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Invasive lobular cancer

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mrsorangecat
Member

Re: Invasive lobular cancer

Hi Millie, sorry just a quickie as I'm heading out but i would recommend a breast surgeon to do it as breasts are their speciality and they operate on them all the time. Plastic Surgeons operate on all parts of the body. My NHS breast surgeon did an amazing job of my mastectomy, its really flat and neat. Maybe I'm biased as i work for the NHS and had my treatment on NHS but i personally wouldn't go down the private route. There are many benefits in keeping your care within NHS, all the teams meet together at MDT meetings so your individual case is well discussed at all stages by breast team, pathology, oncology etc and you are allocated a breast care nurse via NHS which i don't think you'd have access to if you went privately. Mine is fabulous and a great support. The NHS aftercare is better than a private hospital in my humble opinion. Good luck with it all, it's scary but have faith and you'll be ok xxx

 

 

Anniej
Community Champion

Re: Invasive lobular cancer

Hi Millie, my surgeon took great pains to leave as little scarring as possible. I think if a plastic surgeon is necessary you'll get one on the NHS, unless it's elective surgery. The medical team I saw were very aware of the impact of poor body image on a woman. I did not want reconstruction, so they designed the surgery accordingly, going through the nipple and extracting the aggressive ductal tumour that way. No scars, but bit squashed boob. Explain your fears and in my experience they'll do everything they can for you.

I would weigh up everything on offer before spending your money. Good luck. X

Patriciamay
Member

Re: Invasive lobular cancer

Hi millie

 

a quick google (although I know we are banned) will confirm if your surgeon has a private list.  You also need to know who is going to carry out the surgeon, you want your surgeon of choice not their SpR, who might be operating under supervision of the consultant surgeon.  Your NHS surgeon has a duty to ensure the outcome is clinically viable and presents well.  They should be discussing in detail of how he/she achieves that and the appointment should be about 1 hour long.  Hope this helps, good luck. Xxxx.  P.s. My choice but I would never go private.

ann-m
Community Champion

Re: Invasive lobular cancer

Hi Millie67,

It's your choice, but most of us are quite happy with the surgery we've had on the NHS, the outcomes are not necessarily any different. Most surgeons have private practice as well as NHS, so it's quite possible it will be the same surgeon anyway. Those who have gone privately will also advise.

ann x

 

Millie67
Member

Re: Invasive lobular cancer

mri shows more, mastectomy now the plan.....rather scared after looking up pics with reconstruction to be honest 😞    i presume i need to pay for plastic surgeon if wanting a better outcome

Millie67
Member

Re: Invasive lobular cancer

Thankyou helps alot xx

Sue H-S
Community Champion

Re: Invasive lobular cancer

Millie67

I have to agree with MrsOrangeCat.

They removed 3 at the time of my mastectomy, too, which was in May 2016.

All has healed well and I have been and am still doing the prescribed excercises post surgery.

These excercises are very important to ensure that you get back the full use of your arm, i.e. being able to stretch it properly, etc. I was back using the arm, doing housework, a few days post the operation. I was careful, of course - lol.

There can be some shooting pains and similar appearing - but this is nothing to worry about, quite the opposite. It is a sign, that your nerve endings, which may have been compromised during the op, are trying to knit back together. And once they have, the numb area you may be experiencing at the back of your upper arm, starts to go away.

I am now nearly a year post my operation, having also gone through chemo and radiotherapy - and the numbness in my upper arm is starting to dissappear slowly. 

