodes looked clear but as triple neg grade 3 they said mastectomy and node sampling. When I had op 9th October turned out tumour was 5cm and 3 of 5 nodes removed had cancer. I'm having chemotherapy now 3 FEC and 3T. My 3rd FEC tomorrow so will be halfway there. 15 rads after chemo then node clearance and new boob I hope. You'll feel more settled when you're treatment starts it's all very scary at first until you know your treatment plan. Do you know yet whether you're positive or negative to the hormone therapies? We're all here for you Ali if you need us ok!xx.
And tonight it's my turn to feel rather crappy. Have a consultant meeting tomorrow to talk results of all my tests in preparation of my surgery on the 28/1. I have a 'large' tumour 4cms but it's not like one obvious lump. I found it (not in the mammogram bracket). 4cms? How did I not notice? I went to the docs as soon as I noticed and didnt stall at all. Why do they want to do surgery and not chemo to shrink it first? Another question for tomorrow. Why am I here at all? Why me :'-( I don't know what I think anymore, just want to get through this and to be braver for it. *sob*
Sorry for the chaotic post.
I'm sorry it wasn't all good news, Jan, but so pleased there was some good news and here's to wearing striped tops again!! Keep posting so we can support you through the coming treatment and I hope you can relax and sleep tonight xx
Margy60 - I'm sure your appointment was today. Do let us know your results, if you feel able to.
I had a little bit of good news today in the medical notes saga.... A lovely lady from the medical records department called to say they had expedited the collection and copying of my notes and would be sending them via Special Delivery! It was so unexpected; they could easily have hidden behind the bureaucracy of the trust's policies and procedures, but someone bothered to set that aside and show compassion. Needless to say, I cried again, but this time they were good tears 🙂 Just written a thank you card to the department as I didn't make a note of names.
Great News Jan!
Looking forward to hearing more good stuff! We all need lots of positivity to keep us going in the right direction!
Really great to hear this. Ali xxx
Hi Delly- Hang on in there- there is someone for everyone, it dosn't matter what your orientation is, your a person full of love to give and there IS someone out there who would be lucky to find you. You are just like the rest of us A PERSON, I thought I'd hit bottom when my husband the love of my life ran off with my best friend!!!!! (well it was 20 yrs ago), I had our 12 week old daughter no job and the mortgage rate was 18%!!!! But I survived even if at the time I didn't want to. Anyway all water under the bridge. Lifes been kinder to me the last 5 years, then BHAM rug from under legs AGAIN!!! Cos guess what I've been diagnosed with, but then on the positive I've meet you lovely ladies. Anyway surgeon tomorro for third time, gotta persude her to do double mascectomy and recon at same time. Sending you a MASSIVE HUG, perhaps you could start a new thread, seriously, your not the only gay lovely woman out there going through this, your TOO NICE to be alone. How you feeling,? any results yet for stomache problems. Sending a massive hug back, from one straight woman to one special Lady, who cares your gay? Your just another lady going through same fears as the rest of us
I think we all need a group hug, delly style, eh? 😉
I thought I was doing so well, went to the gym this morning for my favourite step class and instructor, always such a laugh. I felt quite comfortable with my sports bra and softie (although kept checking it was in place) and realised I have almost normal range of movement in my affected arm!
Then, I chased up the application I made for my medical notes (only the third hospital trust, yawn). I only want a printed copy of my histopathology report so I can read it all myself, digest it and make a note of any questions for my sarcoma consultant. When I was told it was still in the 'early stages' (that'll be the December effect, then - the application went in via email on the 15th December...) and wouldn't be available this week I burst into tears! The old me would never have done that, but I felt crushed by it! I've calmed down since, but still so frustrated at the bureaucracy and short-termism of the hospital's policy - I will inevitably take up more of the consultant's time at my appointment because I can't prepare in advance. Grrr!
