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Lobular cancer invasive

122 REPLIES 122
Fightingit
Member

Re: Lobular cancer invasive

Hi, I was diagnosed in January 2013. I'd had a lump for a while, the doctor examined me, looked at my mammograms and said it was nothing. Anyway due a Mammagram Jan 2013, so the week before went to see him and he did a letter for the radiologist. Had the mammagram, and the radiologist immediately made me an appointment for a biopsy which I had the following day - awful. Waited a week and had a further appointment with a surgeon at the hospital, and the following day the Oncologist who has been treating me. I live full time in France so my treatment probably is a bit different. Within 2 weeks of the initial diagnosis I had a porte cathe fitted which is like picc line only in my collar bone. And I had my first chemo on February 13. By then I'd also had an MRI Scan, and had a bone Scan on the Nuclear Scanner at Limoges a few days after my first chemo, happily clear. I had 3 x FEC100 and 3xTaxotere (horrible) then had a full mx of my right breast in which they found 7 of the 23 nodes were cancerous. Also found bits of the tumours which had been 8cm and 2cm. Bits is good think the chemo nuked them. I am now having 25 sessions of radium therapy - which started 3 weeks after my operation. Felt for a long time I had been hit by a truck, also initially they thought I had Inflammatory Breast Cancer, which is the motherload, and prognosis is frankly terrible. So to have this is stupidly a bonus. Not bothering with reconstruction, currently have a post-op prosthesis which is fine. And go for my gel one once I've finished the radium therapy. It's been incredibly tough but have had such wonderful support from my neighbours and friends that it really has been made easier. Feel that I'm finally seeing a bit over that parapet, and even my hair is growing again, but think my nails might take a bit longer. I had two sort of nodes on my right lung prior to treatment after the initial MRI Scan, but hopefully the chemo and Radium will have got rid of them, my Oncy wasn't sure what they were. Final MRI is 26 September, and then a meeting with the Oncologist, he is putting me on hormone therapy, so will also have a bone density scan. Think after this I'll never be frightened of anything again. Power to us all nobody knows how tough this is and how long it takes until they experience it. xx
CornishK10
Member

Re: Lobular cancer invasive

Hi everyone, I have just been diagnosed with Primary Breast Cancer - it's ILC and I have a grade 2 quite sizeable tumour (almost my whole breast and I have big boobs). So far I know to expect a mastectomy and I instantly considered a double mx (see I'm catching on with the abbreviations!), chemo, radiation and hormone therapy as it is oestrogen postive (ER+ ??? - I will get the hang of this!).

My diagnosis was on Friday 2nd August, a day I shall never forget I suppose - I am 38 years old and have a toddler son aged almost 3 (in October). Friday was a blur, Saturday also a blur and surreal, Sunday I can't remember at all (nope hang on, Dad took us out to lunch - can't remember anything else!), Monday my husband came to see me (as I was staying with my parents at the time doing our normal regular visit and stay as I went to docs here whilst Mum took care of son), Tuesday I spent with hubby and son to the park doing normal family things and Wednesday my sister returned from holiday so I could phone her to tell her the horrible news (I wanted her to be on UK turf before I dropped the 'bombshell' and I didn't want to ruin her holiday or have her rush to a foreign airport desperate to get a flight back home early). Wednesday my Dad also spoke to his friend around the corner (as I believe he needed to speak to another man) so I guess we have started to 'tell people'.
My emotions are obviously all over the place and I am now waiting for the results of my MRI scan - aha that's what happened on Monday as well - couldn't remember because the noise confused my brain!!!!!!! OMG the noise of MRI imaging and I had ear defenders on, I have joked about it sounding like being a 'hotdog in a bun' and like being in a sci-fi movie being attaked by crazed daleks!!
Anyway, I have a billion questions to ask of course, though in my mind I have a good idea of what's going to happen though nothing can truly prepare you for the 'actual' process I suppose until you're in it and living it.
I guess all I can ask is for your comments or suggestions. I have already signed up to the 'younger women's forum' in London in November, I hope I shall be well enough to attend - I am sure I will be (she says fingers crossed).
Bye for now and hopefully chat to you all soon.
Kristalea
Wattie
Member

Re: Lobular cancer invasive

Hello have popped in to say I'm glad there is an ILC thread going as I started one about a month ago as I did not know about this one. I am also a February valentine!
I was diagnosed with grade 3 Her2 + invasive lobular cancer last November. It was 11mm and I had a lumpectomy. I had 2 nodes positive so needed chemo. I am living and having all my treatment in france. I have just finished, 3 weeks ago, my chemo, I had 3 fec, 3 taxotere, I will have 18 herceptin, 4th herceptin tomorrow, 30 rads and then either tamoxifen or anastrozole. I had an MRI of both boobs before surgery and when I finish rads they are going to give me another, not that they are worried but they seem very thorough here, I mean 30 rads!!!!!
they have said that in the future I will have regular MRI as well as mammogram and ultrasound as ILC is hard to detect, so I suggest you girls try and push for this with future check ups too if not offered.
will keep in touch now I know this is here
hugs to you all
karen xx
northumbrian1
Member

