Pleomorphic ILC

Anonymous

Hi  

I have been sitting on pins and needles waiting for the results to come back from the oncotype test.  Depending on the results I would either have chemo or proceed with reconstruction.  I was told it would likely be 3 weeks for the results to come in, which would have been last Thursday.(Feb 25)  I was away for the weekend and didn't hear anything before I went away. Anyway, when I returned my oncologist had called as well as the lady running the clinical trial at the hospital.  The Dr  left his cell number for me to call him because he is on holidays for two weeks. (Imagine, not too many doctors would do that)  Anyway, he said that they couldn't do the test because they didn't have enough tissue, so I need to decide what to do without the test results.  I will go see him when he is back from holidays.  Then I called the lady who is doing the clinical trial.  She explained that California contacted her that they need more tissue in order to do the test.  She contacted the hospital in Toronto where I had surgery done and she said she actually spoke to the pathologist, who said they don't have any more tissue to send?????  I don't understand this.  She said that she has asked them for something in writing to this affect, and if she has any difficulties, she will have to get Dr  to look into it.  In lieu of what has happened in Windsor, I just don't have a good feeling about this.  What have they done with "my tissue"? I have the pathology report from the surgery and there was .5cm of PILC tumour, which according to the details of the trial, would be sufficient to do the test. 

So as it stands, I don't have test results and need to make a decision on what type of treatment I should do. Chemo or not?  Obviously nobody wants to have chemo, but this test helps decide whether this is beneficial or not, so I'm not sure what I should do?

Any advice would be greatly appreciated,

Cathy

suzieq60

Cathy: We don't even have that test over here and I wasn't paying $6000 to send a sample to the states. Seeing you were grade 2, I wouldn't have chemo even with the pleomorphic status. Your tumor is of a size that is in the grey area for having chemo. Debra, who also posted on this forum lives near me in Oz and her PILC tumour was 1.2cm I think, and she was told there was only a 5% benefit and decided against it. The only reason I'm having chemo is because of my Grade 3 HER2 status. If it had not been HER2, my onc said he would have discussed chemo with me but I doubt I would have had it.

Sue

Anonymous

Hi Sue

Thanks for sharing that.  I am from Canada, so the only way I could have the test done without paying for it was to enroll in the clinical trial.  I appreciate that this test is somewhat new, and women used to have to make these difficult decisions without the test.  I just think that since it is now available, and is another tool to help make these decisions, it would really have been helpful to have the results.  It kind of feels anticlimatic, I waited 3 weeks for the results, only to be told inconclusive? Plus I would like to know what happened to the tissue?

Cathy

Anonymous

cathy----that's gotta be sooooo frustrating for you! I know that frustration of waiting all that time and then not getting an answer-----they were trying to figure out my receptor status to determine whether or not I should go on tamoxifen; come to find out the tissue sample wasn't big enough to test; so then they decided I could take it anyway (as there wasn't anything else to offer me at the time--now there's Evista as well as tamox for LCIS). I hope they get things straigtened out for you soon.

Anne

suzieq60

Cathy: What if the test isn't 100% accurate anyway. Only time will tell. My onc didn't recommend having the BRACA gene test as he said it's not reliable enough yet, so you never know with these new tests.

I do wonder what they did with your tissue. Imagine if I'd got some sent and paid all that money and they lost it or said the same thing. 

Sue

Debra16

Hi Cathy,

I haven't been on here to notice your post until now, sorry.  I did have a very similar diagnosis to you, as Sue said, but the tumour was 13mm.  I did decide, after much agonising, that chemo wasn't worth the trauma, with a possible 5% improvement from the stats I was given.  I feel I was very lucky to have been diagnosed with early breast cancer, and to have a clear margin, clear lymph nodes and the knowledge and ability to improve my lifestyle to give me the very best chance.  I understand your concern, and I would probably feel the same. It's very hard not to get caught up in 'fear mode'.

Follow up on the missing tissue and then let it go and focus on yourself and your healing journey.  I have a background in alternative therapies and have regular 'discussions' with the hospital and ask far too many questions for their liking.  But ultimately it's my body and my life they're managing (for the moment) and the more I speak with them, the more I realise they don't have all the answers.  Your diagnosis looks quite promising though.....I hope you can come to a decision you are comfortable with so that you can get on with your journey back to good health........good luck and best wishes.

 Debra

IllinoisNancy

Hi Ladies,

I am a PILC also and my wonderful breast surgeon and oncologist have both told me not to worry about the Pleomorphic part.  It isn't any more aggressive than regular IDC or ILC.  As you can see my Oncotype score was a 9 so they all agreed chemo was not necessary.  I am feeling good and starting my 4th year of Tamoxifen.  I think the cancer is behind me and thank God every day.

