Team ILC Warriors
Comments
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Well, I got my MRI results. I already knew that I had ILC in my left breast from my previous biopsy. The MRI showed a 1 cm mass in my right breast so I am scheduled for an MRI biopsy tomorrow. Nothing showed in the right breast by ultrasound or Mammo. It is interesting that the NP stated "we want to know if it is cancer or not so we can plan your surgery." I agree with that but also am thinking….the mass did not show up on ultrasound or mammo what else could it be but the "sneaky" cancer. I had already decided on a BMX so no further decisions in that area. I do worry about lymph node involvement and really will be glad to know about my nodes.
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I asked two different doctors if lobular was more likely to show up in other breast and asked a surgeon for a BMX but was totally refused and told tere is no evidence ILC occurs in contral lateral breast.................we really are on our own with this at times....................
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Thank you for the shout-out, John Smith, and I'm glad the thread I began got you going on your own research.
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Thank you everyone for your knowledge!!!!! It give me comfort and direction..
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Good evening ladies. I usually don't worry or wonder about if my lovely ILC cancer is going to come back - or make a new appearance. But I had a job offer come in this week that was "excellent" - everything I wanted and more.
But their health benefits were terrible. They were only offering a long-term disability - and no short-term. Which means, should I ever need an operation, or worse, get the C word again, then I was on "employment insurance benefits" for 16 weeks at 55% of my salary. Forget paying a mortgage and bills and putting food on the table.
In 2013 I had to go on the "employment insurance benefits" - and had a hard time making ends meet. This is not something I would want to happen again. I was battling cancer and should not have had to worry about house payments, loans, utilities, etc ..
So because I have had ILC - I questioned all of this insurance benefits stuff - and turned down the amazing job. I do have a permanent job right now and have a great benefits package - but my job isn't the greatest.
I guess I do question - and worry - about ILC showing perhaps showing it's ugly head one day .. but I will be sure as heck ready (both mentally & financially LOL) to beat it again.
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I quite often question the idea of a lumpectomy over a BMX. The only reason I went for the lumpectomy is because my surgeon convinced me that it wasn't at all necessary to have a BMX or mastectomy. At the time I was new to this whole breast cancer thing and had little knowledge of ILC and it's ability to hide and go bilateral. I think if I knew back then what I've learnt from this forum now I probably would have chosen BMX as I too am a total wimp when it comes to surgery. I also have a lot of scar tissue and fat necrosis left over from my lumpectomy so my surgeon has warned me that when I go for my first mammogram next month to expect that there will be a lot of false findings, something to look forward to. Sometimes I wonder if saving my breast is worth that kind of anxiety.
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Hello my ILC sisters. So glad to check in to the boards this evening and find this thread. I was dx in 2012 and my treatment is shown below. Still happy with NED.I am a retired senior - difficult to say that lol. No LE but I wear sleeve and gauntlet while exercising and flying.
Have moved to a gluten free and healthier diet because I love to cook / bake and follow the research on nutrition. That cleared up acid reflux.
My body struggles to make Vit D so supplement up to 8,000 units daily. My Vit D blood test is free now because I have osteopenia - found that out from DEXA scan in 2012. Had genetic testing and my BRCA 1 and 2 is -ve.
My mother (deceased), sister (twice dx) and daughter have had BC. Sister and daughter also BRCA -ve.
It took about a year to feel comfortable with my new normal.
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mrsDarcy, could you have supplemented with a better disability/medical plan that you pay for separately? Would you have been paid more at the new job for that to make fiscal sense? That really stinks that you had to turn down the dream job. :-(
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gemini4 - Hi.
The new job was only $3,500 more (per year) - and the benefits package required that employees pay 40% and the employer 60% - and the coverage for everything wasn't that great - and had no dental at all.
Right now I pay a whopping $10 per pay (LOL) and have amazing coverage. I think in the end, the $3,500 would not have gone very far considering what I would have to pay right off my paycheque for my portion.