Re: Lobular cancer invasive

Hi
I tried to get on here 2011? but managed to contact TEDDS in midst of my techno confusion and left forum there! TEDDS and I have emailed, rung & even met up - tho of course every breast cancer stor is individual.
I went to all the GPs in my large practice for 2+ years-saying there was something wrong with my right breast- the newest lady GP finally referred me; I had so many breast care nurses in the pre and diagnosis appointments I didnt identify with any one of them. I was diagnosed Oct 2011 in 2 seconds by my surgeon who is just about to retire in Sept. Lobular HER2 neg.(just copying what is on RVI letter!) There was doubt about size so MRI was briefly mentioned but I am claustrophobic & it didnt seem too important (was that shock) so it was skipped over by the surgeon. Surgeon mentioned 'Reconstruction? No come back to me in 18months'.(Why ? is lobular more likely to come to other breast before then?)
Mastectomy of right breast. SNbiopsy showed nothing in lymph nodes. I opted for FEC and have now been on Letrozole (isn't the whole world?!) since May 2012. Some aching joints and a few night sweats but I am ok. Now I have aching in my left breast. Could be side effects of medication but I am panicking. How does one check out the possibilities of another elusive lobular breast 'spider's web'? Are MRI's something I can ask for? who do I ask? Surgeon or oncologist? Are there open MRI scanners? are they NHS? How much do they cost to go privately?
I am on the waiting list for reconstruction. I don't have enough fat on my back for one of those so I am down for a abdominal flap.
BCCare does not do anything in the NEast so I feel very much on my own- I called at Maggies centre on Mon. Got shown round by a volunteer; oh God!Very ill people.
& today tears hit me for the first time in 2 years.

torchy_Kathlee
Member

Re: Lobular cancer invasive

Hi janebod and all.
I am new and enjoyed reading your posts, however my story is not so good, its much more anxiety, as I was unable to have chemo because of other health problems, anyway enough of that. I had mx and rads and found it was not so bad. I want to say to janrbod, seroma is a problem mine has been slow to clear but its getting there, sometimes it disappears but its getting less and so is the pain, in fact its more uncomfortable, I thought it was lymhodema developing but physio says not, sore arm pit now and again, and its now 10 months since surgery, so it takes time for some, I find soft massage circular movement helps me and execising gently.
Pleased to have joined torchy Kathleen
janemod
Member

Re: Lobular cancer invasive

Hi Julie, great to hear from you. Sounds like you are really getting on well now, are you recovering from your surgery. This is a strange old thing, up and down with emotions, in and out of the hospital, you are so right, it will be good to get back to the way of living that we know. I know what you mean about being impatient, I am so stuck with this Seroma, and have been told it won't even start to get better until my rads have finished, just seems to be going on for ever. This evening I went for a long walk with my husband and my daughters dog, we walked for miles, such a lovely evening, my boob is now not so sore, so hopefully I can get back to exercise soon, I need to as I have put on a bit of weight, first time in my life and hate it, as for tamoxifen I am having a terrible time, I have such hot sweats all the time, day and night, it disturbs my sleep, and making me feel really miserable. I am going to talk to the doctor tomorrow. Your trips you have planned sounds amazing, my daughter has just come back this week from Italy, she loved it. As a hobby we all ride classic scooters, hence my name, I have a 1961 Lambretta, I would love to ride it in Italy. Maybe one day, or just fly out there and hire one, but it won't be like my lovely scoot. Well take care Julie, chat soon. Jane XXX 🙂
LadyJulie
Member

Re: Lobular cancer invasive

Hi Jane and Deb, Saw your posts so thought I'd drop in and say hello.
So pleased you are getting through rads as you are Jane, with just one more week to go. It'll soon all be behind you, me and Deb still have that joy to come!
I met my Oncologist this week and he confirmed 15 rads sessions required. I'm going for the CT scan, measure up and 2 tattoos on Monday (15/4) but the treatment doesn't start until 2 May until 23 May so everything feels really long-winded to me at the moment. Not that I'm complaining, I'm grateful to be on the road to recovery and in such good hands. Just impatient, wanting to get my life back on track rather than it being a series of hospital appointments.
I'm now on day 16 for Tamoxifen and so far no SEs but it's still early days I know. How are you getting on with it Jane?
Now that I have had my rads dates confirmed, we are going to Ullswater on Tuesday in our motorhome for a few days. Can't wait, we were supposed to be going to Italy next week so have delayed that trip until August. And I'm fancying a cruise to the Norweigian fjiords in June as a treat to look forward to.
I hope all is well with you Deb - we'll probably be having our rads at the same time. I am being treated at Castle Hill, Cottingham by the way.
Take care all and have a lovely weekend - it's great to see the sun shining today

