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newly diagnosed with invasive lobular bc
Hi i'm 43 yrs old had my biopsy of a 5cm lump in my left breast when I went I knew it had to be nasty had to go back for my results 2 days after. I was told I had invasive lobular bc but not sure if in lymph node when they did biopsy it was borderline so have to have that done again. been booked in for an MRI as its common to have it in the other breast too but they say you can't have MRI if your not 6 - 16 days into your cycle for your period mine is due on the day my MRI is so I don't really want to wait for another month, I have been preliminary been booked in to have mastectomy on 21st feb.
Would appreciate any advise
Tash x
Hi Tash
So sorry that you've had to find yourself here, but it is a really good place for support and advice.
Easier said than done, but try not to worry too much about a delay of even a few weeks.
I was in your position just over a year ago I found my lump at the end of Nov 2010 and got diagnosed with invasive lobular bc on the 22nd Dec. Because of Christmas and shifting areas to have my surgery (long story!) I didn't have my MRI until the 17th Jan and my mx and recon on the 27th Jan. My tumour was 5.5cm & multi-focal!
My consultant said that time between my dx and the start of treatment would make no difference to my long-term prognosis (which is pretty good). My cancer was stongly ER+, so he did put me on Tamoxifen while I was waiting for my MRI and mx.
Lobular cancer is rarer than some of the others - only about 10-15% of bc are lob, and they are often quite big when they are discovered. A US on my lymph glands showed some enlargement and I think we were all pleasantly surprised when the results of a total clearance (15 nodes) showed them all to be clear.
Because of the size and grade, I did go on to have the 'full monty' of chemo and rads, but I've just had my first one year check and all is OK, and I've been back at work full time since November.
This bit - waiting for it all to kick-off and not knowing exactly what's in store - is the pits. It does get easier once you know exactly what you are facing and have a treatment plan.
Take care, and good luck on your journey. If you have any questions, don't be afraid to ask - as is often repeated on here, there is no such thing as a silly question!
Sending hugs!
Dx
Hi Tash,
Welcome to the Breast Cancer Care Discussion Forums. Here is a link to the BCC publication Invasive lobular breast cancer, just in case you haven't seen it:
http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/invasive-lobular-breast-cancer-bcc45
Please do also give the BCC Helpline a call if it would help to talk to someone in confidence, Tel. 0808 800 6000 Mon-Fri 9am-5pm and Sat 9am-2pm.
With best wishes,
Anna, BCC Facilitator
thanx d
Got to go back tomorrow so i'll find out whats going to happen then, cheers for your info
Take care
Tash x
Hi tash,
I'm 49yrs and was diagnosed with invasive lobular BC in November last year. It is a terrible shock and for the first few weeks a terrible roller coaster.
I had WLE and x6 lymph nodes excised first, but because the margins were not clear I had to go on and have a MTX 3 weeks later. None of the surgery was as bad as I thought it would be.
I am now having chemotherapy , although I had no positive lymph nodes, invasive lobular can be blood spread too. The chemo is not my favourite way of spending 18 weeks, but again, it has not been as bad as I thought it would be.
I have used the forum a lot, there is a lot of support on here.
Take care.
Fiona
thanx fiona
x
Just had a core biopsy of lymph node as first 1 was border line when i had fna.
Just need to wait now for my MRI to see if its in the other 1,been booked in for mx on 21 st feb if can get MRI done before that.
Its all such a big shock not knowing whats really happening 2 u,what to do after u've had surgery to have reconstruction at the time or wait & have it done at later date. Going to see bcn on fri see if they can give me abit of advice
tash x
Hi Ruth
I'm interested to know what you mean by "invasive lobular can be blood spread too". I would have thought that any breast cancer can be blood spread if it gets into the blood system via the lymph nodes.
Jeannie
Hi Tash
I am 29 and was diagnosed with Grade 2 Invasive Lobular BC on the 10th January. I was told that although I initially only felt one lump, I actually have two and they aren't sure if they are separate or joined together.
