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Hi I have Lobular Invasive BC

19 REPLIES 19
Jobey68
Member

Re: Hi I have Lobular Invasive BC

Hi Angel, I hope you are doing well after your op, things hopefully will be a bit easier for you now you have this part over with, the second half of this year is so much more enjoyable than the first part for me! My son is getting married in 12 days and I'm sooooo excited 😁😁 sending you lots of love and best wishes xxx Jo 

Dacula
Member

Re: Hi I have Lobular Invasive BC

Hi Amanda and all fellow lobulars!

Sorry to hear about all your diagnoses 😞
I was also diagnosed with grade 3 invasive lobular cancer (ER ve+) at the end of June. Left Mx and full node clearance on 2nd July. 1 tumour 6.5 cm, 3/10 nodes affected. Went on holiday last week of July to mid-August. Surgery for me went well - no issues so far post surgery - scar healed okay and drains removed quickly.
Started chemo today (EC) - 5 more to go! Rads after Christmas planned and tamoxifen.
Nipple strangeness for me too, rather than lump prompted me to go to my GP. Hospital for scans, biopsies a few days later. Then a week for results then surgery about a week later. Chemo would have started earlier if I had not wanted to go on my holiday (Greek island hopping) in between! GP and surgeon okayed this.

Free parking at hospital for me too - nurses give me a card to get through the barriers after every visit - I would hope this was 'standard' across the country.
Yup diagnosis absolute shock and still trying to get my head around it all. Waiting does suck but you know NHS have been brilliant so far in all of this crap!
Phew long reply but had an urge to say hello to fellow lobulars! Good luck with all your treatments...
dac

Angel20
Member

Re: Hi I have Lobular Invasive BC

My bcc nurse gave me a form to take to parking office where ever I park in the hospital I put a card in the windscreen x
Clementine
Member

Re: Hi I have Lobular Invasive BC

Ooh Angel

hiw do you get free parking at the hospital?

Clementina

Clementine
Member

Re: Hi I have Lobular Invasive BC

Hi Amanda 

noticed my nipple was a bit inverted in March, didn't think anything if it as they used to be inverted before breastfeeding.

breast started to ache, in June, again not too worried as had ducts syringes before and cysts removed. Always been told that if it hurts it is a good sign.

routine mammogram last year clear.

saw advert on TV about being clear on cancer..saw doctor two days later. Hospital mammogram, scan and biopsy two weeks later. Due for lumpectomy in a couple of weeks. Yes lobular invasive. They reckon it had all happened in a matter of weeks.

head spinning. Part of me wants no one to know and part of me wants to scream . I feel for you as a single parent. I do hope you have some support.  Luckily I have a hubby, who is killing me with kindness. Think he would come to the toilet with me if he could. Luckily my child is now grown up, but it was the worst thing telling them. 

clementine

Angel20
Member

Re: Hi I have Lobular Invasive BC

Wow Jo you have gone through the mill. Glad things are starting to go well. Enjoy that's sunshine as we are not getting much of it here . Angela x
Jobey68
Member

Re: Hi I have Lobular Invasive BC

Hi Angel, I can totally empathise with your feelings, I'm 47 and started this year full of hopes and excitement as our eldest son was getting married, niece was expecting her first baby and like you I work 4 days a week and have a lovely life then in Feb it all started going wrong ! I found a lump and my nieces baby was confirmed to have Down's syndrome and heart problems, I was diagnosed with BC in March and held my nieces hand while she's gave birth to her dead baby boy in April just a week after having my lumpectomy, life couldn't have gotten any worse but 4 months on we are all coming out the other side, niece is coping well and my treatment is over, and sons getting married in 4 weeks then we are off to the Canaries for a lovely holiday!! Things do get better, I know how rubbish you will be feeling right now believe me but you do cope and life will be good again, lots of love Jo xx 

Angel20
Member

Re: Hi I have Lobular Invasive BC

Hi Janet ,

i do have a great family around so kind and considerate but when they say just get rid of that boob and get rid of the cancer it's not so easy. I turned 50 2 months ago dropped a day at work to 4 days nothing to worry about just my holidays which I love. Now it all seems to be falling apart after all the years that we worked to be able to do what we want at this time in our lives. 

My daughters due to give birth to her first baby in 5 weeks time I hope I'm ok to support her ,at least I get free parking at the hospital now ! 

Hope all goes well for you tomorrow x

Angel20

Triumpet
Member

Re: Hi I have Lobular Invasive BC

Hello Amanda, I to have just been diagnosed with lobular BC, an  MRI showed the full extent of tumour as mammogram hardly showed anything..due to it being summer holidays I will not be having my mastectomy until 21 August.  But in the big scheme of things that's only one month between diagnosis & op, so things moving pretty quickly. Still waiting for emotions to catch up with me, I'm more annoyed about cancelling my holidays!! 

Good luck with your op, here's to a speedy recovery

Susie xx

Janet67
Member

Re: Hi I have Lobular Invasive BC

Hi Angel20,

           After reading my post I felt I needed to update that I am really not as confident about my upcoming surgery as it sounded. I am also struggling to come to terms with it this time and find I am waking up at 3am and having to cry. I can't stop thinking about the finality of the op and it terrifies me. I just wanted to let you know that you are not alone in how you feel and all we can do is take one step at a time and then another and hopefully we move forwards into a better time for all of us. Stay strong

janet X

Weeannie1
Member

Re: Hi I have Lobular Invasive BC

Hi Amanda,

 

i was was diagnosed with Grade 2 invasive lobular cancer back in November 2013. I underwent two WLE (the second to clarify clear margins), 6 rounds of chemo (fec75) and 15 rads sessions with 3 boosters tagged on at the end. I had been having yearly mammograms since the age of 35 due to a family history of BC and was finally diagnosed at age 50. What annoys me is that I'd been back and forth to the breast clinic complaining about the thickening in my breast, but they kept saying my scans were coming back clear and I had nothing to worry about. I had wanted a double mastectomy on diagnosis, but they managed to convince me to undergo WLE instead. I bitterly regret that decision and am now on the waiting list for an elective mastectomy with immediate reconstruction.