Julie xxx
janemod
Member

Re: Lobular cancer invasive

Hi girls, just finished my 3rd week of radiotherapy, just one more to go. My boob has now turned red, and getting a little sore, the nurses have given me some hydrocortisone cream to help. Tiedness is setting in too, but not as bad as people said it would be. My Seroma has still not cleared up, which is such a shame, because my scar is fantastic, you can barely see one of them. I could be up and running by now, my friends are saying I look like my old self, but I am dragged down with this ruddy Seroma. Hope you guys are all getting on well and finding recovery easier. Well going to sign off now, want to watch chatty man, love him, he is so so funny. take care girls. xxxxx
janemod
Member

Re: Lobular cancer invasive

How weird is that, You beat me to it. Didn't realise you had a daughter older enough for Uni, which one is she at? If you go on, you tube, and type in cancer girl dancing to Kelly Clarkson Stronger, you should find her, I love it 🙂 No I have not been manhandled just yet, and still have no pain from radiotherapy, the nurses are lovely, such a big team, I do have a good laugh, once I get in there. Xx
janemod
Member

Re: Lobular cancer invasive

Hi Deb, how are you getting on, hope your recovery is going well. Not sure if you are back to work yet. I have now had 12 rads, just 8 to go. Can't wait to finish, so I can get on with recovering from my Seroma, nothing is going to get back to normal until then. The travelling is not too bad, have found a shorter way to cut down on some of the time, except I did not allow for the appointments to run late, that's what's happen when you have them at the end of the day, I have had a couple early then went back to work, but found it a bit tiring. Do you know when you are starting? Take care Deb, lots of love XX
Debcully
Member

Re: Lobular cancer invasive

Hi jane
no im not driving yet.
Sounds like you had a nice break. Lots of shopping 🙂 and time with your family 🙂
my daughter is back from uni so it has been lovely to see her.
are you back on the radiotherapy now? Hows it going still no pain? Im seeing surgeon again this week just for a check up and then next week meeting with radiotherapy people.
do they have to 'manhandle' you into position?
no havent seen the video. I'll look out for it. It will no doubt be on facebook somewhere lol
hope your seroma has improved
take care
debbie xxxxx
janemod
Member

Re: Lobular cancer invasive

Hi Deb, How are you? are you out and about and are you driving yet, I waited for 2 weeks before I tried, but was not really great probably for at least 3 weeks after surgery. Hope you have had a nice easter, it was great to have a little more time of work spending time with the family, my new little granddaughter is so gorgeous, such a little poppet. Also I have been shopping too, so much just lately, the shoe boxes are piling up, but I love it 😉 I am nearly half way through with the rads, number 10 tomorrow night, then 10 to go. They let my daughter go in with me tonight while they were setting me up, she was interested in what they were doing to me, which was good of the nurses. I not sure if I am feeling tied, having them at the end of a working day, plus the journey would probably make any one tied, so when I get home, dinner, a soak in the tub, and crawl into bed, by then, it's feels like heaven. Meant to say before, have you seen the cancer girl on youtube dancing to Stronger, by Kelly Clarkson? made me cry, this girl amazing, she is now my insperation, Chat soon. Lots of Love.XXXXX
Debcully
Member

Re: Lobular cancer invasive

Hello 🙂
glad to hear that your ok on one side at least!! Mines not a constant pain thank goodness but it just builds up during the day and is really annoying!
hows the chemo going?
probably will have a tattoo and nipple reconstruction cos i hate not having a nipple altho thats a long way off yet.
havent started radiotherapy yet
deb xx
millymolly_m
Member

Re: Lobular cancer invasive

Just spotted you on this thread Deb. Sorry to hear you're still having pain. Hope you've come to terms with the look of your new boob. Mine doesn't bother me at all now and my SNB left side is all free from numbness but my right axillary clearance is still very numb. Are you gong to have a tattoo? Don't think I can be bothered at my age!
All the best,
Mandy x
Debcully
Member

Re: Lobular cancer invasive

Hi
ive been to the haven a couple of times. Had a aromatherapy massage and reflexology. It was really nice just having a bit of pampering. Booked in for reflexology week after next also. Its a really nice place. You should book in for a treat for yourself 🙂
deb xx
Nextstep
Member

Re: Lobular cancer invasive

Deb - just thought. If you want to go to the Haven and would like someone to go with I am more than happy to meet up and go with you? It might be a bit less daunting to go as a pair?
Nextstep
Member

Re: Lobular cancer invasive

Hi Deb - I have been on the website for the Haven but haven't been there. I looked at events there and there didn't seem to be much on and I didn't want to just turn up. Also I feel a bit of a fraud as there will no doubt be lots of people there who are undergoing chemo and rads and basically the hard bit of my treatment is over with the mastectomy,I just have to wait for the pain etc to fade away (hopefully!) and keep on taking the Tamoxifen. I kind of feel I would be taking up resources which other people need more than me, if that makes sense!
Debcully
Member