What time is your appointment tomorrow, Jan? I know medics need holidays too, but a 5 week wait is extraordinarily cruel, whatever the reasons. I hope you have all the time you need to ask questions and understand the next steps. Please let us know when you feel able to, and scream and shout, cry and hide if you need to. There's a lovely group of ladies over in the Living with Breast Cancer board who have created 'benchland'. There's a bench in there that meets your every need....so today I sat on the Crazy Sobbing Lady Bench with quick trips over to the F**king Furious and Guilty benches. Later, I will perch daintily on the G&T bench, plenty of room for all of us 🙂
Lots of hugs, Tat x
Hope by now you have got your treatment plan, it does make it easier to cope with when you know what is going to happen, although you still have to get through the treatment. WHen I was diagnosed last May I told family and friends that I didn't want a fuss and that we should all carry on as normal, it was just a glitch!!
My husband was brilliant, very good nurse but at times I didn't want to tell him how I was feeling as I knew he was also having to get to grips with what was going on. Yes I had times when I wondered if I was going to get through it, but that was usually in the middle of the night which is always the worst time.
I had a mastectomy and by choice no reconstruction, took some time to get my head round my new shape and not feeling very feminine at times but then decided that if people think I look odd when I don't wear a prothesis then that is their problem not mine, SOmetimes it it just too uncomfortable. I am still here, life is good
I wish you lots of luck and hope everything turns out well for, don't be afraid to show your feelings - everyone has to have a down time with this horrible disease no matter how positive they are.
Hello Lovelies - yeah, we're a brave lot us women aren't we. Keep giving yourselves a HUGE PAT on the back - preferably by TREATING yourselves to something reeeally nice - whether it's nice bath smellies, a massage of facial, a nice meal out, go see a good film - comedy or nice romcom. You NEED it and DESERVE it - cosset yourselves.
I hate that you're ALL having to go through this - seriously breaks my heart. All the women on here, hundreds of us.
Quite a few of you sound to have surgery looming up soon, be it lumps or Masts. It's tough - but you WILL get through it. Personally, I would ALWAYS advise ANY woman, whatever your age, to always have recon with a mastectomy and preferably "Immediate" recon. My attitude to it being - the sooner you have your LOSS REPLACED with a permanent substitute - the BETTER and the QUICKER you'll get back to near norm again.
I've had to wait 9 years to be in a position to have recon and it SMASHED my confidence to BITS, as a single woman at 46 without boobs. Haven't had a partner since - the thought of intimacy with my boobless body being a NO NO. So I need to get myself back onto the recon horse and then concentrate on finding a good and decent partner to share life, ups, downs, take care of each other and cuddle each other. I'm gay so it may have to be Match.com as they have a sectionn devoted to women looking for women.
I miss physical contact, especially hugs and mine are pretty special ones - you know !!!!! HONEST!! Delly "spesh" hugs - do you want one ?? Coming up. Gotta get in really, really close and WRRRAP ALL of my arms round you, then I cling on for a good 3 mins at least - Nice aren't they ? I should get 5 STAR rating
Listen - you are not alone in all this. We may be virtual BUT it does still work and I wouldn't be living if it weren't for all the amazing support I had through a dreadful mental state - I was ready to do myself in, even sourced where to get the chemical from. Yes, THAT bad - No boobs, no partner, no family, no business, no income, no kids, no purpose.
Sooooooo, all that's in the past now.
Please stay in touch w2ith how you are and where you're up to and we'll be HERE for you - Okey-cokey ??
I'm so glad you had a good Christmas and new year, Kim and have a little time to build yourself up for chemo.
I feel a bit flat (lol) after Christmas and new year too, Jan. You've had a busy time doing Christmas with your girls and their partners, so you've earned that sofa time!
This week is going to be tough for lots of us - there have been lots of distractions around for the past few weeks and, from tomorrow, normal (or the new normal) life and all the appointments start again and my son goes back to uni 😞 As Jan says, keep talking, ladies!
Hello lovely ladies,
A HAPPY NEW YEAR TO YOU ALL.
Stinks this disease - doesn't it. An absolute Ba**ard of a disease.
If it's ANY consolation, I'm a SURVIVOR of 9 years following two mastectomies. BUT am waiting on test results for a long term stomach prob.