 

I was relatively lucky going through treatment, keeping fairly well and managing to work while having chemo. I must stress that I only work part time, and I don't think I could've done my job full time during treatment. But although unpleasant it was doable. If you have to go through chemo and want to ask any questions, please feel free to PM me. I hope you don't have to go down that road, but you'll find plenty of support  from the ladies on this site if you need a lift.

 

I wish you every success, whatever treatment you require. Take care, Ann x x 

Angel20
Member

Re: Hi I have Lobular Invasive BC

Thanks Janet x
janet48_
Member

Re: Hi I have Lobular Invasive BC

Hi Amanda,

I totally agree about there needing to be more information about the different types of breast cancer. Last October I was sent for a mammogram and ultrasound at my hospital as I noticed my breast felt thicker and denser but was told it was nothing to worry about. Then this June I had my first routine mammogram and was told it looked fine (the results came back saying the same thing, everything was clear). 12 days later I found a lump and after a biopsy it was confirmed to be lobular cancer, grade 2, 36mm, I was stunned. The doctor admitted that this type of cancer doesn't always show up on a mammogram. 

So I went in on 13th June for a WLE and SNB and yesterday was told that fortunately the lymph nodes were clear but not the margins and so now I have to go back In next week for a mastectomy. After I am through the other side and finished with treatment, I will be insisting on an MRI instead of a mammogram as that seems the only definitive way to check this type of cancer.

Hope this helps, to know your not alone, keep strong and stay positive, we'll get through this as it sounds like we will be in at roughly the same time.

 

Janet X

janet48_
Member

Re: Hi I have Lobular Invasive BC

Hi Angel20, I hope you getting strength from this forum, it's astounding how common breast cancer is as up to being diagnosed myself I hadn't know anybody who'd ever had it! I'm so sorry you are having to wait so long, that I found has been the hardest thing to deal with, the waiting. I am in again on the 4th for a mastectomy and hopefully that will be the end of surgery but it is a new, scary and often lonely path we are taking but we are all here routing for you stay strong x

janet48_
Member

Re: Hi I have Lobular Invasive BC

Hi Amanda, I am so sorry to hear of your diagnosis and the time it took to get answers! I was also diagnosed with lobular cancer in June and mine was also not picked up on a mammogram. I noticed a sizeable lump 12 days after my mammogram which subsequently came back clear!!! I have since been told that lobular cancer does not always show up on mammograms which is not very reassuring. Anyway I had a widelocal excision and sentinel node biopsy on 13th June and went back yesterday expecting to be given the all clear, only to be told the margins were not clear and I now have to go back on 4th August for a mastectomy!! Not the news I wanted but just to let you know we are all in this together and hope you draw some comfort and positivity from all the other women on here. Good luck with your op and stay strong X

Lucy_BCC
Member

Re: Hi I have Lobular Invasive BC

Hi Angel and welcome here

 

Please feel free to access any of the information we have directed Amanda to below, I hope you find the forums a good place to find support during this difficult time

 

Heres a link to the BCC information about invasive lobular breast cancer which I hope you will find helpful:

 

https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/diagnosed-breast-cancer...

 

 

Take care

Lucy BCC

Angel20
Member

Re: Hi I have Lobular Invasive BC

Hi Amanda,

im glad I saw your post today as have been wanting to sign up but have just been reading. I also was diagnosed on 25th June with invasive lobuler cancer and have 3 tumours in my right breast. I was told that I had to have a mastectomy and I'm devastated . I'm having to wait so long now for the operation it's not until 12 th August .

Sam_BCC
Member

Re: Hi I have Lobular Invasive BC

Hi Amanda01

 

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 can be difficult when coming to terms with things and getting to grips with your treatment plans, etc.

 

As well as the support you are receiving on the forums 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:-

 

https://www.breastcancercare.org.uk/information-support/publication/primary-breast-cancer-resource-p...

 

 

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

familytree
Member

Re: Hi I have Lobular Invasive BC

Hi Amanda x 

I am sorry for your diagnosis, it's a terrible shock isn't it. There are loads of woman (and men ) who have been through what you are going through and if you look at all the threads I am sure you will find similar stories you can connect with.

It is scary that mammograms don't pick up all cancers. Thankfully it worked for me and many others. I'ts a rollercoaster from this point but you are being treated so on the road to recovery.. that has to bring some comfort.  

Sending love 

Lorna x

Amanda01
Member

Hi I have Lobular Invasive BC

Diagnosed 2 weeks ago and having mastectomy next week, my head is spinning with everything going on?  Being a single mum without much self confidence, I had augmentation for self confidence, had an issue with breast in February, was given the all clear by clinic in March after mammogram and ultrasound, told it was capsular contraction, had implants removed in June, had a few follow up appointments with consultant and voiced my concerns as still assemetric and gut feeling that something wasn't right, consultant then decided to take a few biopsies which confirmed Lobular, facing mastectomy next week then possible chemo and radio, is there anybody else that has been through similar, feel that there is not enough education out there telling people that not all breast cancers can be picked up on mammograms