Hugs

Sue x

mrsorangecat
Member

Re: Invasive lobular cancer

Sorry Millie, forgot to add, I had mine done in Dec and now apart from a bit of numbness under my arm and across my chest, it's all ok, that's my experience anyway X
mrsorangecat
Member

Re: Invasive lobular cancer

Hi Millie, I found the removal of the sentinel lymph nodes (they took 3 from me at same time as doing the mastectomy) ok, I wouldn't say it was painful, more like discomfort and I'm a bit of wuss at the best of times so if I can deal with it you will for sure 😁 Big hugs H xxx
Millie67
Member

Re: Invasive lobular cancer

I am recently diagnosed with ILC.....it is very small.....due mri next week, then surgery...I have had a lumpectomy before with LCIS but this time removing nodes for testing.....I am wondering how much worse this will be as read alot re pain etc with it?.......lots of people saying long term??.I also have 2 large cysts to be removed too.......the plan at the moment is radiotherapy after unless mri or node test shows differently.......Still strange to be here but im very grateful so far looks like early.....thankyou ladies xxx

mrsorangecat
Member

Re: Invasive lobular cancer

Hi BooRadley, i just wanted to say hello and sorry that you are in the position to be on here too, but as Sue has so brilliantly written, this is a fantastic site, full of warm, inspirational women who support each other, so you are definitely in the right place.

I also had a grade 2 lobular type, it was a biggie at 7.5 cm and I decided to have a mastectomy from the outset. I'm so glad I did. I knew that I wanted the least amount of surgery possible as i didn't want to risk the situation of having a wle and the margins not being quite good enough so having to go back in for mastectomy and a second surgery.

It all went really well and I have a lovely flat scar, god bless the surgeon. I'm coping well with the mastectomy, had it done early December. I didn't have to have chemo, they did the oncotype test for me as i had no node involvement and it was deemed low risk for recurrence and chemo would be of no benefit, so I start radiotherapy today. 3 more weeks then I can get on with the rest of my life. It is a raw, emotional time, all the tests, the waiting for results, surgery, treatment etc etc but you will get through this, I promise and if I can help with anything please let me know. Big hugs, love H xxx
Sue H-S
Community Champion

Re: Invasive lobular cancer

Hi Booradley107,

 

It is great that you have chosen to join the forum, although I am sorry you are finding yourself here.

No one really wants to be here, but for those who have been diagnosed and are being treated, as well as long past our treatment ends - this is a place of much support, helpful advice, laughter and joy and rants, too. Most of us would not know where we would have this so much needed support elsewhere.

As you may have got from my previous postings I had a lobular invasive, too. It turned out to be a Grade 3, Stage 2B. The stage, due to it's size - but thankfully it had not spread to my lymphnodes.

Opting for a mastectomy may turn out to be a blessing in disguise and I applaud you for the decision you have made. When I was initially diagnosed and after the MRI it appeared to be a 3cm tumour. However, after the operation, when the pathology results came back - the tumor itself was 2 cm, but the tentacle like strands of the invasive part of the tumour had spread considerably from the initial site. As I am relatively small breasted - would I have chosen a lumpectomy it - would have meant a further operation, which would then have been a mastectomy. It is unfortunate that lobular invasive is a secretive thing spreading via strands, which sometimes cannot be picked up by the MRI, as they may only be a few cells wide.

Please do not be scared - I know, it is easy to say......I had an implant reconstruction at the point of the mastectomy, which did much to keep my spirits up to commence treatment afterwards. Initially the treatment team thought I might get away with just taking hormone inhibiting tablets.  Hence their agreement for the immediate reconstruction. As it turned out, I had to go through chemo and radiotherapy, due to the size of the removed cancer. This has affected my implant. However I am due to have it replaced in about 12 months time.

Now, a couple of months past my initial diagnosis my health is recovering well, I have had the all clear and am moving forward with the rest of my life.

I keep my fingers crossed, that you may avoid the more drastic treament options. Your follow up treatment plan tends to be discussed about 2-3 weeks post your operation, when the results of the tissue examination are back.

Hugs

Sue x

Booradley107
Member

Re: Invasive lobular cancer

Hello first time I have written on here as just been diagnosed with lobular cancer. Stage 2 with 2cm tumour. After MRI scan they found another 2 tumours. Not sure if cancer as well but nurse says they appear to be from appearance.
Could have more biopsies etc however decided have a mastectomy. Get it over with and start treatment.
Feeling positive but very scared.
Sue H-S
Community Champion

Re: Invasive lobular cancer

Hi LisaT

The post I wrote is a little while ago.

