Hi ladies, also tucked up at home after sentinel nodes and mastectomy on friday. Its much better once you start moving forward. Once im healed I'll see the oncologist for the chemo plan.
Pathology due 22nd.
They walked me along the hall to theatre, felt like the green mile!
Not so bad though, home with drains for a couple of weeks, but pain is minimal.
Thinking of you all
Had the letter for post op checks tomorrow and Lymph nodes removed for testing on Tuesday.
Feel much better and more relaxed after a weekend away so am up for whatever now.
Mastectomy is after I have healed from lymph nodes
Does any one know how long that can be?
Just hope they are clear!
Hi Alison. So glad you are home and sound like you are doing well, Keep it up, x
I had my first FEC chemo on Wed 10th and it all went fine including the cold cap. As yet have had no side effects whatsoever so am just wondering when thay are going to start. It is like waiting for a bomb to go off. I know they can begin later but will keep on taking the anti sickness tabs and hope for the best.
Can't wait for surgery to come round to get this thing out of me.
Hugs to all xx
Good oh Alison - home already - great.
Now just take care, no set backs allowed.
The back of the letter today had a thing that I have to take in proof that I am resident UK citizen - as OH how come then I have an NHS number!
Any way off up norf tomorrow to visit 2 year old grand daughter - and her mummy and daddy.Her mum isn't to well, a baby in January.
My one hope is that in between this, that and the other I will be able to visit the new baby.
Finally have had a date - not for the big op - but for the Lymph nodes to be excised and tested.
So it's Monday morning for the post op tests, Monday Afternoon for the dye, and Tuesday afternoon for the op.
Was very emotional when I opened the letter, dread to think what I will be like when i have the date for the mastectomy. I thought I was doing well and coping as well
Jets my Lobular ancer was diagnosed in November as well, It seems nearly every week there is another test/appointment but also I move a further step towards a solution with every appointment and test.
In fact we are finding our way around the hospitals of the local NHS trust now. Don't need sat nav to get to them any more!!
Hi Jets. Sorry you have had to join but you will find lots of help here. I too have lobular cancer diagnosed in Nov. The MRI is nothing at all to worry about. You lie face down with a gown on and your boobs drop through 2 holes in the table. A dye is injected into your arm and they slide you into the machine wearing earplugs as quite noisy. IT takes 20 mins and is fine. Then comes another long wait of about 5 days for the result. That is the worst bit as you have already found out. Once you have a plan in place honestly you will feel much better.
Feel free to ask anything you like. Love and hugs Dee x
Thanks for that. I hope all went well today.
was disappointed not to have a letter today so am ging to ring the BCnurse tomorrow to see what is going on.
It is this waiting that i really getting me down.
Had a bit of counselling today and the charity(Haven) offer 10 sessions - I have opted to have some counselling, some massage and some reflexology. Can choose as and when I have them.
Feel I now have somewhere to turn.
Cazz I spent the first couple of weeks crying but as the treatment plans etc have gone into place feel much better about it - just the waiting gets to me
Hope all goes well for you - have found help and strength from this forum, BUT only look at the bits that dirctly affect you
Thanks Linda and Sandie
I have decided to have the lymph nodes removed and tested first now and will base my decision on that.
It does put off the surgery for a bit (Christmas gets in the way!) but I have already begun hormone therapy.
Linda I found what you said very useful, I have found I am bombarded with info _ I suspect most are.
I dread waking up witout a boob so still think I will have the implant immediately, but would rather come out the other end with a clearer idea of the results.
Also I am finding people I talk to know some one who has had it but no one who actually has been through the process.
Once again thaks
Yikes matti, tough call, Im having my left breast removed on friday. My surgeon said he wanted me to wait until the treatments are all finished for a reconstruction. His reasoning was reconstruction is a much bigger surgery and thus a longer healing time. He also said the reconstruction can be very delicate and the radiation, is no good for it.
But as I havent been through any of it yet I can only go with what I've been told.
Im looking at chemo as well, so I figure Im just going to get on with it.
Hard choice, there are probably a few ladies on the surgical boards will know better.
