The most normal spread of ILC? % recurrence in other breast?

Lily55

Hi Deanna - they said they only offer one type of recon and I lack enough tissue and also thst I am too damaged by rads (quote from surgeon "I can´t do anything with that its far too burnt") - I am having physio as have scar tissue stuck to muscle affecting my shoulder and arm movement and using seven cream so hope to improve that but I still lack the tissue......its all so exhausting

dlb823

I'm so sorry you're going through that.  Let's just hope that such aggressive treatment did the job in ridding you of bc.  And hopefully you can regain your range of motion with physical therapy.

Lily, my plastic surgeon and others at UCLA (Los Angeles) are absolute miracle workers, rebuilding faces for severely injured soldiers (who have often been burned along with other injuries) with a project called Operation Mend.  And I know there's a fabulous center in New Orleans (NOLA) where they are equally as talented at difficult reconstructions.  Perhaps you could set a goal to at least get an opinion from someone of that caliber after your physical therapy?  It's just a thought, and I would be happy to put you in touch with my PS, so that you could at least email him some photos, if you're interested.     (((Hugs)))  Deanna

Anonymous

Wow...this thread has done a number on my psyche.  I was holding onto the belief that ILC had a bit of a better prognosis than IDC. That little bit of psychological positivity kept me going after my dx Sept 11, when I found out after my lumpectomy I had 6 positive nodes, through chemo, rads, and recovery from it all; now tamoxifen for ten years.  Now I find out through this thread and others that ILC is less likely to respond to chemo and (reading the links included in previous thread responses) that ILC is at best prognosis equal to IDC. I also read on another link on BCO.org that ILC seems not to respond as well to taxoxifen....and that it's more difficult to get clear margins with lumpectomies with ILC..so I question my "close but clear margin" status now.  I'm scheduled for a bmx/recon late spring. Hopefully I haven't waited too long for that tx--but surgeons said I had to allow skin recovery from rads.

Damn. It seems ILC isn't as tx-able as I once thought--and gave hope to my loved ones for my survival, too.

I'm feeling a lot less hopeful after what I've read here the last few days. 

Claire in AZ

Lily55

I don´t know where you read the bit about tamoxifen as my understanding is ILC is nearly always hormone positive and that hormone treatment is very effective........I am on letrozole but worried about the bone density issue

dlb823

Claire, I've just PM'd you.

dlb823

And here are a couple of research articles I've just pulled up on ILC that should be reassuring:

http://jco.ascopubs.org/content/26/18/3006.long   (An excellent, in-depth explanation of the differences, including pointing out that ILC is perhaps more problematic when it's also ER-.)

http://www.ncbi.nlm.nih.gov/pubmed/17760669    ("There was no prognostic difference between IDC and ILC.")

Unfortunately, sometimes both good information and bad can be misunderstood and/or grossly exaggerated as it's repeated. 

Deanna

BettyBoo

Claire, don't be disheartened! A lot of the studies like the one Deanna cited are from data collected in the early to late 90's & early 00's and treatment has advanced in the last 10 years so you could assume outcomes are much better now and will continue to improve I am sure!

BettyBoo

Deanna, sounds like you have a fantastic medical team. I have been discharged from all follow up but I have open access. My BS just said if I have any concerns I can be seen very quickly. His take is as I was node negative my prognosis is excellent and doesn't warrant formal follow up. I agree wholeheartedly what you said about recovering after treatment. It does take time and you have to be kind to yourself.

momand2kids

all

just back from y 6 month onc visit- my onc is at Dana Farber and is a researcher as well as a great oncologist.  In her opinion, ILC responds well to hormonal therapy--she told me this at the very beginning.... when I was looking at gray oncotype results.

She  reminded me that everything we knew in 2008 dictated the treatment and in her opinion, that treatment would not change today.  She was at the December conference and had some good insight on some of the studies.

For now, she is not convinced that being on an AI (which I am) for more than 5 years offers any benefit.... but she is reserving judgement.  She has never believed that ILC would recur in my other breast.

I think the research is always really interesting and I like talking to her about it, but I also think we all have to make the best choices we can at the time with the information available.

By way of comparison, I had a friend who was diagnosed about 6 years before me-- IDC.  She had a mastectomy and did 5 years of tamoxifen.  When I was diagnosed and told her about the oncotype, she was astounded.  there had been no such thing for her and she started to worry about whether or not she should have had chemo.  She is just fine..but it was so stressful to her, but the fact is, when she was diagnosed, the oncotype was not widely used.  and there will be other things like that for all of us....