Since then I had my operation (mastectomy) and SNB - all nodes were clear.

Chemotherapy and radiotherapy followed - they threw the book at it, lol!

I am now recovering well from treatment - my scars have healed, my severed and compromised nerves in the arm are rebuilding. Considering the recovery time post the treatment I had is 6 - 18 months - I feel I shall be completely back to normal by 8 months post last active treatment.

I feel great! My eye brows, eye lashes and hair are back - my nails look beautiful.

When were you diagnosed and what have they planned for you?

Sue x

LisaT
Member

Re: Invasive lobular cancer

Your story sounds like me. How are you today? Did you do treatments? 

Sue H-S
Community Champion

Re: Invasive lobular cancer

Hi Sasha, reading the thread, you should just about be out of surgery - and I hope all went well for you. I have an invasive lobular, too - thankfully my nodes are clear, but because of the size it eventually was after the final pathology results - I had to have a CT scan today to ensure all is clear elsewhere. Anyhow - as to how quickly you will feel better. I had a mastectomy with reconstruction (no one thought it would be this big) otherwise would have had a different op. They took 3 lymph nodes at the same time. I stayed in hospital 2 nights and when home immediately got some much needed housework done! Great to do as good exercise to make sure you get the use and stretch of your arm back. I stayed at home for one week recovering, as wearing a post surgery bra was not very comfortable and I did not dare to drive. However in week 2 after the op, I did a little test drive (with my drain still in place) and it went fine! So worked from home in week 2 and went back full time in week 3. Recovery after the op is likely different for each and everyone of us - as there are so many variations to the actual operation we have. Wishing you a speedy recovery from the op - let us know how you are getting on - we are here to support you as much as we can.
Powdow
Member

Re: Invasive lobular cancer

 
betty67
Member

Re: Invasive lobular cancer

 
Sascha
Member

Re: Invasive lobular cancer

Thank you everyone, I am amazed how all over the place emotional I am and in so many ways the biggest thing is the fact that I have cancer, that is such a systemic shock for me......it feels like an inner earthquake. I feel so insecure about everything now, my future, friends, my partner, how I feel about me, it really is earth shattering...........

I am doing positive things - I have the Rainbow Diet and I will look into oestrogen blocking alternatives and pother things I can do but right now it jsut feels so overwhelming...

I went shopping yesterday and found nothing I could wear afterwards but today after some ideas I saw on another thread I found some adjustable strappy tops and a couple of nice shirts to wear afterwards, things I can get on easily so I feel slightly better. Still churning inside but at least I can see I might look a bit human afterwards.

Lorna45
Member

Re: Invasive lobular cancer

Sascha, it's amazing how we learn to cope and bounce back. I had ILC , tumour a scary 11cm, 9out of 24 nodes positive. I've survived chemo, total mx and full clearance, rads , and now on tamoxifen. I feel well and treatment only finished in jan. you will get there, just think 1day at a time.

Love Lorna.xxx

Tina46
Member

Re: Invasive lobular cancer

I can only support what has been said before, my dx and treatment was in 2010 and I wondered if my first thoughts in the morning and last thing at night would be from then on 'OMG I have been diagnosed with cancer' but gradually through the process of treatment and after, life just goes on quite normal, maybe not the same as before, but for me personally, I feel happy (of course, there is worry when aches and pains or check ups come around, that's to be expected) and look forward to all that life has to give, seeing my boys grow up, holidays etc. None of us is to blame for our diagnosis or could have prevented the situation we find ourselves in. I was determined to get through treatment, my last op was in Dec 2011, and like Elinda says, statistics are just that, who knows what will happen! Be kind to yourself. x

elinda45
Member

Re: Invasive lobular cancer

Sascha

Just responded to your other thread and seen this one. You know what, I take absolutely no notice of stats and have never asked. You don't know what side of the line you'll fall with stats so what's the point. I think worrying about those is a sure route to feeling very depressed.

