Invasive Lobular Cancer (ILC)
Comments
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@KezzaG It's pretty common for the end of treatment to inspire depression and anxiety. My advice would be "get thee to a counsellor". I fell apart pretty much at this time and I've heard the same from many people. I saw a psychologist for a few months afterwards. While you're going through active treatment, it feels like you have a plan and are doing something positive towards recovery, then all of a sudden you're in freefall. I don't know your exact situation, but the general followup is reviews with the oncologist and surgeon on a regular basis. For me, having finished chemo and rads last September, I have been seeing my onc about every 3 months and surgeon every 6. At some stage my onc will cut me loose to 6 months and I will alternate between the two of them so that I see one every quarter. Are you going on to some sort of hormone therapy? I did ask my onc about recurrence and anxiety. His comment was that I needed to try to manage the anxiety and live as though I was cancer-free because to do otherwise, was not living. He didn't suggest that it would be easy. I'm doing my best but I do find the side effects from the hormone therapy do hinder this significantly. I'm also finding out that the hormone therapy may be more important for long-term survival than the chemo so I am determined to find a way to manage this. There's no easy answer - we all hope to be on the side of the stats that is good but obviously some will be on the other side. I think positivity can be over-rated - we can try for it but most of us fail. I'll settle for management. I don't have any evidence of cancer at the moment and until I find out otherwise, that's all that I'm working with.
As to info about ILC - you won't find a lot because there's not much there. The American lobby site seems to be the best source of knowledge (at least that I've found). But not surprising as it's a much larger population base. I do remember my onc saying not to read too much into the predictor calculators because they're based on ductal and the results won't be valid for ILC.2 -
- This information might be helpful
- Sub types of ILC
- Classic: small cells that invade locally.
- Solid:The cells grow in large sheets.
- Alveolar:The cells grow in groups of twenty or more.
- Tubulolobular:Some of the cells form small tubules (tube-like structures).
- Pleomorphic:The cells are larger than the classic form and the nuclei look different from each other.
- Signet ring cell:The tumour contains some cells that are filled with mucus that pushes the nuclei to one side
- Lobular’s metastatic spread is also unconventional. While ductal spreads to the liver, lungs, bones and brain, lobular tends to go to the bones and ovaries or enmesh itself in the gastrointestinal tract, the abdominal lining or the tissue around the kidneys and ureters. But lobular survivors aren’t always aware of this oddball spread pattern. Nor is it common knowledge among the primary care physicians who care for them years after treatment. This is especially problematic because lobular leans towards late recurrence.
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I second @Sister comments re: long term hormone therapy being most important in our treatment. My Onc has said he strongly strongly advises 10 years for me if I can tolerate it. I met with a plastic surgeon last week to begin discussing recon and he said he’s heard of new research that’s indicating as many as 15-20 years of hormone therapy now. So who knows by the time we are nearing our 10 year mark we may be told nope sorry more to go!
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Just discovered there are 2 Lobularbreast cancer groups on Facebook0
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@KezzaG @EAA I get so fed up with being told to 'stay positive'. It makes zero difference and I think can lull you into a false sense of security. Which could lead to a much nastier emotional result if the f****r does come back, and possibly lead you to not spend your time wisely.
I would much rather we were told to "stay realistic". Give us ALL the information: breast density, the fact that mammograms aren't perfect, especially with ILC, risk factors, and that 20 - 30% of ER+ early breast cancer will recur. There have been people here who've not been told about the genomic testing because their doctors have (erroneously) thought they couldn't afford it.
We're NOT babies! I'm a bloody grown-up. Treat me like one.1 -
Yes! Happened to me re costs.. I was furious! Their job is to give us all options and if their facility can’t provide, to recommend someone who can! How we decide to pay or not pay us none of their business!
We should not be denied best practice because of money!
Shocking arrigance!2 -
@arpie I've been involved in a couple of focus groups lately which have indicated that more focus is going to be given to the period after active treatment, to the survivorship issues. It made me feel a tad hopeful that things might improve.
@KezzaG The worry about recurrence or spread is ever present, ebbing and flowing, to a greater or lesser extent in all of us. I've done everything I could to reduce my risk. I've hardly any breast tissue left, but I have a genetic mutation. A new cancer could form, or I could have a recurrence in my armpit, scars or chest wall. There's half a chance I or the doctors could detect the first three, but because I had a double recon my chest wall is invisible. It would never be found until it spread. They won't even ultrasound my armpit annually, I just get a physical examination. I've perpetually got all sorts of aches, pains and sensations going on in there so I'm fretting about it daily. I am not overwhelmed by the worry, but it's a constant niggle. It's part of the bummer that is 'new normal'. It sucks to live with this hanging over our heads, but what to do?
