ILC-Specific Questions in Making Treatment Decision
Comments
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I am curoious to know if radiation kills ILC cells as effectively as it kills IDC cells... and is the idea that chemo is less effective on ILC due to it being lower grade? Would that also be true of any low grade cancer regardless of type? such as a woman with grade 1 IDC, given neoadjuvant chemo: is she less likely to have a complete path response than someone with grade 3 IDC?
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It amazes me how doctors can have opposite opinions. I was told it is not true that those of us with lobular have a higher risk of getting bc in the other breast! I never heard that Radiotherapy doesn't work for lobular, and I would like to see a report from an expert stating this. I believe that in New Zealand we are treated specifically for Lobular, at least to the best of the Oncologists knowledge. I asked my Onc if AI's were better for Lobular and she said they were so I went onto Letrozole/Femara. Sadly I couldn't continue taking it because of the terrible side effects. I think there is a bit of scare mongering going on in this thread. I am open to other peoples opinions, but if you are going to say something that could be frightening to someone with lobular breast cancer, at least back it up with scientific evidence please?
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I cannot see that radiotherapy is any different for ductal or lobular - it destroys ALL cells, hence the side effects it leaves behind..........and lumpectomy and then radiotherapy is a recognised and accepted treatment for ILC............however it is well documented that chemo works best on fast growing cancers and lobular is a very indolent cáncer...........I did not have chemo as I refused it and that decision still feels right for me but I do struggle with and persevere with the AI´s as they seem to be the most effective for lobular cáncer......just about to start my third one after a lovely holiday when I felt a lot more normal........
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I am sorry that I stated that we are all being closely monitored. I just assumed that we are all under high surveillance. I am exactly 1 year post tx so I see my MO every 3 months. I had a diagnostic mammogram and ultrasound in April 2015 - 6 months after my tx ended. (Of course, that does not include my oophorectomy which was done in December 2014.) However, because I felt lumps and nothing was seen on my mammo and sono, I was able to advocate for myself so that I could have an MRI. The MRI that I had in May 2015 discovered 2 suspicious areas. One was biopsied and the other is being watched for 6 months. Therefore, I will have another diagnostic 3D mammogram, sonogram, and MRI in November 2015 because my suspicious area must be looked at with the MRI.
It seems to me that we should all be closely monitored but I am not a doctor. Also, I guess that it depends on many factors.
I was told by all of the doctors whom I saw that lumpectomy plus radiation had the same survival rate as mastectomy. It was the only thing that all of the doctors agreed upon regarding my tx.
Leslie:
I am so sorry that you will have to have chemo and more surgery after you just finished having your BMX. Good luck. I wish you the best for pain and side effect free tx.
Lily:
I am sorry that you continue to be in so much pain. I am taking anastrazole and I only have minor side effects. I am really lucky.
Thanks to everyone for all of your input and experience (sorry that you have to have the experience though).
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Life expectancy doesn't change getting the BMX. It just relieves the stress of mammos that might show we need another surgery. We really don't want to make ourselves sick worrying about all these possibilities. I told my daughter that I was freaking out to discover my body lotion has parabensin it. She said the freaking out was more likely to make me sick than the lotion
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Forgive any errors in grammar, as I had surgery yesterday. Pain isn't too bad and I'm waiting for my ride home
Lily55, I'm so sorry to hear about your chronic pain related to your MX. It may be interesting if we can survey techniques used and pain afterwards. Seems the DIEP flap girls have better results long-term. My pain was getting much lower a month after my mastectomy, but I went to a size C direct to implant. Don't think I could handle expanders. Sounds like your tissue was excessively damaged and I don't see any reconstruction in your stats.
Jojo9999, I'll look for some links when I'm doing better. I've read quite a few studies that state many chemo's and radiation don't work on ILC as well as IDC. Remember the likelihood that a MX can be in your future and you want the best skin possible. If you're on the smaller size, an MX is almost a given. I don't regret mine at all, but radiation would have prevented it.