As Lulu says, it's okay to have all these different feelings. It's what makes us human. Please don't beat yourself up. It takes time to adjust to getting the diagnosis but I promise you it does get easier.

I remember going into Costa Coffee shortly after I was diagnosed and thinking that life would never be normal and I'd always have that gut wrenching feeling. I'm now 3 years since diagnosis and in the last year I've been into Costa a few times and I can tell you I've not had a thought about cancer even after going to see the Oncologist for a check up. The mind has an incredible way of adjusting. I remember someone on the helpline telling me that when I was at a terrible low point and I found it hard to believe but it's true.

I'm not saying I never have low points 'cos I do. But that's okay too as long as most of the time I'm not thinking about it all.

take care and a big hug to you
Elinda x

Lulu34
Member

Re: Invasive lobular cancer

Sasha iv not got ILC but I am a friend of flowers and she was exactly like you at the start and now she is able to offer great advice and support.

Don't hate yourself... Hate the cancer! You need to love yourself... Don't put pressure on yourself to think or do certain things just allow yourself to be scared, upset and angry.... But not for ever.... If you find you are really struggling to cope you may find it useful to talk your worries over with a counsellor or maybe see if you gp can prescribe something to relax you or antidepressants... Its pretty common to get ADs during treatment or a dosage adjustment for people already taking them.....

In a couple of months you will be like flower being able support others.

I look at chemo as writing off six months of my life but it's worth six months to me if it gives me another 10 or 20 or 30 even 40 years without cancer.... I'm also stage 3 with positive lymph nodes and just finished treatment and looking ahead to holidays and returning to work within a year of diagnosis.

Take care x

Sascha
Member

Re: Invasive lobular cancer

Thank you Kathleen....I hate myself for feeling like this.

katyb61
Member

Re: Invasive lobular cancer

Sascha, none of us is any stronger than you and we have all had the feelings you describe. I was so phobic about bc that I couldn't bear to wear a pink ribbon! I never wanted to be one of the sick people - how's that for arrogance and stupidity? The thought of chemotherapy would have been unbearable to me this time last year.
I was diagnosed in October 2011 after ignoring pain in my breast for several months . My lump was 4.9cm. I had mx in November and flew to London for my son's wedding 11 days later. I've just finished chemotherapy and have started 15 rads. I started on tamoxifen this week. None of it has been anywhere near as bad as I feared and nothing could be as bad as facing the knowledge that you were fighting this thing without any of the weapons modern medicine can provide.
Wait for your post-op biopsy results, listen to what the oncologist advises and make your own decisions then. Only you can know what is best for you. I wish you the very best in whatever lies ahead. People here will always understand and support you. You are never alone.
Love,
Kathleen

Sascha
Member

Re: Invasive lobular cancer

Thanks everyone for the replies, I am self employed and not able to work as there were complications from the biopsies. With any medical treatment you can guarantee if there is a complication to be had or an allergy to anything essential then I will have it or get it. I feel exactly like Flower describes so eloquently, and my neck and shoulder have hurt for months and now I think the cancer has already spread to my brain or throat as there is no other reason for that.

Although you are all great and really supportive, underneath I feel intensely lonely, and I don´t want to spend the rest of my life living with this dread. I have enormous fear of hospitals and realised I actually fear cancer treatments and cancer more than death - that will give you some idea of how unbearable I find all this. Sounds selfish when so many of you are fighting for your lives, but I have to be honest. I even find myself obsessively looking at other women´s breasts.....and envying them.........they take it for granted

I am not in the UK so things are done a bit differently here and there are so many budget cuts that also scare me. I am a VERY independent person normally, my life was in a better stage than it had been for a few years, and now I am in a place where I feel gut wrenchingly miserable and don´t even like myself for feeling the way I feel so doubt that others can. Although I do have some good friends, I think I will drive them away as I am so different now.