What ever you choose will be right for you xxxx
Edit : and see a lady with actual experience posted at the same time. Thank you xxx 🙂
Hi - new member
Tried to get on forum at weekend as need a bit of input, internet wouldn't let me
I was diagnosed with lobuler cancer beginning of November. Found mine trying on a new swimming costume and found something wrong. It is the waiting - have this test - a week - have some results - a week.
Any way am already taking hormones Anastrozole(arimidex)
First they said nothing there - biopsy showed it was. Then MRI to find the size - very small 18mm - but a 'shadow' elsewhere on same breast. Another biopsy, results last Friday was positive again so have to have to have mastectomy. Probably not need chemo, probably not need radiotherapy - all depends on lymph glands.
That is where i need the input
I could have straight mastectomy, I could have immediate reconstruction but if lymph nodes show cancer will need radiotherapy that can effect scar tissue and the implant, could have lymph nodes removed and tested first.
Never have been good at making decisions
Consultant says he's willing to do reconstruction at same time if I want.
Because of Christmas holidays needed to know for sure today what I decide.
Just a quick thanks for the very immediate support - Ive got my MRI date for next Thursday - like people say - its the constant waitig that has been so very stressful. I managed to tell my lovely daughters & son and they have been fantastic.- I am kind of numb and slightly in denial at the moment.
however, i do have a bit of a question on waiting times - I have to have the cancer operated on anyway - but they will be deciding whether this is a masectomy after Thursday - once the MRI results are known and the care planned for - does anyone know if there are any guidelines on when the operation should take place? I want the operation as soon as possible because I do know that time is of the essence here. I just dont know whether it is likely to take place before Christmas or not....
My very best wishes to all of us that are going through this right now.
Hi Linda and everyone.
Struggling a bit at the moment.
I was Dxed with lobular at the beginning of November.... I had the surgery wle and node clearance with 3/15+. Am due to meet oncologist for first time this week.
I am very worried that the bc will come back in either breast. When I was called back following my first mammogram the radiologist said that he was really pleased his team had caught it because it was so tiny. It wouldn't have been picked up at all twelve months earlier and really I should consider myself lucky that it had been spotted this time.
Turned out at surgery it was 2 cm at its widest part ( globular don't grow round like others) and was already in my lymph nodes. No- one was quite so quick to tell me how lucky I was.
Is it true that globular are more likely to come back? This, coupled with the fact they are so hard to spot, really makes me more determined to go for bilateral mx. Especially as my right breast would have no lymph nodes too filter any new cancer cells from leaking through.
I honestly feel I will never trust my breasts again.
Also, is it true that chemo is less likely to succeed with globular? Does that follow with any tiny bits that are floating about having got through the lymph? Are they globular breast cancer cells or just cancer cells?
I am really struggling with the idea of chemo, unless my scans show evidence of spread beyond the lymphs. It just seems counter-intuitive to me.
All input very very welcome.
Love from Jane xx
I was diagnosed with Invasive Lobular Cancer on November 5th so not too long before you had your own diagnosis. I had an MRI too before I got my treatment plan and I found it was the waiting that was the hardest thing to deal with, then everything seems to move quite quickly. You're dealing with so much at the moment, I think you're very brave and you're certainly not alone.
Sending a big hug, love L x
Firstly, welcome to the forums, I am sure you will find it a great source of information and support. I'm sorry to read of your diagnosis, the first few days and weeks are always difficult when coming to terms with things and getting to grips with your treatment plans, etc.
As well as the support you will receive here you might find it helpful to order the BCC resources pack. It has been specifically designed for those newly diagnosed and contains information to help you better understand your diagnosis, test results and the various treatments available. If you would like to order a copy just follow the link bellow:-
Also, do give the helpline a ring if you need any further support or information. They're on 0808 800 6000. Open 9-5 Monday to Friday and 10-2 Saturday.