Re: Lobular cancer invasive

No i havent seen that i'll have a look.
Found the treatment very good but then again ive never had private to compare. And while i could appreciate having a private room i think i would prefer to be on a small ward where i could have a chat lol.nand i must say the food in jimmys was really nice.
Rothwell isnt far. Have you been to the 'haven' at all?
and good for youre son bless him. I was walkiing round asda other day and felt like someone was gonna knock me as it was quite busy. Not been to trinity yet. Nearly went for the opening as my mum and daughter were going but after i saw the news thank goodness i didnt....it was hectic wasnt it?
Deb xxx
Nextstep
Member

Re: Lobular cancer invasive

Hi Deb,
I am in Rothwell but work in the centre of Leeds. I think you are about a week behind me and I am pleased to tell you that it must be about a week since I lost that red hot poker pain - you sometimes don't realise a pain has gone until someone else mentions it! I don't know if you have seen it but I have posted a diary of my progress under the thread about treatment: surgery. It might help to see progress being made, even though we haven't had exactly the same procedure.
I had a bit of a mix of treatments. I was diagnosed at Jimmy's after a referral from my GP (who told me she thought it wouldn't be anything (just like last year when I actually had skin cancer!)) Because I have private medical insurance through work I discussed private versus NHS with him and decided to transfer to see him privately at the Spire. He told me the care was just as good at Jimmy's but it is nice to have a private room (and the food is better!). I also went to Jimmy's for the radioactive isotope injection. How did you find your treatment there? Probably one disadvantage of private is that you don't have other patients to talk to.
I went to investigate the new Trinity Centre in Leeds today. I took my ten year old who was my bodyguard. When it was busy he stood in front of me as I was frightened of getting knocked - he did a brilliant job. I am working on building my confidence ready for a return to work (wonder if I can take him with me )
Debcully
Member

Re: Lobular cancer invasive

Im in leeds also nextstep...pudsey. Where are you if you dont mind me asking? did you have your surgery at jimmys? And get you had surgery on 1st March and think you're going back to work next week.
Think it must be nerve pain that ive got and mine also feels supersensitive when anything touches on it...like its rubbing when its not....its bloody annoying. Thats on the boob and then at the back of my armpit is where i get the shooting/ boiling hot pain lol i tried to put a t shirt on the other day and basically 'got stuck' lol the pain shot through me...i jumped a mile...my OH who was trying to help jumped a mile...and i sort of had my arms crossed slightly above my head and darednt move...burst into tears and was saying ' you'll just have to cut it off' as he was saying i dont think its a good idea for you to put this on lol....anyway we managed to get it off ( without the scissors lol) which was really good cos its a fairly new t shirt. Can laugh about it now and have been sticking to my strappy tops and baggy jumpers since.
god i am such a wimp sometimes lol
i also use my spray on deodrant on my good armpit and a roll on on the bad one lol...it keeps the stink away....altho still feels reallly weird rolling it on.
hope the seroma is easing jane and bet its nice to have a few days off from rads and your 2 and a half hour round trip...hope the easter bunny is good to you 🙂
deb xxx
janemod
Member

Re: Lobular cancer invasive

Hi Maggie, Thank you for your advice, I will ask the nurse when I go back on Tuesday about this lemon juice, I have decided to buy another bottle of perfume, and wear more, over perfume has got be better than stinky old me. Thank you again, janemod XX
mggdggn@yahoo.co.uk
Member

Re: Lobular cancer invasive

Hi Janemod, try lemon juice for underarm.... I used to buy jif lemon in the bottle and put onto cotton wool and clean under arm, if I had more time I would put the juice into a spray bottle and use as deodorant.... hope that helps you. Must advise I hadn't had rads at the time, so please be mindful of sore skin.
Maggie x
Nextstep
Member

Re: Lobular cancer invasive

Thanks janemod. I have to count my blessings - no rads or chemo and I seem to be able to sleep fine. It just builds up during the day and more so if I wear the softie. I am going to take some ibuprofen and go shopping - either the tablets or the retail therapy might work.
I don't think the Tamoxifen is bothering me (YET!) but I have only been on it for a few weeks so I am not counting my chickens. I use my old spray deoderant under my good arm and roll on Sanex under my bad one - how mad is that!
It must be really hard, feeling smelly,even if you aren't to other people. I know I was desparate after the op to have a proper shower and wash my hair. One day you will be through it and will look back and laugh at your stinky self! Just keep looking forward...
Best wishes
janemod
Member