I do have my diagnosis and treatment plan - Stage 3 grade 3 ILC in lymph nodes too (from biopsies), then they want to throw everything at me, but I have NEVER agreed with chemotherapy in principle and I just do not want my life or emotions to be dominated by ugly treatments for an ugly disease. I have many negative reactions to drugs, (medically diagnosed by bad experiences) so I just dread any of the systemic treatments as the drugs most people take to deal with side effects I am not able to take as I react too badly to them (breathing issues, locking up syndrome etc).

I am sure I am going to irritate or annoy some of you stronger people than me, but that is how I really feel. Sorry I don´t mean to upset anyone.

Surgery is in 5 days.

Patchit
Member

Re: Invasive lobular cancer

Sascha

I can totally agree with all that Flower and Wintersocks have said. I was diagnosed with ILC last October and had an mx in January, My tumour was 57mm and I beat myself up that I hadnt noticed something earlier. My surgeon said that it could have quite possibly been growing for up to 5 years! BUT I have no spread to my nodes or anywhere else! I am having chemo at present, then rads and tamoxifen, but for me they are a preventative measure.

So, there are lots of treatment options. Once you know the results of your tests, they will make a treatment plan with you. It is all a big shock and you need to come to terms with what is happening, but you will have time to do that, somehow, things will have a perspective for you. I try to deal with things in bite size chunks, like wintersocks has said. Its best to cope with the here and now rather than worry about what might happen in the future.

Big hug

Joan xxx

wintersocks
Member

Re: Invasive lobular cancer

Hi Flower/Sascha

What a lovely post. I am taking on all you say to Sascha, it is all so true.

Sascha, I think you have to prepare for a bumpy ride (I too have ILC) diagnosed Feb 12. which I know has been there some time, My worse fear was spread but after numerous tests was amazed it hasn't. My lump/mass is 5cm and I am having chemo to reduce it first.

I think Flower is correct in that we need a time to grieve, to accept where we are now. I try not to fight things with 'whys' as it takes up too much energy, I have just got out of hospital with an infection following chemo and I will need all my mental/physical strength to overcome that little episode.

try to break things down into manageable pieces if you can. this is what I did. Today, MRI, tomorrow CT etc. You will get unexpected happenings as I did with the infection, but mostly you can deal with things 1 thing at a time.

I still have not read all my path report, as I don't feel able to do so yet and as one lady on here told me 'don't' - do it when you are ready. As soon as I had 'permission' to do that, I was able to concentrate on what I needed to do today. It has kept things calmer for me and my children.

You will have at times strong and intense feelings that may threaten to overwhelm you. I did. I just expressed them on here and people usually respond and we get wise words and help. Go with the feelings, allow them to be, and cry or whatever you need to do. If you are really not managing then seek some professional care to help you cope. I have anti- depressants and a good GP.

I am not sure where you are up to with your dx. but I am sure we will all help if you have any questions, and you in turn (when you feel ready) will help others

Best Wishes.

WS

Flower20
Member

Re: Invasive lobular cancer

Hiya. all those feelings are totally normal. i still get them. I am envious of people going about their normal lives without having to think about cancer ( but in reality you don;t really know what is going on in people's lives). you are going through a grieving process. Loss of your old (carefree?) life, loss of security of health ( the toughie for me), loss of hopes and dreams ( they will come back though), loss of life too. It is horrible and acute and you feel as if your world has been shattered to pieces. BUT you will get yourself together again. You are at the worse point. Knowing you have cancer but not sure exactly what is involved until you get your scans etc. My advice would be to remember, you have caught it. ILC tends to take a bit longer to spread outwith the breast / nodes too. You will be getting treatment. Don't get hung up on stats. Thats is all they are - figures. There is LOADS of treatment out there. Remember, stages1,2, and 3 are still classed as early stage breast cancer. Things will get easier when you know what you are dealing with. Believe me. You will start to regain some semblance of your old life x

Sascha
Member

Re: Invasive lobular cancer

Thanks Flower, had a really bad day today, tried to have a normal day but instead just feel overwhelmed with this sense of dread...this cancer must have been lurking for quite some time, I could have it everywhere by now, and I just don´t know how to feel safe in myself again. Does this sound mad? How do we ever feel normal again? I feel so out of the normal world now, it just does not feel the same, and I do not want to be in the cancer world......