I have so far had a CT scan, a bone scan and am about to have my MRI Scan to check my left breast although I have been told that there is nothing to indicate that it is in my left breast as well.
My Sentinel node biopsy has tested positive for cancer cells so I will be having them taken at the same time as my mastectomy. I have gone for the immediate reconstruction using the DIEP flap (tummy tissue). This I felt was the best option for me but if you are unsure see if your hospital holds any Breast Reconstruction Awareness meetings, I went to one last week and it was fantastic. You got all the information you needed plus you got to speak to woman at a show and tell session that had had the various different procedures.
I have been told that I will need Chemotherapy and possibly radiotherapy depending on how many more nodes test positive. I am also ER+ but not sure what treatment I need for that yet.
I just want to say that initially it is a shock and it is the worst news you want to hear but it has really helped me by staying positive about it all. The diagnosis is what it is and all you can do is get through each day as it comes.
I only just started using this forum at the weekend and I am really glad I did. The advice and support on here is amazing and you can talk to people first hand that know what you are going through.
Good luck with your treatment and please keep in touch.
Big Hugs
xxx
Hello Tash
Really glad that you've started this thread. I have been thinking about a lobular BC thread since I read a thread started by Hollygypsy in December http://share.breastcancercare.org.uk/forum/viewtopic.php?f=22&t=35144 ; she happened to have ILC and several people joined in to talk about how their experience has been different from the majority of people on these forums who have IDC.
My Dx was back in May on the first day of my son's A2 exams. I'm older than you and jumped at the chance to go on a trial of aromatase inhibitors +/- something else before surgery. I then had Mx and lymph node clearance in October and am now on chemo. I went to my GP after the sort of hardened area in my breast (didn't feel like a lump even to my GP) and lymph node started to hurt. I was initially told I had 2.6 cm tumour but like you FNA of lymph came back inconclusive. From there with further testing Dx got worse. They don't just use MRI to see if it's in the other breast but to more accurately assess the tumour. So it's really important that you have it done to guide the BS Mine was found to have the typical strands of cells spreading out from tumour and 2nd FNA on lymph node came back positive. After clearance 8/15 nodes were positive.
Lots of people have similar tales to tell about lobular. In tends to be bigger at Dx, lots of people have had a recent clear mammogram. I stupidly missed my routine mammogram 2 yrs earlier but the lovely staff assure me that it was unlikely to have shown up at that stage. Nobody is offered chemo to shrink the tumour before surgery as it's been shown to be ineffective for ILC. However there are several positives. The first is that it tends to be slower growing than IDC and lower stage and generally the outcome is better for ILC than IDC diagnosed at a similar stage. It also tends to be ER+.
It's horrible that you've had to join us here, but there are lots of people here who are facing similar experiences and can offer advice and support. My first piece of advice is not to worry too much about the Mx being delayed a few weeks. It's very very unlikely to make a difference to the success of the operation. You should get a chance to talk to a PS well beforehand (unless your BS also does plastics). I went for immediate reconstruction with a tissue expander as I need rads therefore felt full recon was unwise. Tissue expander gives me a shape but has been quite uncomfortable. It will be replaced eventually with a proper recon and is a sort of half way house.
Hope the rest of your assessments go well and keep chatting on here with people who understand.
Jeannie, I think you're right that any BC can be spread through the blood system but that doesn't have to be via the lymphatic system. BC cells can invade surrounding blood vessels especially the blood vessels that these cunning tumours programme to grow to supply themselves. Your pathology report after Mx should say whether there is any evidence of vascular invasion. My came back negative fortunately since it had obviously made a bid for freedom via my lymph nodes.
Tash I think it's quite likely you will be offered chemo given the size of the lump regardless of lymph nodes. If you're premenopausal and ER+, you'll also be offered 5 years of tamoxifen to counter the oestrogen which is helping to feed the tumour.
Thanks filosofie.
What I really wanted to establish was that this is no greater with lobular than any other type of breast cancer.
Many thanks.