My sister died, my mother survived. Which category am I going to fall into? All I can do is hope it's the latter. This is the uncertainty we all live with. The only thing I can say is you're not alone. We're with you lovely, hang in there. K xox0 -
Because a lot of women survive breast cancer more than the medical 5 years, I am expected to survive too. I haven't told anyone about my new found predicament except a freelance journalist friend.0
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Alpelisib Approved as the First and Only Treatment Specifically for Patients with a PIK3CA Mutation in HR+/HER2- Advanced Breast Cancer
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@berry I struggle with the five year stat. It's quoted all the time but it's a bit of a furphy. There's no tracking of death from breast cancer after that as far as I can tell. The ten year stats are 'all causes'. The five year 91% stat contributes to people thinking BC is basically cured. I have told some very surprised people about the realities. Especially people who tell me BC research gets too much money. Despite the stat that 1 in 7 of us will get BC, there is definitely a lack of knowledge about it out there in wider society.1
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Here are some more divisive stats.
According to the American Cancer Society, 5-year survival rates are:
- stage 0 — 100 percent
- stage 1 — 100 percent
- stage 2 — 93 percent
- stage 3 — 72 percent
- stage 4 (the metastatic stage) — 22 percent
- In terms of ILC types survival rates for cancer are typically calculated in terms of how many people live at least five years after their diagnosis. The average five-year survival rate for breast cancer is 90 percent and the 10 year survival rate is 83 percent.
The stage of the cancer is important when considering survival rates. For instance, if the cancer is only in the breast, the five-year rate of survival is 99 percent. If it has spread to the lymph nodes, the rate decreases to 85 percent.
For hormone positive cancers these are hormone therapy stats - Can hormone therapy be used to prevent breast cancer?
Yes. Most breast cancers are ER positive, and clinical trials have tested whether hormone therapy can be used to prevent breast cancer in women who are at increased risk of developing the disease.
A large NCI-sponsored randomized clinical trial called the Breast Cancer Prevention Trial found that tamoxifen, taken for 5 years, reduced the risk of developing invasive breast cancer by about 50% in postmenopausal women who were at increased risk (12). Long-term follow-up of another randomized trial, the International Breast Cancer Intervention Study I, found that 5 years of tamoxifen treatment reduces the incidence of breast cancer for at least 20 years (13). A subsequent large randomized trial, the Study of Tamoxifen and Raloxifene, which was also sponsored by NCI, found that 5 years of raloxifene (a SERM) reduces breast cancer risk in such women by about 38% (14).
As a result of these trials, both tamoxifen and raloxifene have been approved by the FDA to reduce the risk of developing breast cancer in women at high risk of the disease. Tamoxifen is approved for this use regardless of menopausal status. Raloxifene is approved for use only in postmenopausal women.
Two aromatase inhibitors—exemestane and anastrazole—have also been found to reduce the risk of breast cancer in postmenopausal women at increased risk of the disease. After 3 years of follow-up in a randomized trial, women who took exemestane were 65% less likely than those who took a placebo to develop breast cancer (15). After 7 years of follow-up in another randomized trial, women who took anastrozole were 50% less likely than those who took placebo to develop breast cancer (16). Both exemestane and anastrozole are approved by the FDA for treatment of women with ER-positive breast cancer. Although both are also used for breast cancer prevention, neither is approved for that indication specifically.
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I assume that those stats include metastasized breast cancer as well.
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Thanks Brenda.. helpful stats. My first ductal Er+ HR-ve , I had chemo, then Arimidex for 2 years ..developed osteopenia , put on Tamoxifen for next three years. Two and a half years Off hormone therapy self discovered Grade 2 Invasive Lobular tumour. This, I think could have been developing through its cell divisions while I was on Tamoxifen! This pathology was not considered by the
practitioners who recommenced me on Tamoxifen. After three
years, fatigue was extreme I asked to go back into Arimidex.
Sc Prolia has been added for the bone loss. I cope well with
Arimidex.. I don’t seem to fit the stats! Especially the ongoing
cover when you’re off it. .... don’t ask me to ask the Onc, they
haven’t an answer.. too busy following basic recipes for intervention.
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forgive me EAA but I will postpone immediate celebrations.0