None of us want/wish to spend our lives in dread/fear of secondaries. But at the same time, we have to be SENSIBLY VIGILANT and AWARE. One never knows, quite what's going on inside of our beautiful bods - do we ??
Margy and Jan, I had had a chat with my sarcoma nurse a few days before my results appt, so knew the margins were slim. It wasn't the news I wanted, obviously, but in the 4 days before the appt with my surgeon I was able to begin to prepare myself for the possibility of more surgery. It was a tough prospect as the original surgery had been extensive, but the most important thing was to get rid of the cancer. In my case, there are only ribs left to take, so that's being kept in reserve. We're all hoping your news is the best it can be, but we're all here for you whatever happens. Hugs xx
you are right, it would be a shame to have more surgery after you are starting to heal!! In fact I went to my GP just to see if all looked okay and she said the same thing!! Oh well we will know probably on the 5th!! Good luck with your appointment and let me know how you go!! As you say, we can do this together!!
I have been told that my BC team are satified that I don't need any more biopsies of my lymph nodes which came back clear. My surgery is booked for 28/1 so I am pleased I have time to get my head around things. I know treatment plans can change after surgery because it's only when they have it 'all out there' that they can see it all clearly, lymph nodes tested etc. But having this date is a real deal.
I know I will be having a mastectomy but I am ok with it and I will have the reconstruction as/when dictated by my progress.
This forum has been tough at times reading what us women have to face but the optimism and positivity are a tonic.
We *will* get there, yes, it's not likely to be pretty in th short term but we will get there!
Take care all, Ali-B xxx
Hi Tat!! I am doing okay thanks one week post lumpectomy and sentinel node biopsy, no pain, just a bit sore to touch!! I have a follow up appt with surgeon on Tuesday 5th and am feeling quite anxious about it and worried that I may not have clear margins, that they find it in the sentinel lymph node biopsy and that the diagnosis from the lumpectomy might be worse than the provisional diagnosis from the core biopsy!! Trying to put it out of my mind as much as possible but that is not easy!! Hope all goes well with your appointment on the 11th!! Wishing you a happy new year!! Hugs Linda x
No date for surgery as yet but will be in Jan, as for breast conservation vs. mastectomy my tumour is kind of spread out rather than one lump. To be fair I am ok with the prospect of a mastectomy, rather have it all out!!
Hi Ali - Glad you are feeling calmer and in control. I discussed mastectomy with the surgeon as I also have an area of abnormal but benign tissue and he said that, in his opinion for the size of the malignent area it was OTT and was convinced that even though 'm only a 'B' cup he could do breast conserving surgery and make my breast look normal. Its now smaller than the other one but its only noticeable when I have no clothes on - just a thought xx
Hi Tat - ended up with WLE not mx in the end Surgeon convinced me to try going for the less drastic surgery when the biopsy of the second area came back benign - just hoping for clear margins now (fingers crossed), dressings came off today so I had a proper shower - oh the little things . Bit of a meltdown yesterday when I got my post-op appointment date for 15th Jan (was hoping it would be much sooner) but ok today. Thanks xx
Glad you feel more in control, Ali. The not knowing is so hard that even when you don't want to hear what they're telling you, at least you know everything and your mind doesn't try to fill in the gaps.... Did they give you a date for the op?
Hi all, I do feel more settled for talking at length to my consultant. I havent had all the results back yet but they will be having their dept consultant meeting tomorrow (where they talk about all their cases) to see if they want to do some extra lymph node tests. My initial biopsy was clear but they had a question mark about some of them. I will probably have a mastectomy mainly because I'm not so well-endowed *blush* and so it they just removed it, I'll be lopsided. They can only really make the final judgements about radio/chemo/both/etc when you have surgery so the plan can change despite what they are thinking at the moment. I feel strangely more in control and confident in their positivity. It was a good 'bonding' session with the team and I'm glad for it. BBFN. Ali-B xx
Just waved goodbye to my overnight visitors (we first met at school 38 years ago!) and hopped on here to check how everyone is. Do please update us Ali when you feel able to. We're here for you x
Jan, I hope you've had a good day today and have some things planned to get through til your results appointment next week. I arrived a couple of minutes late and flustered at mine having allowed over an hour for a half hour journey - Christmas shopping traffic, grrr!. I forgot lots of the questions I wanted to ask. I now have an appointment with my sarcoma consultant on 11th Jan so can go through the histopathology report with him line by line.
