Invasive lobular gr 2.. best treatments?.

Question

Hi I am getting mixed msgs from my breast surgeon.

At the beginning of all this I was told I was unlikely to need radio or chemo. Then it changed to prob need radio. Then it changed again to radio not as necessary but I may need a short course of chemo. Then today when I saw her replacement (she is now on mat leave), he said that if I were his wife or sister he would want me to do both!! Oh and on top of all this I am told that invasive lobular is most responsive to hormone suppression (which I haven’t been offered yet and is in the pipeline for after treatment.. thinking it should be sooner?...)

I now have my pathology and turns out I have gr2 invasive lobular er+ and moderately prog+ but her-. Tumour was cleared with clear margins but was close to chest wall (hence considering radio). Was 4.8mm and only found in 1 sentinel node .8mm. I was told chemo is recommended for tumours over 5mm and in 3 nodes... so I am borderline..

Surgery so far has been sentinel node biopsies followed by double mx with skin sparing and direct to implant. Right nipple was taken but found to be cancer free (I feel a little ripped off about it) and left breast tissue was completely clear of cancer, but dense tissue so hard to screen.

My concern is that I have had all cancer chopped out as far as anyone knows and that they are recommending the works because I am 40 and in good health. I want to stay in good health and am concerned about the impact of unnecessary treatment. I have also been told that invasive lobular doesn’t respond particularly well to chemo anyway...

To confuse matters further another surgeon who looked at my results but doesn’t know me (he treated my mum) said that radio is unwarranted but that I should have chemo...

Has anyone else had similar issues?

sister · Answer

I should say that my onc was happy to use the predict tool if I really wanted him to but he said for ILC it was misleading. I think this is because ILC is often found when it is more advanced than ductal as it is so sneaky.

In addition to the extra 5% statistic I was given, I also figure that the longer I'm around and the slower any possible progression, the better chance I have of being able to take advantage of future advances in treatment.

sister · Answer

@lemonade I've had a similar diagnosis: ILC OR+ PR+ HER-, very slow-growing. Originally thought to be 2.5cm with no nodes and undertook wide incision and sentinel node biopsy. Surgery and following path report showed 4.5cm without clear margins and 3 nodes involved so went back for full mastectomy and axillary dissection (8 nodes taken altogether without further involvement). My surgeon is also Jim Kollias in Adelaide who has co-ordinated my treatment so far and I have complete confidence in him. Originally, I was told that rads were almost certain, hormone therapy a given, but that chemo might not be necessary. That changed with the node involvement. My onc is Tony Michele at Adelaide Oncology at Calvary. One of the things I keep getting told by each specialist is that at 54, I am considered "young". And for that reason, given that breast cancer is still very much something that is treated with very blunt instruments, the statistics show that my long-term survival chances are increased by 5% with chemo. I can't say that I'm thrilled about having chemo (and if that blood test to check for floating cancer cells was available now, and reliable, it might show that I do not need it) but I'm determined to be here as healthy as possible for as long as I can. Jim Kollias is reasonably sure that I am cancer free from surgery but cancer is a sneaky beast and I don't want to find out 5 years down the track that some rogue cells got away. So, I have had 1 AC so far, 3 to go, then 12 taxol treatment. Then I go for 15 days of rads at RAH (doing that public). Then I get to discuss hormones. I'm not sure how the HER status affects treatment - I think it's just the type of hormone therapy but I'm sure someone else can provide info on that. By the way, my onc also said that with ILC, the predictive tools will give unreliable results. They're all mostly based on ductal carcinoma stats and ILC behaves very differently.

And if you're wondering about whether 5% stats are worth it to you, I read a post (here?) that someone wrote about imagining people in a room, a number getting a reprieve because they've had treatment, and imagining you're one of the ones left. I'm explaining this very badly (5am and I've been awake since 3am) but maybe someone else may have seen it and can explain better.

Hope this helps.

zoffiel · Answer

@lemonade To chemo or not to chemo. It's a dilemma.

There should have been a multi-disciplinary team meeting to discuss your case at some point. That's probably the document you need to chase down. There would have been a med onc and a rad onc involved. It would be helpful to see what they had to say about you.

Most commonly they use the Predict tool to assess your chances of responding to a variety of treatments--surgery, chemotherapy, radiotherapy and some form of hormone therapy. The stats that come out of that are often not helpful. 5-7% increases in survival rate after putting yourself in the blender and having chemo are common. Not terribly motivating.

Getting conflicting messages makes it worse. I don't know about you, but I prefer to see the science. It doesn't change the situation, but it gives you a better idea about what you might do about it. It would probably also be helpful if surgeons confined themselves to commenting on their field of expertise. Mine was completely off the mark and it has pissed me off no end that he didn't just do what he is trained to do and leave the rest alone.

I had invasive lobular in 2006. A whopping tumour (55mm) but nothing in the sentinel node. I was 43. I ended up having AC chemo then double MX with implant recon. No radio therapy as I couldn't afford it (that's a whole other story about living in the sticks)

I marched through AC with very few problems--worked right through-- and then was on tamoxifen for 5 years, once again no issues. So, the treatment is not always as bad as you think it will be.

The problem is lobular BC is a sneaky bastard. I remember one GP saying, 'Oh, you don't want that one." As if I wanted any of it... Mine did come back in 2016, in my armpit of all places FFS, so I've had to make all the decisions again. Phhft.

Something that is often not considered is the pressure from people around you to 'do everything you can.' For me, that pressure was the tipping point to have more chemo, TC this time. I regret it in one way as it has been one chemo too many for my poor body. But, and it is the big but, I won't be hearing anything like 'It's a pity you didn't' later if and when it reappears somewhere else.

Rads isn't that bad. Very time consuming and it makes you tired and sore, but, once again, it ticks all the boxes so there are no regrets later.

Get to the bottom of it and talk to a medical oncologist. Their training pushes them towards poisoning you, but it's interesting to hear why they do, or do not, recommend chemo. Good luck. Marg xx

romla · Answer

All of my treatment was done in the private system.I understand you can elect to do Radiotherapy in the public system with no out of pocket expenses and treatment is the same.My 16 rounds of private Rads had $2000 out of pocket not covered by insurance - &nbsp;if you have a lengthier treatment it can be very expensive.With the benefit of hindsight this is an issue worth considering.

lemonade · Answer

Thanks ladies. Helpful. I am at Austin in Melbourne and nagged sufficiently this morning such that I now have oncol and rads specialist appointments confirmed for next Wednesday. And I will do my best to go in with an open mind per advice of my new liaison nurse who arranged it for me... also so lucky to have this forum for advice and the comfort of knowing that there are other souls out there struggling with similar issues and getting through it. Pre bc I had no idea and obviously life before seems some distant fantasy land where everything was awesome but bogged down by everyday stresses I had no idea at all how awesome it really was. I feel silly and embarrassed these days about my past whinges or perceived stresses now that I am faced with some very real issues.

For those who have had chemo how did it go? I am a bit more prone to nausea in general life I.e. motion sickness, one too many wines (in the past..), childbirth, fentanyl after my recent mx, have all at some point made me vomit continuously to the point of dehydration...so the thought of chemo and potentially suffering from that for months (along with any other side effects) is terrifying. I have 3 children so putting them through months of a sick Mum is a concern too when I am so used to being the carer for my family. And finally very superficially and vanity wise I don’t want to age myself 10 years which I have seen happen to a couple of family members who have been through it..I know ultimately all that is better than dead but it is still a scary decision..

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Invasive lobular gr 2.. best treatments?.

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