And I had cancer in both breasts. JohnSmith had a good link to a study that talked about when ILC goes wild and the cellular differences between the two. I likely had it for years, but something triggered it. I remember feeling like my immune system was weak and had a sore throat constantly and felt like I had Fibromyalgia about a year ago. The cancer soon followed. Did that happen to anyone else?
And we can't even be sure what caused my ILC caused yours. The research is pitiful compared to IDC. That's why I urge people to go to major cancer research hospitals.
Leaving the hospital
will talk later.Leslie
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My pain is from radiotherapy as I was pain free post mx before then.....I desperately want reconstruction but it seems never ending wait on public system here, i ran out of money going private as got serious infection (fat transfer) .............I try not to think about it as instant depression results......
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Dear Leslie:I am glad that your surgery went well and that you are feeling ok. What surgery did you have to have? I hope that the pathology shows good results. I am wishing you a pain free and speedy recovery>
Dear Lily:
I am so sorry that you are in so much pain. Yes, cancer tx is very expensive. I just got a $750.00 bill yesterday from my surgery from the summer of 2014. I just keep borrowing money and living on credit which totally sucks. I am a single parent (no child support) and cancer was not part of my financial plan.
When I feel pain (infrequently), I cannot tell whether it is from my axillary lymph node/lumpectomy surgery, from the radiation, or from the hematoma (or all 3). I have a lot of questions for my RO when I see him in November. Also, I don't know whether the thickening that I feel is a normal side effect of radiation or whether it is from the hematoma. The films will show the true story. I will be so relieved when I have my MRI in a few weeks.
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Hi, all. I don't post much anymore, but this discussion is interesting, and I thought I'd jump in.
I was diagnosed with PILC in 2007 at age 38. Tumor board at my university/teaching/research hospital said they treat pleomorphic ILC the same as they treat a high grade IDC. They recommending bilat mast with reconstruction, but I opted for a lumpectomy instead, b/c I was taking care of my two small kids and dying Stage IV bc mom at the time and needed a quick recovery.
So, did the lump/rads (with a chest wall boost), chemo, Zometa (as a bone mets preventative), and was chugging along into year seven of Tamoxifen, when I was diagnosed with a local recurrence in the lumpectomy scar tissue. I was having annual MRIs b/c I had extensive PLCIS left over in the breast. Onc had wanted to stop the MRIs, so we'd compromised on every other year, and skipped last year's monitoring.
In May of this year I had a mastectomy with lat flap reconstruction. That surgery was horrendous and I've been left in chronic pain. I tried starting Zoladex/Aromosin in July, but had lots of side effects, which I couldn't handle on top of the feeling that I was being crushed to death 24/7, thanks to the surgery. I have a new onc, and he has me on a six month drug holiday from the OS/AI. I will try again in January, but I have a feeling I'm not going to be able to handle it, especially since I still feel so bad from the surgery. Also, for some reason the onc said he thinks I will continue to recur, even on HT, and that we will just have to keep switching drugs. That wasn't too encouraging.
Anyhow, I wanted to share my story, since I flunked every treatment they gave me so far as local control goes. I think my main issue is probably the PLCIS that was left over in the breast, and I should have had a mx right off the bat, but hindsight is 20/20. In 2007, the surgeon had said I'd probably recur in the chest wall due to tumor location, so that was part of my decision making process, and maybe it's good there was tissue for the cells to recur in. Who knows.
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Wow, Nash, that's quite a story. Sorry for all you have had to go through. It feels like some breasts are just primed to make cancer. I was first diagnosed with bilateral DCIS, then when I had my lumpectomies, they found a 5x6 cm LCIS and DCIS field with a 2.5 cm ILC in the middle of it, and some micromets to the axilla.
Now in chemical menopause, and Letrozole which is meant to be better for ILC according to a study this year, and starting into rads, with a plan for BMX in February, hoping that we will have blasted or removed any of those confused cells who think dysregulated is the way to go!! Interesting, my mom also had breast ca, premenopausal.
Wishing you less pain and some better days ahead.
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Thanks, zinny.
Regarding the study that said Femara is better for ILC, is Femara also better than other forms of AI (such as Aromasin), or is it just better than Tamoxifen?