Re: Lobular cancer invasive

Hi Nextstep, love the name. My pain sounds like yours, one minute I am fine then suddenly I get a shape shooting pain down to my nipple. Its been 9 weeks since my surgery and have developed Seroma, hence the pain, at first my BC kept saying it was early days of surgery, but I knew in my heart of heart something was not right, I was fine for the first couple of weeks, then this pain started. I know what you mean about taking tablets, I never took any thing till I had cancer, but you have just got to get through this and if it means these tablets for a while, I think you should. I am on a pain killer for nerve pain called Gabapentin 300 mg capsules, I take 1, before I go to bed, which helps me through the night and codeine or paracetamol in the day. How are you getting on with the Tamoxifen, those sweats are something else, which now for me has become another problem, I have started my radiotherapy, they don't want us to use deodorant and not for a while after you finish them, it is so embarrassing when I lift my arm in the machine. pew, they said that I was, hypo sensitive to it, but honestly, I know a bad smell, when I smell it. Still trying to work around this, I have my rads at the end of the day, was rushing home to wash, but they he ask me not too as I will make myself sore. So 6 rads in, its like going back to the beginning. My girls will be reading this, and thinking OMG. Take care Nextstep XX
Nextstep
Member

Re: Lobular cancer invasive

Hi ladies, hope you don't mind me posting on this but two things caught my attention.
Debcully - I am another Yorkshire girl - in Leeds.
Janemod - do you mind me asking about your nerve pain? I thought I was doing really well originally and have hardly taken any painkillers but what I have been calling my sensitivity is starting to get me down. The BCN called me today to see how I was getting on and she says she thinks I have nerve pain. What is your pain like? My difficulty is that I don't have continuous pain; if I stay still there is nothing, but if I move and clothing touches me, expecially a seam or the edge of a bra it is really sore (as if I was wearing something new that was rubbing badly even thought it may be barely touching). It means that I am struggling to get anywhere with wearing even my softie with a crop top; the pain builds up over the time I am wearing it and it starts to feel as if the softie is really pressing against me. She has mentioned some different pain relief but I really don't like to take a lot of tablets; it's bad enough having to take the tamoxifen, but I accept I need to do that. It may be that I don't have any choice or I just have to stick with the pain, but I want to start a phased return to work the week after next. (I had MX and SNB (4 nodes removed) on 1 March). How are you managing?
janemod
Member

Re: Lobular cancer invasive

Hi Deb, I wouldn't worry about still being on pain killers, you have had more than most, for a lumpectomy. I have been on them now since surgery, and that was 9 weeks ago now. I go back from the hospital tonight at 8pm, and going back to see the doctor in the morning about the seroma. I did wonder where every one lived, I am in Suffolk, maybe we could all meet up one day, when we are free from pain, yeaahhhh. Take care Jane XXXXX
janemod
Member

Re: Lobular cancer invasive

Hi Julie, That is absolutely, fantastic amazing news, I am in tears, so relieved for you, was so scared when you did not post any thing last night, but glad to see your message. Don't forget if you have had cancer, you can get the a prescription exception certificate form from your doctor, because you need to collect Tamoxifen every month, not sure why, but probably its an expensive drug. Reading your post you are doing really well with the pain, you are a star, I have been on pain killers all the way on and off, now I am on one for nerve pain. I hate this, really fed up, so want to get back to normal. Had another rad late this afternoon, running late again, so I didn't get home till 8pm, not that impressed with the hospital, its old, first day machine broke down, always running late, and only had 4, with 16 to go, it better improve. Well you take care, Jane XXXXX
Debcully
Member

Re: Lobular cancer invasive

Hello
as far as pain days are ok as long as i keep on top with the pain killers (It's been nearly 3 week now and the jumper i had on was a hoodie!!! and was the first time i had managed to get one on rather a zip up top lol) Tried to come off the codeine last week but the pain got a bit too bad so being the wimp i am was straight back on them again lol. Im on diclophenic, codeine and paracetomal which i take alternatively.
Only problem is the codeine is renowned for making you constipated so thats why i tried to come off them first but its not too bad on them And id rather not poo than be in pain 🙂 ( i just got more from the docs tweetypie when i was running out)
Due to the nature of my job i wont be back till i'm a lot less reliant on the painkillers and need to be able to drive again.
i also wont be doing rads until im not as sensitive and have been told there is a 10 week window. Good to know that you're not suffering with that as well tho jane apart from the indignity of having you're good boob strapped down lol
Lady julie we are all waiting with baited breath to hear your results
and tweetypie i'm not a 100 per cent sure but i had an snb and yes had to wait till i got my results to see if i needed further treatment re that i.e. chemo
where are you all from anyway? Im in Yorkshire
deb xxx
LadyJulie
Member

Re: Lobular cancer invasive

Hi ladies, Sorry to keep you in suspense about my results but I received great news yesterday - my surgeon confirmed that all the cancer has been successfully removed along with 1cm tissue, all clear and no nodes affected I was so relieved I burst into tears, just overwhelmed and exhausted.
So now it's Tamoxifen (pick up the prescription tomorrow) and an appointment with the Onc to discuss rads on 10 April.
My 4 lovely cousins took me out to celebrate last night and we had lashings of bubbly I kid you not!
Tweetypie, I never had a great deal of discomfort after my op and didn't need painkillers (paracetomol) after a couple of days but I do still feel sore on the scar under my arm one month on and have developed cording about 4" long. It's not painful and I still have full movement of my arm and am doing my exercises religiously every day. My surgeon wasn't concerned about it when he examined me yesterday, I am hoping it will just go away. I think time is the best healer, my hard scar tissue on my breast seems to be disappearing slowly - I didn't like the feel of that at all, and I also hated the numbness in my armpit but that's coming back now as well. I'm not sure if this has been of any help to you at all, but things should improve a little more each day.
Jane I hope your rads treatment is still going well for you now that you're a few days in and that your seroma is starting to heal.
And Deb, sounds like you're still recovering well and loving having the time off work - make the most of it .
Love to all - here's to another week of great progress, and hopefully a nice Easter Egg or two at the end of it. Mine's a Thorntons Strawberry Trifle one would you believe?
Julie xxxxxxxxxxx
Tweetypie
Member