Jeannie
Dear all,
Mine is Invasive Lobular. DX on 8th Dec and confirmed 8mm lump on 20th with no suggestion of lymphs affected. Had a WLE and SNB on 6th Jan. Margin not quite clear and 1/5 node has it so need to have full clearance and a further bit taken from lump area on 8th Feb next week.
I was originally told just rads but last appointment said it could be chemo too. I won't know until the results of the next op. What staggers me is I haven't had any MRI or CT scan whatsoever. The original mam was on both breasts but they didn't ultrasound my right one at all. Why is the treatment and methods all so different? It's a bit disconcerting really.
I think my lump was stage 2 .. don't know what grade it was as I was too u[pset at the last mtg with my consultant to take much info in! It's all been such a shock. I'm just 45. I also have a mirena. My consultant isn't worried about it as it progesterone not oestrogen (sorry for the spellings!!), my GP isn't sure though and is going to investigate.
Your shared experiences are much appreciated!
Sassy x
Dear Sassy
I think most women who have invasive lobular breast cancer with lymph node involvement, albeit one, would have chemo.
Wishing you well.
Jeannie
Hi Tash and others,
I got the impression from oncologist that invasive lobular spreads via blood stream more than ductal Ca, hence need for chemo. I had Stage 2, > 2cm, Grade 2 cancer. I also had MRI and had a suspicious area in other breast, but core biopsies negative.
Some people can have reconstruction at same time, I couln't as they did not want to do reconstruction if I needed radiotherapy too. They were concerned that it could come back in reconstruction and I have to wait 1 year for all clear.
You are going through the worst time, it all seems so out of your control, it is better once treatment starts, and so far it has all been bearable.
Fiona
Hi Tash
Just thought you might like to hear my story too
Diagnosed with ILC oct 2010, 8 months after 'clear' mammo. CT, bone and MRI scans. Sentinel node biopsy... nodes negative but large tumour 4.9cm and not terribly large breasts meant mastectomy with immediate LD recon.
No radio or chemotherapy just Tamoxifen ( very hormone +)
What I am stressing is that large tumour does not = node involvement
I had the oncodx test which showed I was at low risk of recurrence and therefore unlikely to benefit from chemo
Since had healthy boob reduced and lifted
Everything looking good and feeling very well
E x
Hi guys
Thanx for all the information i'll have lots of questions 2 ask the BCN on fri
Cheers again
Tash x
Hi Tash. and all newbies.
Sorry to hear you have joined this forum, but everyone on here is a great support,
I was diagnosed with Invasive Lobular in August, Had MRI, also 5cm Lump, Also problem with right Breast,Double Mastectomy recommended but in the end they just removed right Breast, Full clearence on Lymph nodes, 15 out of 20 Cancerous, CT and Bone scan showed up other problems, As you can tell a bit of a 'mare!
I have had OP, no reconstruction as not feasable, Now having Chemo no 5 of 6 tomor..wish me luck! Then Rads,Then Tamoxofen,
Would like to say please dont get hung up on The Technical bad bits of the Treatment and diagnosis, just stay strong and get through it, The whole 'Cancer' thing is rubbish but focus on all the positives in life. take all the Treatments they throw at you, ask any questions on this site you want nothins too small.
Good Luck, big Hug x
Dear queen of retail therapy
Please, can you tell me about the oncodx test. I've never heard about this.
Many thanks.
Jeannie
Hi gooseberrygirl
i'm glad i joined this forum only been on it since yesterday,what such great support & help i've had already.
Gud look with your chemo
tash x
Hi Jeannie
It is a test where the send samples of your tumour away ( to USA ) and they carry out a series of genetic tests which give them an accurate prediction of your likelihood of recurrence. I believe it is only used on node negative patients and unfortunately it is very expensive, our medical insurance paid for it in the end although my oncologist didn't expect them to
If you want any more info PM me
E x
Hi Jeannie......me again!