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Dear Nash:
Why does your doctor think that your bc will recur again? That is scary on top of a very horrific history. Good luck.
Good luck to you Zinny.
Good luck to everyone else.
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What is this inhumane doctor basing his opinion on? Not good medicine to tell a patient that.
My understanding is they only say Letrozole as that was the drug that was tested Against tamox, no more significance than that, I personally think it includes any AI due to the way they work .....but I am no medic.......still not started anastrozole...........
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Hi, 614, I think the onc thinks I will recur again b/c I recurred locally once already. He didn't elaborate. However, he is not a fortune teller.
I'd fired the previous onc (the one who didn't want to do the MRIs any more), but I'd seen her right after the recurrence diagnosis, and she said the opposite--that she thought she could "cure" me and wanted to do more chemo, although she too said metastatic odds were high. The tie breaker was the surgeon who thought I was likely to go metastatic b/c of the local recurrence despite all the treatment.
So clearly it's all on par with voodoo medicine as far as I can tell. If the drs can't figure it out, how on earth can we??
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Thanks for the clarification, Lily55. That's what I was thinking--that it was a AI>tamoxifen thing, rather than one AI>another AI.
And, yes, I don't know why my onc would tell me this dismal news. The only purpose it's served is to upset my poor hubby.
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Nash - you are right, the study was vs Tamox only, not other AI's, didn't mean to suggest otherwise.
There is not point in someone spouting off about their predictions - forgot the filter?! Positivity wins.
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Zinny,
Your story breaks my heart. And it's so frustrating when Dr's don't test you timely, and you get a recurrence. Worse, is having no consideration for your feelings. I fire those Dr's too.
I'm new to this. My DX was 8 months ago. My father was dying too, although my Mom took care of him. My Dr. told me all sentinel nodes were negative, and my father let go, thinking I was cured. And he waited until my follow-up to tell me my node was positive, but with me that was good judgement. I needed a few weeks to heal physically and emotionally.
But one of the things I like the best is that he doesn't encourage catestrophesizing. That's wasting time you could spend living. It's horrible to have this disease, and mine was so extensive that I'm pretty sure it had time to move around. But I need to stay with what I know, and push when I feel I'm not being treated like all of us. But it can be a chronic disease and we still can have some quality-of-life. Maybe it needs chemo every 5-7 years.
Good luck with your treatment.
Leslie -
Dear Nash:I am so sorry that your Breast Surgeon told you that you may go metastatic and that the Medical Oncologist said that you may have a recurrence. That is awful. Nothing like adding stress and anxiety to your life. Good luck and hugs.
Dear Leslie:
I hope that you are feeling better from your surgery and that your tx is side effect free. Good luck and hugs.
I wish everyone well.
I just found out today that my cousin was diagnosed with breast cancer.
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Thank you everyone for your kind words and concern.
614--I'm sorry about your cousin. It's like the sh-- is contagious.
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Hi all,
Well, I just received the results of my axillary dissection last week, and I had 3 nodes with micromets, 4 total counting my sentinel node. So this bumps me up to stage III. My Onco recommended the typical TAC chemotherapy because of the number of nodes. If I had 3, they wouldn't.
I'm hesitant. Seems like more and more research doesn't support this course of action for ILC. And I've had 2 surgeries in a month - a bilateral mastectomy and axillary dissection, and don't feel good. I haven't had good full body or bone scans either, so I asked for them. They're scheduled for next week.
I'd like to get feedback as to what other's have or would do in similar circumstances. I don't feel an urgent need for chemo, and think being on Femara may be enough until they approve Faslodex or something like it for me.
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It's such a hard call. I had TC as I didn't want to find out down the road I had a recurrence and didn't do everything you could do to prevent it, but now have a neuropathy in my feet. Having watched my brother and Dad suffer with Mets and pass away in the last 2 years may have influenced my decision. I figure any SEs are better than the pain of bone cancer. So I'd do it again in a heartbeat
On the other hand one of my best friends had the same grade, stage and almost the same oNcotype. She said there wasn't enough evidence for her to do it
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Hi Leslie, have you had Oncotype DX test? My score was 22 and my MO didn't recommend chemo even with micromets in two nodes. These decisions are so difficult, good luck with deciding.