I never looked into extra insurance, not sure how that would work in Quebec, Canada. But I am okay with everything now - I can always keep looking for another dream job - that door hasn't shut
Just the insurance package has to be up to par .. not settling anymore when it comes to my health
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MrsDarcy, that all makes sense ... As you say, It's likely that the pay difference wouldn't have covered all that you need to get the same benefit package that you currently have. My husband and I are both self-employed (and with being in the US, it's apples to oranges vs Canada's healthcare setup) -- we pay all of our insurance ourselves (health, disability, life). Our health insurance premiums are a full tax deduction, but the others are not. We have had our own business for 16 years now, so we just hold our nose and make the payments ... And chalk it up to "cost of doing business." Before my husband quit his job to start his own business, we were advised to get the disability insurance while he was still employed (apparently you're not considered as much of a risk, which translates into less expensive premiums).
Anyway, fingers crossed that another dream job comes your way, MrsDarcy -- the fact that you were offered one sets up a good "success consciousness" momentum for you! There's another one out there for you that offers all your requirements :-)
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Gemini4 - believe it or not - the other company came back with a counter offer yesterday. I have till Monday to decide - but in the meantime, my boss now has been bending over backwards to make things work (he knew I was going to leave).
The counteroffer is that the company will give ME the short-term disability portion on my health insurance. They will pay for it so that I am covered should anything ever happen.
So - I am back to weighing the cons and pros - and only because my boss now has "seen the light" and doesn't want me to leave. LOL I have never had a boss fight to keep me - nor a company make compromises to get me.
Was pretty good for the ego this week LOL but my head is pounding.
I have an appointment with my family doctor (new one) next Thursday. I have been having some really wierd issues about 2 weeks after my period (bad pains) - for a few months now. I am hoping she will send me for a vaginal ultrasound since my MO doesn't see the necessity (nor does my GYN). I get a mammo and ultra-sound once a year only. I haven't even had blood tests done since December 26, 2013.
I hope this doctor will see that a more intense follow-up is required - I am bringing her my pathology papers, etc .. and will discuss that my cancer was ILC too. Somebody needs to listen.
Regardless - I am still in a fabulous mood
And it's Friday to boot !!!!
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MrsDarcy - that's so awesome! What an ego booster! Good luck with your decision. What a nice problem to have!
Tania - I had one surgeon try and fail to get rid of my tumors with 2 lumpectomies. When I opted for a mx instead of lx #3, he then tried to dissuade me from taking both breasts saying that is it absolutely not true ILC tends to go to the other breast. I didn't care about all the research. He supported my decision to do a BMX- but only for reasons of symmetry in reconstruction. He is a well known surgeon at the head of a bc center, but in my mind I questioned whether he had a firm grasp on what ILC really is. So I changed providers and will NEVER EVER regret having my BMX. You really do have to follow your gut when making these choices.
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wow, MrsDarcy! That is a very exciting development. Keep us posted!
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Dianne- I am sorry to hear this is happening to you. Its a fear I think most of us live with and try not to think about. I am glad you went and had your pain checked. Thank you for coming to the boards and sharing.
Flopsy and Chloesmom- I had a lumpectomy originally and felt it was not my choice just sort of standard practice. I then did my rads and a year later had the DIEP surgery and double mastectomy. I think back of my oncologist and radiologist assuring me that my good side was clean. I wasn't going to take the chance and it did turn out to be the best choice. My 'good' side was filled with pre-cancer of both kinds and ready to show its ugly face soon. I am almost 1 year out from the surgery, I have had 2 more since and 1 more to come to pretty things up. For those that go the lumpectomy route I think that is fine for some, I was one of them. My mind and fear of the unknown were what made me change my road. I also had a total hysterectomy and honestly that has been harder to cope with than losing my original breasts. The choices we have to make are so hard.
I am not taking anything. I need a good oncologist and have yet to find one. I thought if I did the hysterectomy I wouldn't need to take anything. Now he tells me I should be taking it. Dealing with the menopause has been rough for me and I just hate to have to take any drugs at this point. "sigh" My nodes were clean but I had 2 micro mets outside of the nodes which I try not to think about.