Best wishes Sam, BCC Facilitator
I have to keep reading your posts on this amazing site just to get the strength to cope with this lobular nightmare. Alison, I hope your results today went ok and thank you for your welcome to the club. I know so little as yet about my own cancer. Just the diagnosis on 12th November and breasts MRI with contrast on 25th, but I get that result on 3rd December. The more I read you all the more I learn about the detail of this horrendous thing. I had cysts in both breasts for years and thought this odd lumpy bit was just because the breasts were dropping! Then at the start of November it felt like a tomato although I couldn't make out the exact definition of it. So I'm still in shock and felt terrible over the weekend, when all the helplines seem to be closed. But you wonderful ladies are there, even at 4 am, and I don't feel so alone now. Thank you all so much for your posts and Deedee, you are in my thoughts. Love and hugs xxx
Great news Alison. So pleased for you. I am still waiting for the actual date of my first chemo session but have been out trying on wigs in readiness . They looked better than my normal hair !!
Hope all goes well on the 10th. I will be thinking of you.love and hugs Deex
My cancer is too big 6cm to do surgery first so starting chemo this week too shrink it then mastectomy with recon after that. Had to go that way as surgeon feared some might still be left behind if he did mastectomy on Dec 4th as planned and then i would have needed more surgery. I am disappointed as wanted it out of my body as soon as posible.
Trying to keep positive. Hope all going well for you,
love and hugs Dee
Hi Dee, I have a couple of friends having chemo before mastectomy - the theory seems to be that they can monitor whether the chemo is working by checking whether the tumour shrinks. I had my mastectomy first (no other option given) so now they have no way of knowing whether my chemo is actually killing any remaining cancer or not. On the other hand....my tumour is already gone and the surgery is behind me which is a relief. My limited google search suggested both ways have simular prognoses so I guess it doesn't matter too mcuh which way you go. Good luck.
Hi Flower. I'm newly diagnosed, ILC, waiting for result of MRI done on 25th. I'm grateful for your post because everyone tells me how good outcomes are these days. I know otherwise and I feel bitter for you and your dear son. My little sister died of colon cancer at 38, leaving a 1yr old son and 3yr old daughter. Your story is shocking and I hear your anger. Someone has **bleep**ed up along the way, it seems to me. I hope you are getting
the very best of medical treatment as I still believe your luck could change. Please allow me to pray for you x
it is rubbish. i am much further down the line. dont know why i looked at this section tonight. i was diagnosed in jan2012 with ilc age 37 with a boy of 2. half of one node positive. grade 2. 3.1cm. 7/8 er positive. all scan - ct, bone , ultrasound clear. great prognosis. i am now incurable with it in my leg, pelvis and spine. found out in april this year. i had chemo. mastectomy. tamoxifen and rads- the now 55 works. i think i am the unluckiest person. my boy is 5 and all i want from life is to see him to secondary school but i know i wont. enjoy life ladies. cancer is awful . unpredictable and relentless. x
Hi Dee, just running out the door so will be brief but it may be to do with the location of the tumour and to ensure he gets clear margins. Hope this helps CC x
Hi.just an update on my journey.Macmillan nurse came out today with results of my MRI which I had on Sat. Only one breast has cancer but the mass is much bigger than was thought so have to have a mastectomy instead of lumpectomy I was expecting.She also said consultant wants to talk to me tomorrow about having chemotherapy before surgery.I will go and talk to him but hope to still have my surgery on December 4th as originally planned. If the only reason for chemo first is to shrink the tumour and then have a lumpectomy I will say no thank you just take it all away now please. Can t think of any other reason he might want to do the chemotherapy first.Any suggestions would be appreciated.love and hugs Dee x
Hi Alison, did you have a full body into scan or just breasts.I had mine on Saturday and get results on Thursday. I had assumed it would be a full body to check if it had spread but was only on breasts. Wish it was time to find out if having just the lumpectomy or mastectomy. Macmillan nurse is coming out to me on Thursday with results. Hope you are ok.love and hugs to all on this journey.Dee xxx
Hi Alison. Pleased mri went according to plan. Were you planning a mastectomy or is it the size of the lump which is dictating this? It is planned for me to just have a lumpectomy,radiotherapy and hormone tablets for 5 years.
I hope you don t mind me asking. I have been told mine is only 1 cm but most mri results seem to come back larger than expected on reading most posts on lobular cancer. It does seem to be a bit of an unknown little blighter !!!
Keep on keeping positive
Love and hugs Dee