It has to be hormone receptive too
X
And again!
http://www.oncotypedx.com
X
hi guys
Got my results back from my 2nd core biopsy of my lymph nodes , which has spread to the nodes (so now worried it has spread) I will have to have a total clearence now. Haven't reallty got a date for surgery as consultant is going away, stupid periods, if I didn't have them i will be having my MRI on 13th then surgery on 21st. So now got to wait till 20th for MRI & very unlikely have surgery on 21st now as consultant going away on 29th, may have to be referred to another hospital so i can get the surgery done, so fed up now its like 1 step forward and 10 back.
tash x
Hi Tash,
Sorry to hear your news. It's such a blow isn't it, I was devasted when I found one of nodes wasn't clear and I'm having full clearance next week. I just try to take one step at a time and deal with what's ahead of me next. It's horrible having to wait for appointments but I'm sure they'll sort it quickly. Thank God I've been able to go back to work this week on slightly shorter hours so it's keeping me distracted. I know it doesn't mean to say ot's spread but we just want a conclusive result and move on don't we.
Big hugs to you,
Sassy
Hi Tash
You are going through it. The waiting is the worst of it all as your mind goes into overdrive. I was dx in september and had a mx in october with LD construction at the same time. My nodes were clear, but my onc advised that chemo would be adviseable just to mop up anything that was around. I did have to think about it though as I was scared of what chemo was going to do with to my body.
In the end it is only 18 weeks and should be finished by the beginning of May.
Looking back it is all the waiting that does your head in not the treatments.
These forums do help as there is always someone who has or is going through the same thing. I look upon the ones I have read as being a big sister to talk to!
Keep you chin up and keep having positive thoughts
xx
Debby
I just wanted to add my story as someone earlier said that chemotherapy wouldnt shrink ILC. I was DX at the end of May 2011 with grade 3 stage 3A ILC with lymph node involvement. The treatment plan was 8 sessions of chemotherapy (4xEC 4xTAX) followed by mastectomy and axillary clearance then 15 rads. After my surgery I was told that chemotherapy had shrunk my cancer to 2cm which was a massive reduction. Lymph nodes showed a trace of the cancer in 11/12 nodes. I start radiation on the 7th of Feb. I am doing okay, the good days are getting more frequent than the bad ones.
This forum saved my sanity and everyone in here supports everyone else.
Debbie
Hi Debbie
It was me who mentioned neoadjuvant chemo for ILC. I wanted to reassure Tash that even though she will see lots of people on the forums who have chemo before surgery, she was having the right treatment for her. The research suggests that very few people with ILC have a complete pathological response to pre-surgery chemo and therefore it is more usual to go for surgery first. However there is evidence that it can shrink inoperable tumours or even shrink tumours to a small enough size to have WLE rather than Mx. My BS felt that the Indian file pattern of cells spreading out from my tumour meant that Mx was the safer option even though the tumour wasn't very large. I was happy to go with her judgement. However I guess your case was different from mine as yours was higher grade and stage. It obviously worked for you in shrinking your tumour and gave some reassurance that the chemo had done some good. The rest of us are just hoping that it is worthwhile.
In the end we have to trust our multidisciplinary team to make the best judgement for us, though that doesn't preclude asking for explanations. I think the NICE guidelines which try to ensure that we all have multidisciplinary teams deciding on best treatment have done a lot to optimise care.
hi folks.
i went to breast clinic on 20/1 as i had pain in right breast for a while - no big lump as such, but the breast felt unusual and right side of it heavy/ a bit hard. I'm 37 so really didn't think it would happen to me so you can imagine the shock when the mammo disclosed calcification then the ultrasound disclosed two tumors on 17mm and the other 15mm with a mix of DCIS and LCIS covering a total are of 10 x 8. cm. I am told this is not all cancer but a mix of precancerous and early changes as well as the 2 tumors which I am advised is usual for ILC. it's grade 2 and 7/8 hormone receptive. Ultrasound shows nodes as clear and I am told that the ultrasound if 90% effective. Booked for mx on 22/2 Had abdil , chest and bone scan which are all clear.
I am distraught beyond belief. I am so worried it has gone to the nodes. Can anyone help?