When I see my onc, I re-make peace with  myself about the choices I made..... gets me to the next visit (and I only have 2 more!!!)

Momine

Lily, you can help protect your bones by exercising and taking D, calcium and magnesium. Yoga, pilates, weight training are all good bone-protecting exercise, but even fast walking is helpful.

Momine

Claire, are you very young? I ask because of the ten years of tamox. That sounds like the doc doesn't expect you to hit menopause for at least another ten years.

If you are menopausal or become so, you can switch to an AI. 

Lily55

I am taking vitamin D3, occasional magnesium but not calcium and I exercise regularly (Zumba at least 3 times per week) - what is the recommended balance of magnesium-calcium for us with BC please?

It really is very helpful to have a section just for ILC people, thank you for all your replies and info

Anonymous

Hi ladies,

I was traveling but happy to come back and read these posts. Thank you for trying to help me. Deanna, the links are helpful, thank you. I'll write PM to you soon.

I did have ACT--AC DD and 12 weeklies of taxol--I think my oncologist gave me everything and the kitchen sink,which was what I asked for.

Momine, last month there was a recommendation released at the San Antonio BC Conference that said 10 years of tamox was better than five....higher survival rates. My onc. (whom I trust thank god) attends all these conferences and shared it with me at my 9 month check up in late December. Since I'm highly ER/PR+ she and I agreed I should be on the 10 year plan.  Since tamox so far has given me no problems, I'm happy to take it as long as she says.

http://www.vancouversun.com/health/Taking+tamoxifen+years+instead+cuts+breast+cancer+relapses+deaths+Study/7655577/story.html

I'm trying to be proactive about my health: mostly vegan, low sugar, low grain, all organic (nearly all), bikram yoga 3x a week (the heat is supposed to be beneficial for tumor suppression, just in case there's something lurking--and I've been bikraming for 6 years anyway, and love it), weight lifting, walking/hiking every day.  I take a myriad of supplements: Vit D (levels tested and fine), curcumin, co Q 10, lysine, Vit C, Vit B, aspirin daily (I have to be careful not to take anything that might interfere with my tamox).

Momine, the tamox and ILC reference from my last post came from this thread, where there were articles saying that ILC seems to have a higher rate of tamox resistence than IDC:  http://community.breastcancer.org/forum/71/topic/736352

Funny how we reassure ourselves in the midst of crisis. I know the percentage points for survival that I read about w/ILC vs. IDC were infinitismal, yet I hung on to those points with my life (literally).  

Ladies, thank you.  Love you all for your encouragement and educated discussions.

Anonymous

I should add that I drink very little alcohol, and have decided to avoid it altogether starting this year. ILC and alcohol don't mix, it seems.

Lily55

ILC and alcohol don´t mix.......any references on that to look up please..........I was told red wine and one glass of beer (not on the same day) were fine so why is lobular cancer worse for alcohol?  Because alcohol can increase oestrogen levels?

dlb823

Lily, here's a recap of a 2010 study that makes the distinction between alcohol use with IDC vs. ILC: http://www.medpagetoday.com/HematologyOncology/BreastCancer/21853   Perhaps Claire has another one.

This was a restrospective study -- in other words, they extracted data from previous studies, which some would argue may not make it as accurate as one designed specifically to determine this information.  But it's absolutely influenced my habits, which have gone from an occasional glass of wine to maybe 1 every 6 mos.  But like everything else, we each have to decide what changes we feel are most important for us, and that we can live with and not feel overly deprived or miserable, which isn't good for our mental health!  

And here's another bit of research I just pulled up on the subject of alcohol & breast cancer that makes a distinction between pre & post menopausal women:  http://www.medscape.com/viewarticle/727885

Deanna

Lily55

THanks DEanna - it seems that being overweight and drinking alcohol is a bigger risk......fpr those interested here is an extract from the Medscape article

We found that alcohol negatively affects the prognosis of all women diagnosed with early-stage invasive breast cancer who consume at least 3 or 4 drinks per week, compared with women who did not consume any alcohol," she told Medscape Medical News.

The associations appeared stronger in overweight and/or postmenopausal women, which perhaps indicates that women in these subgroups are more susceptible to the effects of alcohol, she noted.

"Alcohol has been shown to increase estrogen metabolism and circulating estrogen levels in postmenopausal women, while being obese can also increase circulating sex hormones and insulin levels," Dr. Kwan explained. "In general, an overabundance of estrogen production can lead to breast cell proliferation and possible carcinogenic events in the breast tissue."