SLou and Margy, how are you both getting on, almost 1 week post mx now? Kim and Cs66 - would be good to hear how you are doing too.
Hugs to all, Tat x
Hi Ali. Just wanted to say I hope your appointment goes ok today. I'm exactly a year ahead of you (received my diagnosis on New Year's Eve - happy bl**dy New Year 😞 ). Waiting for results is horrible and it's hard to stop thinking dark thoughts sometimes. I think I spent the 2 weeks between my initial surgery and the diagnosis mostly in denial, and trying to prepare myself mentally for the results. Lots of ladies say they feel more able to cope once they have their results and treatment plan, and that was definitely true for me. There is no right or wrong way to feel about any of this rubbish. This forum is brilliant for saying exactly how you feel and the support here is fantastic.
Re. your question about going private, I am using my company private health insurance for all my treatment (except rads) and it has been great. I think the NHS is fantastic but the main decider for me was the speed that things are done as a private patient. No long waits for scans, results etc, and appointments are always on time.
Will be thinking of you today xx
Ali waiting on results is a truly horrendous time and over Xmas is the absolute pls, we all say it's the worst part of all this crap , like you I just wanted it not to be happening and just couldn't accept it, I was so angry at this threat to my perfect life and was a complete mess for a while but with results and an action plan you start to feel more in control, just try and focus on getting through today, one step at a time is the best way to deal with this I found as the bigger picture is too much and you can't second guess things, I was diagnosed in March and am done with treatment and feeling great, life does get back to normal! Lots of love Xx
PS: so many others are just enjoying this inbetween time leading up to NY but I am in this place. It makes me feel so bitter :'(
Got my appt this morning for whatever comes next. I my guts are churning with nerves and I have a long list of questions to ask. I feel very angry that I didnt notice my lump early enough as they are talking mastectomy because of the tumour size in comparison to my breast size (am only a b/c cup). I am sick of this limbo place. I was diagnosed on the 18th and still waiting on 'the plan' due to the holidays, meanwhile this thing is still inside me threatening my health. I am trying to be strong but I just feel so useless.
Ali B xx
I found out today that any possible surgery may not happen for 3-4 weeks. I don't think I can wait that long and am looking into the possibility of going private via my works' scheme. Does anyone else have any experience of having to make these kinds of decisions? I know I'll find out more tomorrow but *grrr* nonetheless. 😕
I could say that's normal, but I won't, because you'd want to slap me. I know I would 😉 I have got a lot of comfort from the forum and users who are further down the line. Just knowing you are not alone and that everyone has wobbles from time to time (and non stop, at times) has helped me feel I can get to where they are too. I hate the waiting; not knowing what's ahead presses all of my buttons, but I've got better at distraction. Please post after your appointment on Wednesday. Big hug. Tat xx
Hi Ali-B. Don't discount how effective denial can be!! Sometimes it's the only way I can cope with my dx and prognosis!
I was dx with primary angiosarcoma in the breast in October after a missed diagnosis in July 2014. Angiosarcoma is very rare and difficult to treat and my emotions have been all over the place in the past few months including going to all the dark places you have also visited, but mostly angry at the length of time it was left to grow and possibly travel. My family and friends have been brilliant as have the incredible women on this forum, and I am finding my way step by step. I support young people affected by grief and loss and, after years of training and practice, thought I had a pretty good understanding of how it felt. What I hadn't fully understood is how multi-layered the grieving process is and how quickly we can flip between feelings and back again. One image I hold onto through all of this is the waterfall analogy that's often used to begin to put into words how shock and initial grief can feel... Life was like a lazy river until it suddenly fell off a cliff and we were plunged, terrified, into the white water at the bottom of the waterfall. Keeping our heads above water can seem impossible at this point, but eventually, we move towards the water at the edge, further away from the turbuence, until one day we leave the pool at the bottom of the waterfall and are in a completely different river.