Lily and Claire it is good to see you both posting. I haven't posted in a long time but I do read the boards when I get a chance.
Gemini!! Hope you are doing well.
Best to you all.
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Lemon I thought the same when I saw your name come up, it is great to hear from you..........I had a hysterectomy too and recovery as hard and now on Aromasin I am as dry as sand paper if you get my drift, never ever thought i would need an interior moisturiser.........and at times I really resent it but the alternative is feeling like i am chafing when I walk...........yuk
HUGS to you, really glad to see you here again
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I wonder if there is one particular doctor on the planet that has a passionate interest in ILC? This group is like a think tank and if only someone could hear us that is actually trying to do something to help us!
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In the case of lobular breast cancer, my understanding is thst it is faster growing in some people than in others, At my first appointment with my breast surgeon, I asked him what would have happened if I had skipped my mammograms for a few years (never a good idea but many people, including myself in the past have done so). He replied without missing a beat, that I would be dying of breast cancer. He did not fight me at all when I said I wanted a double mastectomy, in fact he said that would have been his advice since having it in one breast greatly increases your chance of getting it in the other breast. So lucky we were on the same page on most things. And of course when the pathology came back after the DMX, it was worse than belived going in. The cancer had just begun to invade a lymph node on the bad side. Cancer is a tough disease, and lobular breast cancer that much tougher.
My sincere good wishes to everyone batteling this disease. Hugs to all.
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Lobular breast cancer is a tougher challenge than ductal or triple negative? Is there any research on this? I know its typically found further advanced but that is usually on initial diagnosis.....................
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For me it was very challenging to treat. My surgeon was surprised when he got dirty margins after 2 lumpectomies. Plus, it initially showed dramatic shrinkage on all my follow up ultrasounds as I was undergoing neoadjuvant hormonal therapy. But in reality, it hadn't shrunk as much as it appeared on the images. I think we all know that ILC grows in a single cell fashion, kind of like spider legs vs. a lump. But I didn't know that at the time. Before my re-excision, it was difficult for the radiologists to find the tumor and insert the wire. They had to rip out the wire and try it again. The younger radiologist left the room to get an older radiologist. Then there were more people in the room...they even did a mammogram before the lumpectomy to try to locate the tumor. I was late getting to surgery. Granted, I had a challenging approach for my initial treatment, but I think it illustrates how elusive lobular is and how it can sometimes be challenging to treat, even for the most talented surgeon. The fact that ILC it is in the minority means that surgeons have less experience dealing with it and less data from research to support treatment plans. But that's just my personal opinion based on my experience.
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Oh and a few other challenges included the diagnostic tests. The radiologist who did the biopsy had difficulties getting a sample. It took several attempts with several types of instruments. It was the most pain I've ever experienced. Everyone was surprised by how hard it was....AND the MRI didn't "turn out". They wanted to do it over because it didn't show up very well. I told them I was going elsewhere to have it done.
I don't know if it was me or what. But I had a very bumpy road at first. I'm hoping that's all over now!
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It is so interesting how different every situation is... my bc presented as a discrete lump--- very easy to get according to the surgeon--and very slow growing according to 2 oncs..... I think the only thing that really threw us for a loop was the intermediate oncotype score....my onc had told me that the hormonal therapy would be the most important item in the arsenal for this type of bc.
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What weirds me out is the data or lack thereof I sit here bald with SEs from chemo I wonder if it's going any good at all for my slow growing tunor.
Ductal (a) + Lobular x (b) = 5% reduced reverence for grade 1 tumor
Since they haven't done research to separate into groups I hopeful that the statistics don't really mean that say a 6% reduction in ducal and 0% for lobular. We have no way of knowing!