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Yes, my Oncotype was 15. That's one reason I'm hesitant. I also know this cancer lurks, waiting for an event to trigger - mine was taking HRT for years, then my Immune system took a nose drive about a year ago. I had positive markers for a Lupuslike condition, however I didn't want to take steroids or Humara.
A few months later this cancer took off. So I think managing it has more to do with being healthy, not weakening myself more with chemo.
I still appreciate hearing from others experience at this juncture.
Thanks! -
Leslie, I had 7 out of 14 nodes with cáncer in, and I refused chemo for many reasons including those you state, but also because ILC is so hormone responsive and I was 95% ER and 85% PR positive. I do not regret my decisión and would make the same one again three and a half years on.....of course Oncologists don´t like it but I have lived inside my own body a lot longer than they have known me...........I changed my diet, exercise and reduced stress and I think research will bear out my decisión one day......I know BC.org is a pro chemo website but personally I am not. It has its place in cáncer treatment but should not be the mainstay and automatic choice.
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Lilly55,
Thanks for responding. My profile is very similar to yours, and my gut level feeling is to avoid
Chemo and build my health back from this ordeal. If I have positive scans that changes, but I'll be eligible for endocrine meds, which are proven to work. Since I'm in a research facility who just received a huge grant for cancer research, I asked for a researcher who was willing to work with me for individualized ILC treatment.
My instincts say that chemo will harm my health. Latest research questions using the same treatment as ILC. And I have chronic pain issues already. I don't need more neuropathy or other pain. It's about quality of life, not getting a few more years ... If I'm lucky. -
There is some evidence that people who do not have chemo survive longer than those who do, but I honestly think that successful treatment and approaches to beat cancer are individualised ones as every cancer and immune system is different and cancer stats are very generalised, and it sound like we both have a strong intuitive sense we trust.....
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Dear Nash:Thank you.
Dear Leslie:
I am so sorry about your results. I have always learned for myself that I should trust my gut instincts. Whenever I do not listen to my intuition, I am sorry. However, I do not have any advice for you regarding chemo because I am not informed enough to recommend anything. If I were in your shoes, I would ask many questions of my doctor and I would also go for a second and possibly a third opinion. I would make my decision based on what the doctors recommend. Doctors are trained in this area and I am not. I hope that you recover quickly and that you are able to feel good about your decision.
One thing that I have heard is that if you do have chemo, you should put your hands and feet in ice during the entire chemo infusion and during every chemo treatment. The ice helps to stop neuropathy from occurring.
Good luck with what ever treatment you decide to do. I am sending you hugs and much good luck.
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John, have you read much about the POSEIDON trial?
http://www.ratherproject.com/news.php
large pan-European clinical trial (POSEIDON) into a novel targeted study drug (called taselisib or GDC-0032) for breast cancer was announced today by the collaborative RATHER project funded by the European Commission. The POSEIDON clinical trial centres, based in the Netherlands Cancer Institute (Amsterdam), Cambridge Cancer Centre (UK), and the Vall d'Hebron Hospital (Barcelona, Spain), began to study patients treated with this investigational drug in December 2014.
Breast cancer is the most frequently diagnosed cancer in women, accounting for one quarter of all female cancers, and is the second leading cause of death from cancer. The RATHER project focuses on finding new drug targets for two types of breast cancer – invasive lobular carcinoma (ILC), an aggressive cancer that does not respond well to current treatments, and triple negative breast cancer which lacks the oestrogen, progesterone and HER2 receptors- common and effective drug targets in other types of breast cancer. These cancers account for one quarter of all breast cancers, and have a very poor prognosis.
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ILC an "aggressive cancer"? Since when? Harder to treat?
All this info alarms me and does not coincide with my prior knowledge and info given by other Oncologists. How do people get on these trials?
I live in Spain so could contact Barcelona.
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I have read nothing about aggressive. Just that it lurks to n shadows and is harder to detect. Also slow growing so if recur fe is later ihappens we are off AI meds that keep it at bay
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