Flower20
Member

Re: Invasive lobular cancer

hiya
don't be hard on yourself. I was the same. I was paranoid about my boobs as I lost dear friend to BC when she was 29, so i knew it really could happen. In fact I think her loss made me go to docs. I dodn't have any lumps- just pain that came and went. I actually never seriously thought for one minute it could be cancer. My boobs were always lumpy. In fact, this time was the third time at the clinic in 10 years- i didn't mess about and I am only 37. third time unlucky for me!

Sascha
Member

Re: Invasive lobular cancer

Yes I read that even if you are exhausted with the awful cancer fatigue exercise has been found to be nothing but positive and surprisingly to help reduce fatigue!. I am a Zumba addict and still do it now...two planned at least pre op, if not 3.......plus I have dogs to walk!

I also plan to take mega painkillers so I can be sure to do the exercises to avoid lymphoedema as that scares the hell out of me

I am trying not to blame myself for not noticing, but mine came on really fast, from being normal (for me) kind of heavy feeling and a little lumpy to this huge mass in literally weeks........

Thank you for your support........xx

Flower20
Member

Re: Invasive lobular cancer

hi. I had to have a LNC after my sentinal node came back positive. I had all my nodes removed under right arm and have had no problems since- at all.
I used to run all the time- ran 15k a few days before I was diagnosed. Haven't done a jot of exercise since ans I haven't felt well either emotionally or physically. I am going to go back to it though as I believe my physical fitness helped me get over ops and with chemo too. Going to gym tomoz to walk on treadmill. I used to be able to run 5k in 24mins !!! Changed days, but they will come back.x

Sascha
Member

Re: Invasive lobular cancer

Thank you Flower. I do feel better knowing what it is - the weeks of not knowing but being told I definitely had cancer with significant tumoration were horrendous, a long month this April......amazing to think I was BIRADS2 and told it was benign from my mammogram just 5 weeks ago!

ILC certainly does lurk and hide and so it is nearly always more advanced when found. I feel better hearing from so many people on here with it with better odds than I was given (and which I have already discounted as incorrect) yet also being Stage 3......

The issue of chemo is a funny one...but then every cancer is unique.......I would need to have very significant statistical improvement to go through that.

What worries me most about the surgery is my LNC and how it is afterwards.......going by the biopsies my breast area will not have much pain, but underarm, wow, a horrible sicky type of pain. How long does it take to feel ok and be able to go out etc again? I don´t want to lose my physical fitness by lazing around.....

Flower20
Member

Re: Invasive lobular cancer

Hi Sacha
Sorry you have to join us, but you know what, now you know what you are dealing with things do get easier. The op is doable, I was dreading it, but got through it. You need to know this.
I was in a total utter state at first. Couldn't open curtains or make a cup of tea. I found trying to find out as much info about my condition helped me. Some ladies are opposite, but it is whatever suits you. You will get through this. Doesn't feel like it for you at the moment, but you will. PM me if you need to x x

Sascha
Member

Re: Invasive lobular cancer

Update - was back at the hospital today as oncologists now involved - I am Stage 3 locally advanced Invasive Lobular Cancer with cancer in lymph nodes (looking at this site I make myself 3A).

Mastectomy and LNC now booked for 2nd May......

Ruth13
Member

Re: Invasive lobular cancer

OOps= miss print Jeannie meant stage 2 grade 2 no ln!!