I had a radical mx 26/11 and the next step is onc appointment 8/1 as the MDT recommend rads due to only 0.5mm clear margin at the outer edge of the tumour. The waiting is very hard, like being forcibly kept in the white water at the bottom of the waterfall and I've had plenty of meltdowns. I've found the best thing for me is to keep busy and limit internet browsing. I've returned to some of my less intense exercise classes and am doing all the household jobs I was doing before the op which make me feel like 'me' again and give some structure to the day. So anything that feels 'normal' helps me and allows me to use bucketfuls of denial to get through to the next appointment/scan/test. I hope you are finding ways to get through and that the support on here is as helpful for you as it has been for me.
Thank you Butterfly and all who have responded. I am in a more settled place now but I am still angry and scared that I find myself in this situation. I find it hard to go out and just want to stay indoors in my pyjamas! I have my next appointment on the 30th Dec to discuss the next steps but I am also scared of what they might say. I want this thing out of me 'asap'. There is so much I want to say but I cant seem to find the words to say it. Take care All xxx
Please be reasured that everything doesn't stop for Christmas and lots will be going on behind the scenes. But the waiting is definately the worst bit, it is the not knowing.... If you look at any of the threads this is what people will say whatever time of year. Routine clinics and surgery don't happen but the reality is that that is just 3 days that things don't happen..... All the labs are still working Chemo and Radiotherapy are just moved around. As you say you didn't look at your mamamogram, i have never seen any of mine, i have never asked to, and thats because i wouldn't understand them. (i do have some clinical training but i'm not a Diagnostic Radiographer who interprets Mammograms / scans for a living) I think if i did see them i would be more confused.
Like some of the other ladies i am a long way on down the line. Had a large tumour ER8 PR8 which responded poorly to Chemo (which i had before surgery to shrink it). The week i was diagnosed i pretty much went into denial thinking it'll be alright but by the time i'd gone back 10 days later (you really do need time to absorb the information and process it) i wanted everything she had (female consultant) and made it very clear that my number one goal was staying alive and i needed her to make that her numer one goal. (She did and she reminds of that every time i see her)
Hindsight is a marvellous thing and i think the best thing i can say is try to take one day at a time, don't try to plan treatment / response etc in your head because it is all very changable. Trust in your team, tell them what worries you and take time to plan with them the best options for you... Good luck with your treatment and keep posting as this is one of the few places where people understand exactly how you feel and you can say things that you maybe wouldn't want to say to family / friends.
Take Care. Butterfly xxx
Hi Ali-B!! I understand how you are feeling!! I was diagnosed end of November and just had my lumpectomy and sentinel node biopsy on Christmas Eve!! It is a very frustrating time to be diagnosed with everything shutting down for Christmas but things will start moving for you soon I am sure!! As Sarah says being in limbo land and waiting is excruciating but is part of our journey and we have to go with it!! I have to wait another week for my results to see if the surgeon got clear margins and if it is in my lymph nodes and then if I need more surgery, chemo, etc, so you are not alone in your waiting, there are many of us out there in a similar situation!! I am in Australia so come on here at different times but please let us know how you are going!! Linda xx
Hope you are feeling a bit calmer, its so horrible to be in limbo-land and on hearing the diagnosis I know my brain just shut down. My diagnosis was a Grade 2 invasive lobular and the breast care nurse who I spoke to afterwards said that this has a really good prognosis and is very curable. I know at the moment it all seems un-imaginable but I can honestly say it gets easier. I was diagnosed on 3rd December and had my surgery on 22nd still nervous about whether it has all been removed etc but last night I actually had a full 8 hours sleep !! (Mind you that may have been helped by a couple of glasses of wine!!).
Good luck, if you need to chat, my computer is always (well almost always) on
Thinking of you all, I am 21months down the way, life is much better now,,, I found this little booklet such a brilliant read. It can be ordered on hard copy (as I did), or to an e-reader device.
Best wishes ladies, hang in there. My GP prescribed some strong antihistamines that enabled me to sleep, but also allowed me to work in the day in these early days. A horrible place, it does improve once the plan is known x x x