stage 4 breast cancer if i don't do chemo

Hi, I hear your frustration and fear in your post. I can't tell you what to do and what treatment you should choose, but can you schedule a second opinion with another MO right away and see if you find better alternatives or at least confirmation that your first MO has suggested the best tx for you? I found it helpful to get a second opinion to confirm my MO's decisions. I felt better following her protocol after I got a second opinion that told me in essence the same as she did.

Claire in AZ

Chemo is recommended for all stage cancers except perhaps stage IV where there is lymph node involvement. Some of those stinky little buggers have gotten into your lymph system and you need to whack them good.

Hi!

I wasn't diagnosed with ILC but with IDC, so I can't speak to your particular kind of cancer. However, your MO's chemo recommendation is hardly unusual for someone who is Stage IIIA. Indeed, Stage IIIA is considered to be locally advanced cancer. Chemo is not considered an aggressive treatment for Stage IIIA.

Secondly, your cancer may be growing slower than Grade 3 cancer, but it is growing faster than Grade 1 cancer. If it were really "slow growing," it would be Grade 1. By the way, even those who have Grade 3 have probably had their lumps for a few years at the least. So, years in the body do not indicate that your cancer is particularly slow growing.

Yes, MOs tend to follow guidelines. If you want an MO who is willing to bypass the guidelines, you probably need to find a new one. You could shop around and interview MOs to find someone who is more flexible.

Best wishes!

Hi Lilly55. LTNS!

And Leydi, I am also a Lobular Stage IIIa who had a BMX, and ALND 10 months ago.

Many, if not most Oncologist's are unaware of the differences between treating Ductual and lobular cancer. Studies have shown again and again that standard Taxol treatments don't work for lobular cancer

I went through 4 Oncologists before I found a women who specialized in breast oncology and knew how to treat Lobular cancer. There's loads of very recent research your oncology generalist is unlikely to know.

Anti-estrogen treatment is the best if your cancer is ER+ If not, that's not treatment I know much about. I'd select early menopause if not already in, and shut down or remove ovaries. You're in peri if not full blown menopause, and are so close now. Femara works the best. Tamoxifen not so much. But you aren't able to take it until Menopuse. I had an ovary removed at 48 for cysts. My mistake was starting bio-identical hormones and staying on for 10 years. Don't delay the inevitable, I'd advise since estrogen is the enemy. And the meds will kill or greatly slow down the estrogen sensitive cells everywhere. Chemo is too big of a gun, and hurts more than helps IMO

I had bi-lateral, concentric lobular cancer so chose BMX and an ALND for a few micromets in my lymph nodes. I've seen the poorest results with those who do lumpectomy' s and radiation + chemo. One lobular variant is from an auto-immune problem, so harming your immune system is bad.

Lumpectomies often result in poor margins, with more surgeries, infections and scarring. I'd suggest saying goodbye to the girls with this Cancer. You'll have better aesthetic results too with the right Plastic surgeon. You DON'T want to worry about your breasts having cancer all the time. I had a straight to implant, nipple sparing masectomy with no expanders. I had to go a little smaller: 475cc. Cosmetics are good -- getting used to silicone? Not so easy, but infections and continued worry are worst

I've never received recurrence rates more than 30% with my choices. In fact, most women who have breast cancer as a whole never have it again.

Lobular is a sneaky cancer, and you still need to be vigilant and have frequent follow-up. I still have my leftover nodes checked frequently by ultrasound.

I hope you've not started chemo yet. Lilly55 and I are well read and have chosen more conservative chemo paths in response. And after watching peers with chemo, I don't regret it.