Take care,

Nancy

Anonymous

Hi Ladies

Thanks fo much for your words of encouragement.  I know I have more reason than not to be optimistic with my diagnosis, but just the same, having that "score"  I think would just help to confirm and alleviate some of the fear that goes with not knowing what kind of decision to make as far as chemo goes.

I spoke with the lady who is running the clinical trial at my hospital the other day, and it would appear the tissue isn't missing, but rather they don't have 2mm of invasive to give to California.  This really annoys and frustrates me.  Why don't they have 2mm of invasive to give to California? I have a pathology report that says there was 5mm, so I don't think it is rocket science to figure out 5-2=3?  There should be more than enough tissue in order to perform the test, so where is it? Or did it never exist?  I see my oncologist on Wednesday, so I am going to ask for a reread of my slides.  It makes a big difference in my mind whether or not I had an invasive cancer.  I know there isn't anything I can do now about the bilateral mastectomy, I can't change that, and whether or not I would have had a unilateral vs bilateral had I not had invasive, who knows.  But I do know the affect on me physchologically, I need to know, or even if it is less than 5mm, I want to know. Here in Ontario there is currently a big news story of a woman in Windsor who had mastectomy in January and now found out she didn't need to because the pathology was wrong.  The pathologist is now being investigated.  This is all enough to drive one crazy.

Cathy

raeinnz

Hello everyone

Even though I am a new member I feel like I 'know' a lot of you already because I have read these discussion boards since dx in Jan 09 - being able to 'visit' has been a sanity saver at times and I thought it was time I said thanks a lot for your contributions.

Count me in as PILC.  Here's my journey so far - following a routine annual mammogram when a very clued up doctor saw a thickening of tissue and then did an ultrasound, I was diagnosed as ILC in the left breast and decided after a lot of reading and against my surgeon's better judgement, to have a mastectomy rather than a lumpectomy and radiation because I was concerned about the difficulty of getting clear margins with ILC and didn't want radiation. I then decided on a right prophylactic mastectomy as well as I was concerned about the high occurance rate in the other breast associated with ILC and I definitely did not want to go through this process again if I could help it. So had bmx with immediate reconstruction - 6.5 hour op and was VERY sick after it for 3 days - yuck!  Post op pathology said PILC/LCIS (was very glad I had had the mastectomy then) and my surgeon got very 'nervous' about plemorphic (not a nice feeling to know your surgeon is nervous I can tell you!) and got me an appointment the next week (very fast when the normal wait to see an onc is 12 weeks) to see the top BC specialist onc in NZ - I was past nervous by this stage - absolute dread would maybe come close!  Onc, bless his heart, said that being plemorphic only matters if the cancer is Grade 3 as they are invariably the more aggressive ones so that agrees with what the other ladies have said.  I am early grade 2 so I went from feeling like I was going to have a heart attack on the spot to feeling that I was going to faint from relief. He said I would only get a 1% benefit from chemo and it definitely was not worth suffering the side effects for that gain so I was more than happy to go along with that idea!  So it is Femara for 5 years and I am living with its side effects daily.  Done everything I can to make the 88% chance of living to a ripe old age he gave me happen so fingers crossed it does.

Rae

sueinfl

Welcome Rae and yahoo for your early detection. I am beginning to believe that PILC gets its bad rep from the fact that it is so often overlooked until well advanced. For the life of me, I cannot understand why the recommendation for monthly self-exams has been dropped. It is the only thing that give us with PILC a fighting chance, especially since mammos rarely pick it up.

Sue

suzieq60

Welcome Rae,

I'm a kiwi too but transplanted to Oz when I was a child. I'm still fiercely patriotic to NZ though. Lucky you weren't HER2 over there after all I've read about the fight to get herceptin for early bc patients.

Sue

raeinnz

Hi Sue and NZ Sue - nice to 'meet' you both.

Yes, there has been great debate over Herceptin. I think it is sorted now which will be a great relief for those who need it. The absolute last thing one needs at a time like this is to have to fight for life saving drugs!