Tina46
Member

Re: Invasive lobular cancer

The lifetime risk in the UK of getting breast cancer by the age of 90 is 1 in 8, however the risk relates to age, about 81% of BC occur in women over 50. Your risk of having a bc dx at age 39 is 1 in 219, at age 59 is 1 in 22. Once you had a dx of bc, your have an increased risk of a new primary in the other breast. This risk is higher for ILC than IDC. Depending on which material you read it varies up to 26%. BCC has a page on risk, explains the difference between relative and absolute risk, too.
http://www.breastcancercare.org.uk/breast-cancer-information/breast-awareness/am-i-risk/risk

sheil
Member

Re: Invasive lobular cancer

Hi from me, another ILC.
I was diagnosed late 2010 with bilateral ILC, biggest on left was estimated around 2cm. Was recommended a bilateral Mx with immediate recon, but then had SNB which came back clear, so I decided I'd hang on to them for a while yet. Even after the Bilateral WLEs which found another 3mm one within the margin of the biggest which was 2.2cm.

Contrary to what most people would do I know, but I focused on the most recent research which mostly concludes that ILC has no worse, and can have better outcome than IDC as it responds well to hormone therapy. And most studies say that prognosis is based on biggest tumour, not total tumour load. Also liked Susan Love's position that around 40% of removed breasts will have multifocal spots somewhere and the radiotherapy is good at cleaning these up, and I had rads on both sides. I didn't have chemo as this wasn't recommended - which I found a bit odd when you think.

But to give me a bit more peace of mind I also had the Oncotype DX test done, expensive, but I really wanted to be reassured that my situation wasn't as serious as they'd have me believe. Results came back low risk of recurrence on both sides, so I do sleep at night.

Susan Love also says lobular can be result of 'complicated hormonal history' - I had endometriosis, on pill for years, had unsuccessful fertility treatment, then went on HRT at the first sign of a hot flush, so I like to think its all those hormones that did it, and now they're being sucked out of me at a great rate by letrozole, I should be fine. What an optimist I am!

Maybe a bit of denial, but I feel OK with my decision. I do hope you all get to the peace of mind point.

S
X

Sascha
Member

Re: Invasive lobular cancer

Wow its a minefield isn´t it!

What does scare me about the other breast is that mammogram did not find my current tumours (and they are not small), it grew exceptionally fast, neither did two ultra sounds done by someone with a very good reputation for accuracy find it, only an MRI with contrast did. ILC is renowned for being difficult to detect so I don´t want to live with fear for ever......and I did not feel any lumps until my lymph nodes were inflamed, I just have a large tough dimpled very hard area.

So how can I ever be certain I will not get it there when the most likely place it will spread to is the other breast?

Interesting you say it spreads by blood as my biopsy (of last week) says there is no vascular infiltration from the breast tissue sampled but metastasis in axial node which was huge.......so maybe this is good news?

I have had a huge rash in the base of my cleavage today which has gone across to my left breast - is this a sign of anything as its not normal for me?

PuffyWhiteClou
Member

Re: Invasive lobular cancer

Thanks for the explanation Fi. I thought that's what you meant about 1 in 8. I interpet the statistics differently. Yes, lifetime risk for women in UK of getting breast cancer may be 1 in 8 but I really don't think it follows that having had breast cancer in one breast there is still a 1 in 8 chance of getting it in the other breast.

Jeannie
Member

Re: Invasive lobular cancer

Dear Ruth13

I'm interested to know why you are saying Stage 3 but that you had no LN? Do you mean lymph nodes?

Jeannie

Ruth13
Member

Re: Invasive lobular cancer

Sorry not read this thread for aday or two,

What I meant re 1 in 8 etc is that in the UK 1 in 8 women will get breast cancer now, but once you have had invasive lobular BC the risk of getting it in the other breast is higher, about 17% chance I believe. They will do a prophylactic mastectomy of the other breast in some areas, often you have to see a psychologist first!

Some areas they will do screening MRIs, other areas they will not, they won't in my area.

I am going to ask to have prophylactic MTX if I can.