Re: Lobular cancer invasive

Hi Lady Julie, I do hope you had some good results yesterday. Yes as guessed my spoiling involves lots of chocolates and retail therapy!
Deb, in a way the op was better than I thought - probably because I was expecting the worst! What I meant by no node involvement was that they did SNB but did not do ANC. I am under the impression (I think that is what my doctor told me but I am not too sure now) that if they found some lymph nodes affected they would have performed ANC there and then so the fact they did not do ANC means that my lymph nodes were clear? Or is it possible that I could still find out in my pathology report that my lymph nodes are indeed affected and I would need ANC?

I would like to ask you ladies since you all are ahead of me how long this soreness is expected to last and till when you are taking/took painkillers. Deb, you said you needed to take painkillers to take off your jumper the other day - how long has it been since your op - 2 weeks? After one week I am still sore though admittedly it is not unbearable without painkillers - it is just that I can do more movement easily without feeling much pain if I took painkillers. I am going to run out of painkillers the hospital has given me soon - what are you ladies taking, paracetamols or...?!

[color=#333333]Jane, sounds like you had a lovely Sunday with your family - I am glad as you must have been pretty upset about your seroma. It is good to hear that you experienced no side effects of radiotherapy - I really hope I can go straight to radiotherapy, too.
[color=#333333]
[color=#333333]Hope you are all having a good week. xx
janemod
Member

Re: Lobular cancer invasive

Hi Deb, Sounds like you have had a brilliant day but it is so cold.. We had a lovely day too, we went over to my sons, my husband is a decorator, so he and my son hung some wallpaper on a feature wall in both the children's bedroom, their rooms are going to be amazing, love doing stuff like this. While they did that, I went shopping with my daughter in law and little Matilda. We had a lovely morning, then back for roast dinner, superb day.
How are you getting on at home? will you be back at work soon or are you not sure, I would say to any one else, take as much time off as you can, I went back because I felt I needed to get back into the swing of things, but went back with a rotten cold, which really dragged me down, but I am on top of it now. My boob is throbbing as I write this message, but I have 2 really strong prescription drugs to help me, It's good going to the hospital now every day, because I can see any one there if I need too. You made me laugh, although its not funny, about pain killers so you can take your jumper off, you do get into little rituals so we can make our lives a little bit easier. I have mine.
I did go Friday for treatment, it is so funny, I have to wear this flower print gown, it is hideous, I was not impressed, it snaps down the front, which I have to undo when I am on the rad machine, then to add insult to injury, this young male nurse tapes down my good boob to my arm so the rads did not go through that boob, honestly I can't believe the people who have pulled, prodded and poke my boobs since Christmas, but any way so far I have not felt any side affects, but it is still early days. Well hope you have a good week, chat again, take care Deb XXXXX
Debcully
Member

Re: Lobular cancer invasive

Hello everyone 🙂
hope you're all having a lovely lazy sunday.
bet you are so relieved that op is behind you now tweetypie. Is it better or worse than you imagined? Did u have a guidewire put in first? And when u say no node involvement do you mean they didnt remove any?
Had to look up what seroma was jane as id not heard of it before....hope its not too painful 😞 and let us know how rads is going...you're the 'pioneer' of the group and i for one look to you to see how things are going/if its painful etc...how did you cope with the journey? And did your friday treatment go ahead? Thats a bit crap isnt it that you had got yourself all ready to start on the wed and then it was delayed...suppose at least they rang you to tell you and saved you a 2 and a half hour journey.
fingers and toes crossed for you for your results tomorrow lady julie...when i went back it was like a reunion. Another 2 ladies who were on same ward and had ops on same day etc were also there...its wierd we were like long lost friends. two of us were clear and go straight to rads and the other lady doesnt even need that. Apparently her lump wasnt even cancerous but because it was 50/50 they didnt want to risk it.
just got back from a lovely big dog walk in the countryside with 'mad bruce' and am just waiting for painkillers to kick in so i can take my jumper back off lol. I still get a shooting pain when getting dressed. More in the back of my armpit and it just feels like it has split open and something boiling hot has been poured inside. It really really hurts. Its still early days tho and im really really enjoying not having to go to work lol.
not sure when rads will start. Am back again this week to see oncologist to chat about it.
and when does this numb feeling go lol its awful lol
take care all
deb xxx
janemod
Member