I'm hopeful and taking a chance it doesn't turn out this way if they ever break it down into groups. If it did I d really be POd to go through this chemo hell for nothing
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Chloe, I wasn't even offered chemo, they immediately said it would do more harm for me than good. I often reflect on that and wonder. I used to feel lucky but after over 2 years of surgeries etc.. I know we have all been though our own battles. What I learned is to force myself to 'trust' someone or I would never sleep again!
Lily- I know what you mean about dry. In this day and age you would think they could do something for us? Something with no hormones etc.. they can help a man with the blue pill and many others but who is there looking out for us? I know we all have to go though menopause at some point but honestly I didn't know how hard it was really going to be. Having no female organs left is also a strange realization. ((hugs)) I have missed you.
I don't know if any of you had DIEP surgery but my right boob has a horrible itch deep inside. It is driving me crazy, any idea how to stop the itch? Wish I had a way to reach into it and get some relief! I keep shaking it. LOL.. I barely slept last night. Wondering if I should take some Benadryl or something?
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lemon they wanted me to do chemo because of oncotype and PR- Anti hormonas not as affective with PR-
Have to try something. I trust my MO. Just wish they had more info and studies weren't aggregate where they lump everyone together and don't look at ILC.
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hello ILC Warriors... I could use some input from any of you. I have an appt with my pcp to address pain below /above breast that had ILC.. oThe appt is in 1 1/2 weeks.. Over the weekend I started having pain in my left shoulder blade ,left breast area and a stiff neck. it comes and goes-strangist thing.?Also the outside of my left foot and rt knee, only when i would use the stairs. I woke up to pain in my rt leg just below my knee. Right away I am thinking my osteoporosis is worse I have tried to refrain from taking meds due to side effects ----can anyone chime in and with advise or having same symptoms.. m
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mtks - it could be the Arimidex. It gave me arthritis in almost all my joints and in my lower back. Only discovered it when I was having continuous lower back pain that couldn't be explained, so did a bone scan.
If it is Arimidex, you could try another AI. I went onto Aromasin that I tolerated fairly well for nearly three years.
Trish
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I met with my RO today who said no rads! Really made my day. Still grappling over whether or not to do chemo. MO suggested 4 rounds of taxotere and cytoxan but backtracked and changed her recommendation. She insists that some form of hormonal therapy is a must but tamoxifen is off the table due to side effects. Running blood tests to determine if I'm menopausal and I'm meeting with my ob/gyn to determine if I should have lupron or ovaries removed. MO doesn't feel she should make that call. Any thoughts???
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Firstwild, an AI is in any event a better choice for ILC. The advantage of lupron is that it is reversible. The ooph is forever. I chose the ooph for a list of reasons and I know some people have trouble with the shots, although not sure what kind of trouble exactly. Either way, overnight menopause can be a bit of a wild ride. I did have trouble the first 6 months, including a bout of depression due to the sudden estrogen deprivation. However, most of it has passed and now I am quite enjoying the absence of PMS, I have to say. Have a good discussion with the gyn and YAY! for skipping rads.
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mtks - my experience with aches and pains was the same as Trisha's. Could NOT tolerate Arimidex. I was crippled over and could not walk. Went into the docs with tears in my eyes on the verge of crying so they switched me to Aromasin, which is much better for me. I must admit I have occasional, mild aches and pains. I have osteoarthritis, osteroporosis and am post menupausal. So, who knows...Like you described, I also have pain radiating from my knee, but if it persists as bone pain, I'd get it checked out.
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Well, my biopsy results on my right breast also was positive for ILC. The tumor is ER +, PR-, HER2 -. My tumor on the left breast was ER+, PR+, and HER2 Equivocal. My breast surgeon will recheck the tests after surgery. I wonder how many women have bilateral ILC? I feel very lucky that my ILC was found in both breasts and my original decision to have a BMX with DIEP reconstruction was right on. This week I had my PS and BS pre-op appointment. Next week I go to my cardiologist for a cardiac clearance; get my genetic testing results; and finally go to my hospital pre-op appointment. I did find out I will be in the intermediate ICU post-op so they can monitor my flaps closely. I am ready for my surgery day on April 16th. Waiting is hard.
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