I would be curious to know what auto-immune problem causes lobular as well. Auto-immune disease is, by the way, in one sense the immune system being hyper-active, not impaired. Also curious if anyone has some of the studies about the (lack of) efficacy of taxols in lobular BC. Some studies just looked at pCR rates. This one went further:

Patients with ILC achieved a significantly lower pCR rate compared with non-ILC patients (6.2 vs. 17.4 %, P < 0.001). The pCR rate was 4.2 % in ILC/HR+/G1-2, 7.0 % in ILC with either HR− or G3, and 17.8 % in ILC/HR−/G3. Mastectomy rate was higher in ILC compared with non-ILC patients irrespective of response to NACT (pCR: 27.4 vs. 16.6 %,P = 0.037 and non-pCR: 41.8 % vs. 31.5 %, P < 0.0001). Age and HR independently predicted pCR in ILC. In ILC patients, pCR did not predict distant disease free (DDFS) and loco-regional disease free survival (LRFS), but overall survival (OS). Non-pCR patients with ILC had significantly better DDFS (P = 0.018), LRFS (P < 0.0001) and OS (P = 0.044) compared with non-ILC patients. Patients with ILC had a low chance of obtaining a pCR and this is not well correlated with further outcome. [meaning that the lack of pCR does not seem to have a negative impact on survival] The mastectomy rate was considerably high in ILC patients even after obtaining a pCR. We, therefore, suggest to offer NACT mainly to ILC patients with HR-negative tumours. http://link.springer.com/article/10.1007/s10549-013-2751-3#/page-1

In general, statistically speaking, lobular shows a slightly lower chemo sensitivity than ductal. However, let's say, hypothetically, that chemo fails to do its job properly in 5% of IDC cases versus in 10% of ILC cases. That would mean that you have a higher risk of chemo failure in ILC, but your chance of it working would still be way higher than the chance of failure.

I was told that a breast cancer cell is a breast cancer cell, even if it leaves the immediate area, so lowering estrogen will still work on the cells that got away. Their make-up is the same.

Lobular cancer is an unusual cancer, in that the cells lose cohesiveness and don't stick together to form good tissue, but form in lines -- often resembling a spider like pattern. This is caused by loss of e-Cadherin. LCIS isn't considered a true cancer. Here's one link:

http://www.news-medical.net/news/20151009/Research...

I know I have other auto immune diseases, so taking down my immune system isn't a good choice. I was also just diagnosed with a rare collagen disorder: Ehlers Danlos syndrome. I produce crappy connective tissue and am wondering how that may play into my cancer. So, my treatment may differ from others. Lacking the normal genetic causes: CDH1 and PTEN gene defects are found in over 50% of Lobular cancers, I'm having more detailed testing in hopes of a more personalized cure.

Cancer is caused by defective genes. Our immune system destroys thousands of cells with defects a day. We're just learning why it misses certain cells and the out-of-control growth called Cancer happens. Lobular is an even stranger beast, as it's slow growing, and usually recurs much later than Ductal.I'd be willing to bet $ they'll find the problem isn't not killing all cancer at the outset, but rather repairing defective genes still making cells with no e-cadherin, no glue.

This is a different article about the 3 types of ILC: http://www.nature.com/articles/srep18517

It says about the IR [immune-related] and treatment:

"Both IR and HR subtypes show similar clinical outcomes (Figure S15). To identify candidate therapeutic options, we profiled a set of 15 ILC-like cell lines. Since there are relatively few good ILC breast cancer cell lines, we gathered the best available cell lines. More specifically we selected cell lines with inactivating mutations in CDH1 (E-cadherin) and CTNNA1 (α-catenin) resulting in inactivation of the complex these proteins belong to. We also employed gene expression profiles to verify that the cell lines resemble the subtypes and used these profiles to map the cell lines to the IR and HR subtypes (Figure S16). We then used the response data for 88 drugs23 on a subset of these cell lines to test for differential drug sensitivity between the subtypes (Additional file 8). We retained six drugs showing differential response at an FDR < 0.25 (Figure S17). Cell lines of the IR subtype are more sensitive to three different DNA-damaging agents: Bleomycin, Cisplatin and the topoisomerase 1 inhibitor SN-38."

Yorkiemom,

The truth is that some of us have read far more research on Lobular Breast cancer than your average Oncologist. They have to know about many different cancers, so rely on treatment guidelines updated maybe every 5 years. They don't have the TIME to spend as a retired person such as myself does for reading Medical Journals.

I have a Grad degree in Health Training, including an extensive background in working with people with complex disabilities, although a desire to learn about Lobular cancer is all it takes. Do searches. If you don't understand something, there's people here who can clarify.