Re: Lobular cancer invasive

Hi Ladies, staying in this Saturday with a tasty Chinese, and just reading all the recent post. What a time we have all had. You are right Julie, there is so much going on, we all have similar stories, but also different. Hope you are still recovering from your surgery, and I will be thinking of you this coming Monday, really wishing you the best of luck with your results. My daughter tried to get us to buy a puppy schnauzer today, we didn't as I work full time and feel that it would be so unfair to have one, but the picture was adorable, can't get him out of my mind, she has one who is now 10 months. Watch this space, maybe there will be the sounds of puppy paws soon. Take care XXXXX
Hi Deb, really proud of you, it has been so hard for you, but you have done so well, a true hero. Check how much post you have created, truly amazing, but this chit chat does make us all feel, so much better. Will you be going back to work soon or are you going to see how it goes. I was ready to go back after a month, I did need all the time I had, emotionally and the physically side but once I went back, the support I got from the girls and my bosses was so lovely, it really picked me up. Fantastic news again about your results, do you know when rads start for you? Take care XXXXX
Hi Tweetypie, Hope you are feeling OK, that numb feeling under your arm is a strange feeling, it does take some getting use too. I am so glad that is all behind me, I remember when I tried to shave it, OMG it felt like it was someone Else's armpit, wierd. Thank you for your kind messge about my Soroma, I always knew something was not quite right, but every thing else has gone so well, I won't complain, well not too much 🙂 it could have been so much worse. Keep resting and spoil yourself. Take care XXXXX
LadyJulie
Member

Re: Lobular cancer invasive

Gosh there's so much going on with us all isn't there!
Tweetypie - I'm pleased you're home now and love the fact that you are going to spoil yourself! Good for you. Hope it involves lots of chocolate (wine gums in my case - I'm addicted), wine and retail therapy.
Jane, sounds like you're having a rough time at the moment - it all seems so unfair and undeserved. Sharing how you felt during your first rads session had a real impact, I feel as though I'm going through it with you. It's good being able to share experience and emotions on here, despite the fact we'd all rather be discussing other, lighthearted topics no doubt.
Deb, hope your appointment to have your dressings removed went ok.
Love to all, have a great weekend.

Julie xx
Tweetypie
Member

Re: Lobular cancer invasive

Hello ladies, thank you very much for your lovely wishes. I have just been discharged from the hospital - the surgery went well. I had a lumpectomy and there was no node involvement so I got off relatively lightly so far. I will have an excruciating 3-week wait till my pathology result come out, but I am determined to spoil myself in those 3 weeks! And you were all right, it feels so much better having had the tumour out, even though it is still sore post-surgery!


Deb, that is such great news that your results were all clear! So happy for you. Hope you had a good evening celebrating.


Lady Julie, I do hope you get the same good news on Monday.


Jane, I am sorry to hear that you have developed Seroma but it is good to know that you are now moving on with radiotherapy.
xx
janemod
Member

Re: Lobular cancer invasive

Hi Girls, Well I have now been for my first radiotherapy treatment, every thing went well, I got a little upset laying in the machine just thinking why I was actually there, but pulled myself out of the negative feeling. It is quite an odd experience but certainly not painful at this stage or uncomfortable. My trusted husband was with me just out side in the corridor, bless him, he has been with me on every appointment. I did feel a little humble when I found myself sitting with a lovely, much older woman, she was 83 years old with breast cancer, it did make you think, poor lady, you would think at that age she cold be saved from this. For me unfortunately I do have a problem with my breast, I have developed Seroma, it is pants, really jarred, I always knew something was not quite right, but when the breast nurse kept saying early days, you just wait, apparently it will not get better in a hurry. Well going for a warm soak in the bath, I am back to smelly armpits as I am not allowed deodorant on that side, spicy all over again.
Take care girlies, love from janemod
janemod
Member

Re: Lobular cancer invasive

Hi Deb, that is absolutely amazing news, so so pleased for you, you have been through such an awful time, thank god it is nearly over. It is a lovely feeling when you are in the clear, you will have the best sleep tonight ever. I didn't get to have my treatment today, the hospital called and said the radiotherapy machine had broken down, so after all that, I start tomorrow. Sleep well Deb zzzzzzzzzzzzzzzzzzzzzzzzzzzzz
LadyJulie
Member

Re: Lobular cancer invasive

OMG How fantastic is that!! You must be so relieved. You've had a terrific service from your hospital to get your results as quickly as that.
I'm really happy for you Deb and hoping I get the same news on Monday.
Love Julie xx
Debcully
Member

Re: Lobular cancer invasive

Good news
had a call from the BN tonight re my appointment tomorrow...shes told me my results are all clear so its straight to rads for me.....yey 🙂 so tomorrow is just dressings off and making arrangements for radiotherapy....how good is that 🙂
having a drink now to celebrate
deb xxx
LadyJulie
Member