My onc said that with BC early detection is the key to saving lives and ideally everyone should have annual mammograms. In NZ we are advised to do monthly SE and we have a government funded scheme, which is widely advertised on TV and newspapers, where women aged 45-70 can have a free mammogram every second year. This has increased the number of reported cases but lowered the severity at detection so it is working.   Can you believe that the problem is getting women to actually take advantage of the scheme? - even when it is free!!  The problem with ILC and PILC as you say is that it is so hard to detect by SE (even the surgeon couldn't feel mine) or by mammogram, until it is big.  But it is visible with US.  However, because IDC is easily detected by mammogram and because ILC are such a small percentage of the total number of BC cases, it will be a long time before there is a recommendation for annual US instead of mammogram I think.  Here a mammogram and a US cost about the same so I hope one day someone will have a light bulb moment and the recommendation will be to have routine US instead of mammogram. Guess it will depend on having enough US machines and trained staff to do the job though.

Rae

suzieq60

Rae,

In Australia we have free mammograms every year. That was how mine was found - on my birthday!!! I was lucky it showed up so small. You couldn't feel it and the surgeon needed a wire inserted under ultrasound to make sure he got it. As you said in another thread, only 1% of patients are PILC, well I'm in the 1% of that 1% who are HER2 as well - crap.

Sue

raeinnz

Hello ladies

Most fantastic Autumn day - warm with a slight breeze and the sky is so clear and blue.  My 18 year old is playing very loud music in the next room and DH is making fix it noises in the garage so the peace and tranquility of the day are somewhat diminished but I am grateful I am here to enjoy it.

Sue, you are just super super special!  Am interested to know if your doctors are more interested in your case because you have such a rare form?  My BC specialist onc was very blaze about the PILC although that was why I had been referred to him.  You wouldn't think he would see many cases as we have such a small population.

Rae

suzieq60

Rae,

I've dumped the original surgeon because of his manner - didn't like him at all - he never discussed the pathology with me in that I didn't know it was pleomorphic until much later. That was quite embarassing when they called today to confirm my appointment for Monday - I totally forgot I had it. I told her I wasn't coming back and she asked why. I just said I preferred someone closer to home which is bullshit really because it's not that far to go and see him anyway. I now have a female surgeon who has agreed to take me on. It will require close watching and she has agreed for me to have an MRI in October because I'm worried about the other boob. My oncologist didn't seem phased by the diagnosis. The HER2 element takes over from the pleomorphic lobular thing.  He just said the fact I was triple positive was good as there are drugs to target each element. We know him well as my husband has been his patient for 7 years. I totally trust him.

Where in NZ are you? I was born in Devonport, but Dad's family came from Whakatane. I live in Brisbane now, but desperately want to jump the ditch and go home. I didn't go back for 39 years and now I can't get enough of it. After all this treatment is over, I'm going to try and get a transfer to Auckland with my work for 6 months to see if we like living over there.

Sue

raeinnz

Sue

Lol about the appointment - that would have caught you on the hop.  Good on you for changing doctors though!  Doctors have our lives in their hands and we definitely need to feel 'safe' under their care. Little choice in BC/plastic surgeons here though and only one that everyone recommends.  He was inclined to offer only minimal information too and when I first went to see him he had already decided I was going to have a lumpectomy then rads and had booked surgery for the following week!  Hello! - I will decided thanks.  I have thought about this quite a bit as I felt, like you, that he should have offered more options and info and that I shouldn't have had to go to the net to find out important and indepth info re my treatment. All I have come up with is that a lot of ladies would no doubt be in such a distressed state that they would be happy to go along with what the surgeon says and so the doctors adopt the leading role.  Also maybe some of us (the ladies who join this site for example) are more inclined to be proactive regarding their own health and so we have higher expectations of the medical professionals.  I asked for all the test, pathology and surgery reports which he happily handed over and he took time to answer questions I asked so eventually we knew where we both stood and we have got on very well ever since.  Hope you can build a better relationship with the new lady.

I live 15 minutes out of central Tauranga in a semi country area with sea and land views. I moved to Tauranga for a two year job in 1979 and have never left! - absolutely gorgeous place to live.

Rae

suzieq60

Hi Rae,

Two of my cousins live in Tauranga - Blanche and Vivian. Blanche had bc a few years ago and went to Waikato for treatment. Their Mum (my Dad's sister) died from BC when she was only 49.

I knew when I met the surgeon I didn't like him, but when it's a Thursday and he is willing to operate on the next Wednesday, you don't go running out the door. I wish I had though. He is technically respected but his manner was another issue. Although when I met the new one, she asked who had put my port in - guess who. She probably noticed how long the scar is.

When we went back for the post surgery check, my husband asked him the dimensions of the tumour - he had a go at Steve and said it was 11mm and if we didn't like what he said we could go elsewhere. As it turned out it was 11 x 6 x 7 which we found out when I got hold of the pathology report. Why couldn't he have just told us the size seeing he had the bloody report there. He also had a go at me because I had already made an oncologist appt before I went back to see him - WTF? If I hadn't already known a trusted onc, then I would have waited until I saw him. I figured the earlier I made an appt the quicker I get in to see him.