Europe thinks we treat cancer too aggressively, with too much cutting and toxic drugs. And the more aggressive treatment, the more Dr's are paid. Private clinics are raking in the dollars with their chemo parlors. Profit motive is huge. I'm in a research clinic at my local Med school so hopefully they have other motives.

And I just looked at your stats. You have Ductal cancer. So none of what we're saying applies to you. You probably needed chemo, as a 1 cm Ductal cancer s more serious than a 1 cm Lobular. And you had 2 + nodes, so radiation and/or lymph node dissection too, no doubt.

It's OK to say you'd be afraid to follow our conservative treatment. You should be. To say no one on this forum is as smart as their Dr's is untrue. We have some very bright and educated people here. We're fighting for our lives too. And the information that Lobular cancer is different and needs different treatment is new. What we don't know is what we should be doing instead.

If you have immune system problems, you don't lower it with drugs. And a link between Lobular breast cancer and collegan disorders, makes perfect sense. Ductal cells overgrow into a lump. Lobular lose their glue and grow in strands. Perhaps one of us should start a thread here on co-existing auto-immune and/or collegan disorder. I'm not volunteering tonight to write more. Maybe tomorrow.

Leslie13, I appreciate your desire to learn about your cancer. We all do this. My diagnosis area here says IDC, but I was first, from the biopsy sample, diagnosed with ILC. The final pathology report said IDC, with ILC features. Never quite understood what that meant, though. I also had an area of DCIS. BC is a complicated beast!

Regarding overtreatment, that was definitely NOT my experience. Although I had two positive nodes, one with micromets only, I was not offered chemo due to my low Oncotype score of 14. I certainly would have done chemo if it was indicated, but it was not. My MO did not even give me the option. The reason I had radiation was because I had a lumpectomy. As you know lumpectomy plus rads is standard treatment unless one has a mastectomy. I have no side effects from rads and am quite happy with that decision.

If I may, you have an extremely serious cancer. If you don't want to treat it that's fine. Your decision. But as I mentioned earlier, I would have done chemo, if I had your stats. Also, IMHO, there is not a reputable doctor on earth who would not recommend chemo for an advanced and aggrerssive cancer. You brought up the issue, so I hope you are not offended if people answer honestly.

In addition, I have two master's degrees in counseling and school psychology. I am no dummy, and have done my homework, albeit through a crash course, in cancer. I do agree I am not as aware of lobular characteristics as ductal. But I am not fond of Russian roulette, and that's what it seems to me people with aggressive cancers are doing, when they refuse to follow the advice of their physicians.

Wishing us all the best of health!

Momine, I'm going by info I've read about treatment differences between Europe and actual statements made. However, I'm not in Europe so don't have first hand experience. Likely, some countries are better than others. I just wish I qualified for Europe's Lobular breast cancer studies.

Yorkiemom, I'm not playing Russian roulette. I'm a clean Lobular cancer -- no other kinds. But I don't dare take my immune system down. I'm watching abnormal test results coming in from my labs last week, and Inflammation is sky high, with auto immune problems. My dr's are aggressively doing genetic and Rhemumatic studies to identify the real and/or additionalculprits. And Femara still works. My concern is that Lobular cancer is secondary to Lymphoma or another more serious problems.

And with Ehlers Danlos, all your body's tissue is inferior, including blood vessels. There's a risk of blowing out arteries and veins or causing aneurysms with strong chemo. My worries of under treating would be gone in a minute - so would I.

So I'll still say Cancer treatment needs to be personalized. And you're a great example of education levels of our forum group. We're no dummies. Neither are my current Dr's. But I fired one surgeon, interviewed 5 plastic surgeons, and am on my 4th MO to have the quality team who's getting to the heart of my diseases.

I also have no children and an unsupportive family. My siblings main concern is getting as much from my parents' estate as possible. My choice is quality over quantity of life. I've been living in Chronic pain from the Ehler Danlos since my 30's, and I had a hip replacement 3 months ago. My body and mind are at their limits.