Re: Lobular cancer invasive

Hi there,
Just wanting to wish you well for tomorrow Deb, a big day for you, dressings off and results.
Also to you Tweetiepie, hopefully you will have had your surgery now and be on the road to recovery.
And best wishes to you too Jane, your first Rads treatment today.
What a week! I'm thinking of you all and can't wait to hear your news. Fingers crossed it's all good ..............
Love Julie xxx
Debcully
Member

Re: Lobular cancer invasive

Hi jane
glad to see you back 🙂
hope everything goes well for you tomorrow. Dont envy your 2 1/2 hour round trip. Hope youve got somebody to keep you company.
Im getting results tomorrow too 🙂
Take care
deb x
Debcully
Member

Re: Lobular cancer invasive

Tweetypie
just to say hope everything goes well for you tomorrow 🙂
deb xxx
janemod
Member

Re: Lobular cancer invasive

Hi Tweetypie, I hope you are not to anxious leading up to your surgery. I know you would have read the post, and know how scared we all were before, and how relieved we were afterwards. I hold my breathe for you, tough time mentally to go through ahead, So glad that is all behind me now. Just try and organize that last bit of time you have, so you don't stress to much. My surgery was on a Tuesday too, that is the day at the hospital where I attended that they did the ops, result day was always Wednesday, you stated to get use to the system quite quickly. Tweetypie take care and before you know it you will be in our shoes. Lots of love Janemod X
janemod
Member

Re: Lobular cancer invasive

Hi Deb, Sorry I have not been here for a few days, my router died on me, so I have been waiting for a new one, and at last it came, yeahhhhh. How are you getting on Deb, from your post it sounds really good, so pleased for you. Its been 8 weeks on Tuesday since my surgery and this weekend I actually felt my old self again, smiles are back, hopefully sense of humour and I have started to feel my old self. Last week was the first time at work that I didn't feel so tied, half way through the day. On Tuesday when I went to the hospital, I saw the two surgeons who operated on me, I have got a little problem, first they thought it was fluid so they tried to aspirated it, but nothing so then they realised it was just swollen. In my operation they moved some tissue around so I didn't dip on the top of my boob, then where they took it from, they had to maneuver it across but unfortunately it did not connect up with the blood supply and just died off, leaving me with a big crease, apparently it can be put right in a year if I want them too, I just need to get this treatment behind me. Bit of a shame but can't do any thing about it for time being. Also the pain, I been told is still post surgery and will go soon. So Radiotherapy starts this Wednesday, the next chapter is starting. So glad I am back chatting to you guys. Lots of love Jane XXXXX
Debcully
Member

Re: Lobular cancer invasive

Yes this thursday well as far as im aware im getting results anyway!!!
he is very handsome...is he a daftie? My oh has got a boxercross and he is one stupid giddy mutt With an overshot jaw lol
hi tweety pie....i wouldn't go as far as saying im happy with the look and havent got the dressings off so havent seen it properly yet but definately the shape and size of it is better than i had imagined so that is a plus.....just hope they got clear margins so i dont need it doing again.
hope you're having a lovely weekend both of you and i will be thinking of you on tues tweety 😞
take care
deb xxx
Tweetypie
Member

Re: Lobular cancer invasive

Hi Deb, glad you are feeling a lot better post-surgery and both you and Lady Julie are happy the way your boobs look & feel - very reassuring as I am worried how mine will look after the surgery! Hope you both get good results in the coming weeks. xx
LadyJulie
Member

Re: Lobular cancer invasive

Hi Deb
Wow results Thursday! Do you mean this week? That's good for you to not have to wait so long. I'll be thinking about you.
Yes the photo is of my handsome boxer dog (actually it's me before my surgery lol).

Here's to a positive pain-free week for all of us ...............

Julie xx
Debcully
Member

Re: Lobular cancer invasive

Lady julie
blimey thought you would have got your results last monday!
and thats good news that your boob looks the same. Mine wont as i lost my nipple due to the location of the lump but the shape of it is much better than i expected as is the size 🙂
i'm back next thursday for my results
still sore but can handle that when i dont have to do anything.
been meaning to say that i love the photo 🙂 is that your dog?
take care
debbie xx
LadyJulie
Member

Re: Lobular cancer invasive

Hi Deb,
Pleased to hear you're in good spirits. I hope all that rest, pampering and daytime TV is helping to ease your soreness.
I had my dressings off as planned on Monday and it went ok, thank you. The scars are neat and healing well but I have to say I was surprised how long they both are! I'm a bit sqeamish about touching the breast one as it feels very hard underneath, scar tissue I guess. I'm not sure whether it's permanent. Apart from a bit of swelling still, my boob looks just like it did pre-op. My lump was very deep near the chest wall so that will explain it. You must be nearly due to have your dressings removed too ??
I finally got my pathology results appointment letter in the post today. Monday 25 March - 26 days after surgery. Surely that must be a record!
Take care
Love Julie x
Debcully
Member

Re: Lobular cancer invasive

Lady julie
how did it go on Monday?
deb xxx