There was no association between alcohol intake and all-cause death. The authors note, however, that alcohol intake was possibly associated with a decreased risk for nonbreast cancer death, which would be consistent with current literature on "alcohol's likely protective effects on cardiovascular-related outcomes."

Anonymous

They way I understand the ILC/alcohol thing in plain english--ILC is driven by estrogen, more than other subsets of BC.  Alcohol increases our estrogen levels.  Estrogen is stored in fat cells.  BC cells can stored estrogen and grow. Why give those possible cells more fuel for the gas tank?  Like Deanna, I have sworn off alcohol for the most part. If I have a recurrence, I don't want to hate myself because I couldn't keep my alcohol intake at a minimum.  I've also found that the less I drink, the easier it is to keep weight off, another plus.  

My MO told me late last year that three glasses of red (not white) wine per week (and not all at once) would be safe, as there is some evidence that occasional red wine can protect against BC.  But I think it's what's in the wine, which you can get from grape juice also, that is helpful, not the wine itself.  

Anyway. Here's the latest in a long argument about whether we should or shouldn't drink.  And keep in mind that these studies don't seem to isolate our kind of BC from the most common one, IDC, which makes a big difference as to what we choose to do and not do to protect ourselves.  We are a different sub-set.

http://www.theatlantic.com/health/archive/2012/01/the-truth-about-breast-cancer-and-drinking-red-wine-or-any-alcohol/251171/

Claire

pari143

Dear lily

            i know its very hard for every BC victim when she thinks about recurrence.my own mother is Dix with ILC it was like a nightmare when my sis send me the reports .let me tell you that i am living in a third world country where you cant even think about the new drugs and treatments. OX in here gives the old and conventional type of treatments to the patients even in here i know many woman who survived with or with out recurrences more then 22 years, So pls take a deep  breath this sneaky cancer came from ur inside and its you who can defeatt this with ur will power .Eat healthy foods veg's and fruits maintain a healthy weight and try to leave stress behind you .I appreciate all of u BC warriors for ur courage and bravery. prays and hugs 4 you

mtks

Hi_ just seeking out if there is anyone who is experiencing neurological symptoms (sharp prickly type pain, tingly and numbness. All has happened in my scalp,feet, leg, fingers, shoulder blade.? I also have pain in my left shoulder blade at times and under my left clavical that comes on by its own. When pressing on the area it has stronger pain..? My oc said dont touch area and try to forget about everything. He said I "detected my ILC early" Quit thinking!!  But its hard when you feel this EVERYDAY! Am I over acting? Anybody?

Lily55

What kind of surgery did you have? This could all be sciatic type pain....

Anonymous

Over-reacting?  Ha.  I worry, at times, about every ache and pain.  My right fingers seem to fall asleep (tingle) a lot more now...that is the side I had my lumpectomy and rads on.  Luckily it doesn't last because it happens only when I sleep on that side, and corrects pretty quickly when I roll over. 

Right now I have some intermittent hip pain that I'll have to mention to my MO tomorrow. I'm afraid to, and I think it's simply overuse (it happened all at once when I was at the gym last Tuesday, running and lifting weights) and only hurts when I walk on it so it's most likely bursitis or tendonitis...I think bone mets are different--pain lasts no matter what you do, and it feels "different". This is a sharp pain that happens when I step down on that side. But you see where my mind headed immediately after I felt it.

You are normal. I think it takes years to leave behind the hypersensitivity about our bodies and their messages, at least for most of us post BCers.

Claire

mtks

The last surgery I had was for my areolas (sp)and that's been over a year ago. I do have a small cyst in my pineal gland that they are monitoring. It showed up on a MRI. Radiologist rec. a MRI in 6 months and it showed it had increased in size somewhat. Which brought another rec. for 6 month followup with MRI which by the way- it's been almost a year.

rosie06ct

I was stage iv ilc from the beginning , in my bones like 7 places...  and in lymph nodes up to my neck... er/pr +

had no surgery as was stage iv... been on Femara (generic) almost two years , ned about a year and a half .. now my tumor markers were 34, last month shot up to 70 and this month 121.9  !!!  ONC did not feel anything on exam and I dont have any pains etc.. scheduled for PET scan next Friday  scared to death all over again.

I am overweight and lost 19 lbs but now 6 months later I gained it back .... onc said lets see whats going on with pet and maybe switch to Arimedix ..  I just dunno... 

Momine

Rosie, I am sorry you are going through another scare.