I had Grade 2 , Stage 3 ER and PR strongly +, HER neg, no LN, was told 37% chance recurrence ( distant mets)in next 10yrs with just MTX- lobular spreads by blood; reduced by FEC-T by 15%, and with tamoxifen by another 11%.

Some interesting links for me to read above now, but now chemo over, just trying to start to get on with life again

Fi xx

Flower20
Member

Re: Invasive lobular cancer

Hi Sacha
Difficult to say what I would do in your shoes as I don't have all path results. At moment, I intend to keep my lonesome boob. I've already had 2 mammos of this, and US and MRI scan. If they don't give me an MRI scan on the NHS I am going to pay for one myself. Personally, I wouldn't rely on mamos and US for ILC. My mammo did't pick up my three tumors ( 3.1 cm, 1.9 cm and 1.7 cm). Only picked up calcifications. In fact, the US missed the 3.1 tumor altogether. Scary. x

Tina46
Member

Re: Invasive lobular cancer

Sascha, have a look at the grading&staging info from the Macmillan website
http://m.macmillan.org.uk/article/name/cancerinformation-cancertypes-breast-symptomsdiagnosis-stagin...
You won't have the full picture until the pathology is available after your surgery. You don't have to decide right now about the prophylactic mx on the other side, maybe you can consider that after your active treatment has finished. I am sorry you have so little support, and the cultural differences must be making this very hard on you. Hopefully the support from the helpline & forum will help. It is always worth remembering though that no two breast cancers are the same, even if the pathology looks similar.

Bethy
Member

Re: Invasive lobular cancer

Hi Sacha
I am now 48...was 44 at diagnosis. I had a Lumpectomy , full axillary node clearance, 6 x FEC Chemotherapy , followed by 30 X daily radiotherapy. 8/8 Hormone positive.. Now been on Tamoxifen Since April 09.
x

DJ007
Member

Re: Invasive lobular cancer

Hi Sascha

Any breast cancer that is confined to the breast and lymph nodes is classed as 'early' or 'primary'.

I had invasive lobular, grade 3, ER++. It was big (5.5cm x 2.5cm) so it was an immediate mx (and immediate recon). Final results also showed it to be multi-focal, so the mx was def needed, and (surprisingly, given ultra sound results) all lymph nodes were clear - so with hindsight the full ANC wasn't. However, because of the size of the 'lump' I would still be classed as stage 2.

My stats were given to me as: 10 year survival after just the mx 75%, with chemo and tamoxifen 88%. Risk of recurrance after just mx 50%, with chemo and tamoxifen 23%. I also had rads - which none of the predictor programmes seem to take into account.

I finished active treatment last Sept - have been back at work full time since November and I'm off to South Africa on hol next week.

Good luck.
Dx

Sascha
Member

Re: Invasive lobular cancer

Thank you Bethy, it all helps......

Do you mind if I ask what treatment you had and how old you are?

Bethy
Member

Re: Invasive lobular cancer

Hi Sacha
I was diagnosed in September 2008 with Grade 3 Invasive Lobular BC with 10/21 Lymph node involvement. At my annual check with my consultant I have a breast MRI as well as Mammogram & Ultrasound on the "good" side.
I also see my oncologist every 6 month .... so far so good:-)
Best wishes
Bethyx

Sascha
Member

Re: Invasive lobular cancer

Blunt yes most definitely - there are no breast cancer nurses, I even had to sign the consent form there and then! I have to say I was not really expecting anything else, but when I asked about my other breast I was told it would be monitored by mammogram. But my current cancer was not found by that so it does not inspire me with confidence!! I do not know if I am Stage 2B for sure it may be higher but grade 3 and 90% is the element that worries me a lot more especially as I do not have an actual surgery date yet and I have already been waiting 2 months since symptoms first appeared when there was no lymph involvement at all.

Do I count as early stage then as it seems pretty advanced now and is in other tissues in my breast as well as nodes according to the numerous biopsies that were done?