Are you south of Tauranga? One of my Aunties used to live in Te Puke and when I was there we drove up to see the cousins.

Anyway, I'm jealous of where you live. After all of this is over, I really need to make an effort to see what we can do about moving. It's a bit hard as I'm a software engineer and jobs aren't available just anywhere.

Sue

raeinnz

Hi Sue

So you have a bit of family history of BC then?  Can you get the BRAC test over there?  They have tightened up on it over here and you have to have a referral from your specialist and a big family history to qualify.  I have nothing on my mum's and no sisters, Dad's sister died of uterine/ovarian cancer at about 45 but her two daughters are ok as was Dad's mum but her only sister died of BC and Dad died of cancer a couple of years ago.  Not enough female history to qualify but I feel there is a weakness there and I am concerned as I have three daughters and would like to know for their sake.  Can't even pay for the test - very frustrating!

That surgeon sounds like a man who has too high an opinion of himself!

We are just North of Tauranga on the road to Katikati, Waihi.  My friend and I joke 'where are you going to live when you retire?'  We haven't come up with a better place yet?

11.40pm so I am going to bed - doesn't mean I am going to sleep though - this Femara is pretty good at ruining a good night's sleep - but at least I will be resting.

Rae

suzieq60

Rae,

I can't sleep either.

 I have another cousin who lives in Waihi. I've been through KatiKati on my way to see her. Yes, I have a lot of cousins (21).

My father's family (3 of them) have all died from cancer including him at only 65. His father also died of cancer. Only one of the aunts died of old age last year at 84. One of my surviving uncles has prostate cancer but is responding well to hormone treatment.

My onc did not recommend the BRCA test - he says it's not accurate enough yet - maybe in 5 years. I have a daughter too and did worry.

Sue

raeinnz

Sue - Crickey, you do have a family history!  Slept better last night as it was cooler - only woke 2 times instead of the usual 4 or 5!  Will I ever sleep through again?????

I used to run 8kms a day before BC and I was trim, toned and fit as a fiddle but joints and tendons are too sore for that now so I have been walking but I am not trim or toned or fit anymore   Decided I had to do something about it so my hubby has ressurected bikes and my 18 year old daughter and I went for a 5km bike ride yesterday and we did 10kms today (is pretty hilly round here so a good work out) but our poor butts are so SORE now!  I should have gone at my own speed too but I didn't - I tried to keep up with her - am worried about not being able to get out of bed in the morning now!!!!

Hoping all is well with you all

Rae

suzieq60

Rae,

 I have a brand new bike just sitting there. Not ready to get on it yet. We are relatively close to a long bike track but getting back home has a bit of a hill and I'm not ready for that yet. The chemo is still having an effect - sore joints and muscles, I can barely walk. Can't even stand up for long. Time will fix it I hope.

My onc said that father's side cancer can be just as relevant as mother's side. I've decided not to worry about it though.

Sue

raeinnz

Sue

Sorry to hear you are suffering from the chemo. Whilst the drugs save lives there are so many terrible stories about SE and the after effects.  A young (26 at the time) teacher at my school was dx leukemia 3 years ago and had immense quantities of chemo for a year and then a year of pretty hefty maintanence oral chemo.  She is ok physically but is left with terrible 'chemo brain'.  She likens it to ADHD - can't remember to do things and has to write lists to get through the day, feels like she can't sit still for any length of time or she will explode - she says it is exhausting just getting through a day trying to keep herself under control.  Her doctors say it should get better with time but she is terrified it won't.  Hope your symptoms disappear soon and you are able to get out on your bike - being able to get out in the fresh air and open spaces is just SO soul restoring.

Brand new bike sounds nice.  Ours are about 10 years old and have been languishing in our shed for the last 5 years or so, so they needed quite a bit of TLC to get them reliable again - my Handy Dan hubby did a good job though.

Better get on - I am a volunteer secretary for two clubs as well as working 3 days a week and with the start of the new school term things are revving up again.

Take care ladies - hope you are all well today.

Rae

suzieq60

Rae,

The bike is not exactly new, a bit over a year old, but seeing I haven't given it much use, you could call it new. Just swept and washed the floors of 3 rooms and I'm pooped. Obviously, I've got a fair way to go before I recover. And I've still got the tiredness from the radiation to come - I've only had 9 treatments so far.

Sue

raeinnz

Sue

Glad to see you are still fighting through the SEs though - slow and steady like the turtle is the way to go.  Fingers crossed you won't get any more tiredness from radiation!  Geez, I take my hat off to all you strong, strong ladies who have been through chemo and radiation - just the SEs from Femara have had me feeling life will never be the same again! This disease is all wrong - we feel quite well and healthy when we have this growing in us and then the cure makes us sick as a dog.

Went for 12 km ride today - butt still sore but I think I might be getting a bit fitter even after 3 days. Tess wants to do an extra 4 kms tomorrow - ugh!  We stopped off and had a feed of feijoas off a tree on the side of the road on the way back - yum!  We got some strange looks but what the heck - enjoy life while you can and they were free!!!

Rae

suzieq60

Rae,

You won't believe it but the bs I had, called this afternoon to find out why I had cancelled my appt. What could I say - you're a prick. I just said I preferred someone closer to home. He is really nice on the phone I didn't want to get into an argument. Talk about embarrasing - couldn't he just ask his woman what I said on the phone the other day.

Sue

raeinnz

Sue - ROFL!!!!  Sounds like you handled it with aplomb though! Thanks for starting my day off with a laugh - it is looking much brighter now, unlike the weather!

First day back at work after holidays today and things are not looking good for a pleasant day as rain is threatening. My library has two levels and the whole school it seems becomes rain refugees at lunchtime and CHAOS reigns as I can't be in two places at once - get lots of exercise running up and down the stairs to quell the bedlam though! 

Enjoy your day ladies

Rae

suzieq60

Rae, glad I gave you a laugh. Have fun back at work. I am so bored it's not funny. Hope to go back sometime late June.

Sue

pamela42

Just diagnoised with this sub type of cancer seems pretty grim. What do I need to be made aware of? Any suggestions?

Anything would be appreicated

thanks, pam

raeinnz

Welcome Pam - this is the place for info.

Normal ILC cells are similiar in shape and size and the nucleui are round and small.  Pleomorphic means that the nucleus (the middle bit of the cell) and the cytoplasm (rest of the cell outside the nucleus) have differing shapes and sizes. The PILC cells follow the same growth pattern as ILC though ie one following the other like 'Indians', spreading out to form a flattish tumour that is more like a thickening of the tissue rather than a hard lump like ductal cancer produces.  This is why ILC tumours are more often bigger when they are found as they are harder to detect by touch and they are often missed by mammography until they are quite large. Mine was 2cm at its largest and even my surgeon couldn't feel it before surgery.  I live in NZ in a smaller city and when my post surgery path report came back my surgeon was 'concerned' about the pleomorphic status - he hadn't had one before - and sent me to a specialist breast cancer onc in another city.  I was freaked out! but the onc said being pleomorphic is not significant until Grade 3 and/or Stage 3 up when the cells become really abnormal and fast growing and don't respond so well to drug therapy. I remember one lady saying earlier on in this thread that she was beginning to think that PILC may have such a bad name because ILC is so often caught at much later stages than IDC, when the pleomorphism starts to be significant.  So, if your cancer is Grade 0,1 or 2 and early stage 0,1 or 2, the general agreement seems to be that pleomorphism is not of major concern - it is just one more of many factors that your onc will consider when he is deciding on treatment. 

More important is the ILC diagnosis I think.  Because of the way it grows, this is a sneaky little beast and getting clear margins after lumpectomy surgery has a 60% failure rate and some ladies end up having two re-excisions or eventually have to have a mastectomy anyway. ILC also has a high recurrance rate in the same breast and a 3 times higher occurance rate in the other breast than IDC ie 24%chance of it occuring in the other breast.  I was 52 at time of dx and decided my chances of having to go through all this again were high and I didn't want to do this all again so I decided, against my surgeons considered opinion, to have bilat mastectomies. Although it was a big op - I had immediate recon as well so it was a 6.5 hours op - and a 6 week recovery, the BMX saved me from 6 weeks of radiation which always follows lumpectomy over here, means I don't have to have 6 monthly mammograms, means I have dropped my chances of getting breast cancer again by 90% and it means I can live life with some peace of mind.  We all have to make our own decisions but I would say read all you can and try to make a decision that you can live with rather than one you think will be an easier option.

Best wishes as you work your way through your decisions.

Rae

AnacortesGirl

Gitane -

Haven't seen you on the boards lately.  Hopefully all is well with you.  I would also like to ask you if I can join your group (I know you don't "own" it but you definitely started something!).  Seems that after all the dust has settled from my trial and surgery that my path report shows pleomorphic.  Like others, I haven't found anything new in my searches.  Just the dire prognosis.  Especially for grade 3 cancers like mine.  Any updates that you may have found would be much appreciated.