Team ILC Warriors
Comments
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My husband had cisplatin for his metatastic bowel cancer - very nasty allergic reaction. He had to be admitted to hospital for each treatment and dosed up with lots of antihistamines. He's alive and well 6 years later - he did have lung surgery too.
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Suzie, that is so great that your husband got through that.
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Sure is - he was lucky in that he had a small tumour in his lung and it was in the perfect position to operate. Anywhere else and it might not have been posible.
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This will make you smile.......the shadow on my lung was my uni breast!! How daft am i......have inhaler and antibiotics now in hope it clears problem, went to emergency doc today........
I do feel silly but still not sure what the dots are....0 -
Lily- that's great news!
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Hi to All,
I'm also ILC and just found this thread. I posted a few times on different topics, but not a lot.
My 1st dx anniversary is coming up in May, so I'm experiencing a little bit of sadness and anxiety.
Lilly55, I also have a couple of tiny spots on my right lung, which are to small to biopsy. My dr thinks it is most likely B9, but I'm worried and refuse to sit around and wait...
I've met with a lung specialist already and I asked to refer me to thoracic surgeon. I will be meeting with him this Thursday.
My nodules showed on ct scan in Dec (month after chemo and during rads) and were discribed as most likely inflamatory in nature.
I had another scan in April and they are still there! They haven't changed their size but if it was infection related , wouldn't they clear out in 4 months?
Is it possible to get it from rads? (My spots are at bottom/close to edge of the lung).
Did anyone have a similar experience that turned out to be a "false alarm"?
Maggs0 -
I dont know mine my be residual,for six months as not been fully fit since chest infection post rads last year so could be that
My anniversary of surgery is this week....0 -
Mags, I am having a problem with my lungs currently. Chemo (dose dense ACT ) has been stopped. I was about to start my first Taxol when I developed high fever and significant breathing problems. No infection. Had ct and right now everything points to something called Sarcoidosis, which is in my family. Anyway from my reading I have found that if one has the predisposition for Sarcoidosis chemo can trigger a flare up. I am having another Ct this week ( a high resolution) and they stopped the prednisone as they want to get biopsy to confirm.
Anyway in my research I have foound that there are many reason one can have nodules in lungs some benign some not so benign. Usually they can tell from Ct what it looks like the reason is. Do you know where in the lungs the nodules are and if there are any other abnormalities. My lung function tests were also abnormal as was certain blood work. Good luck with it and hopefully you will get an answer.
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Hey Maggs, I just wanted to tell you that I do CT's and lung nodules are very common. They will follow them for a year or so and see if they increase in size and if they dont then its benign. I have them as well. I will get a scan every year just to make sure they aren't growing. Hope this helps.
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Rdrunner, I remember about the same time, right after switching to taxol, I had a shortness of breath and some chest tightness. I was told to rush to Emergency so they could check for any blood clots or infections. At that time (October 5th), ct scan was good, no infection, no nodules (except a couple of old ones - b9, not changing at all); the only thing was very high (31000) WBC, which were a result of overstimulation from Neulasta.
Then everything improved within next couple of days, so there was no delay in my next taxol.
I started rads on Dec 12, and had another CT about 10 days later (for different reason) and on this one they've noticed 3-4 tiny nodules (all less then 0.5cm). They "looked" to radiologist as inflamatory/infection related. This description made sense as the day of the scan I got sick (flu/cold). But I insisted on following up on it in April, and they are still there! And this time I didn't have any infection! They can't say for sure what they are. My lung function is fine, no problems here.
I'm so glad that your dr is able to diagnose your nodules from CT.
How big are your nodules?
What's the plan in your case?
If it is sarcoidosis - how will they treat it?0 -
Memlcbee, thank you for sharing.
I will see what dr is going to say on Friday. I'm paranoid because I had 2 primaries (breast - stage III and colon - early stage, so no chemo or rads, just surgery) at the same time! And I basically found them myself, and had to push my GP very hard to actually run tests to confirm it. So being misdiagnosed twice - I'm probably "seeing cancer" everywhere! Lol.
This is why it is so difficult for me to "wait and watch", even if it means another surgical intervention.
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HI everyone. I hope you're all having a great week so far.
I've been doing a lot of thinking about what's next (surgery) and I don't know what to do. Do I have a lumpectomy or mastecomy? My surgeon is saying that lumpectomy (providing the second biopsy is negative) is the least invasive option. But I'm concerned that I'm going to have more cancer in the future.
How did you decide what surgery to have and why? Your input will be invaluable.
Kelley
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BB, I did not have a choice, because my tumor was large and situated in a way that made lumpectomy impossible. I then opted to have a prophylactic MX on the other side at the same time. That was my choice, and something most doctors would consider unnecessary or even hysterical overkill.
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BB..I wanted a bilateral mastectomy as soon as the doctor said cancer, he advised lumpectomy in the beginning, after the MRI. showed more than one area of cancer he changed to mastectomy. I insisted on both being taken, my reasons being I didn't want to only have one breast, I felt I would look at the other one as a ticking time bomb. We each have to make our own decisions, in my opinion one of the hardest parts of having cancer. I asked myself what option would give me peace, and what I was willing to live without, in order to give me the best chance at a long cancer free life.
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BB -
It is such an agonizing decision. I feel for you.
Like gramwe my initial gut reaction just after the initial biopsy results came back was to have a double MX.
Then my ultrasounds and mri showed a tumor of about 1.5 cm and no node involement. Biopsy came back grade 1. My surgeon suggested lumpectomy. I said ok - signed the consent and booked the surgery.
A couple of days later my gut went to work again. I called the surgeon and said I had changed my mind. I switched to have MX on the cancer side - and like Momine and gramwe - I opted to have a prophylactic MX on the other side at the same time. I'm sure my surgeon eye-rolled the "hysterical overkill" too.
Final path after surgery: tumor was a centimeter bigger than what the scans showed and there was node involvement. And it's grade 2 - not grade 1. I just can't help wondering what was NOT showing up on the other side.
I'm about a week out of surgery and have some pain - but what I don't have is any regrets.
This is turning into a book I know. All of this is to say the decision is very personal and different for everyone. Listen. To. Yourself. Hard to do with all this new terminology and anxiety clanging around in your head.. right?
Here's a link from Beesie that someone here pointed out when I was trying to make my decision. I found it really insightful. It's a list of really important questions to ask yourself as you try to decide.
I hope it helps.
http://community.breastcancer.org/forum/68/topic/803397?page=1#post_3512276
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I had several rounds of biopsies for five suspicious areas seen on MRI. Not all were accessible via ultrasound so had to have two with MRI guidance. For several weeks we only knew of the ILC and I decided on lumpectomy/radiation. When DCIS was then found in the same breast, lumpectomy was no longer an option. Once I wrapped my head around mastectomy and did research about ILC I had no trouble choosing bilateral over unilateral. My BS was very supportive of my decision. Pathology ultimately showed more early lobular and multiple areas of ADH in the same breast that hadn't been seen on any imaging studies. I've never regretted choosing bilateral MX over unilateral.
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I read two pieces of research recently linking women with ILC to dads who had prostate cancer. Which mine did.
No cancer anywhere in the family. Nowhere. Just my dad's prostate cancer. I do wonder...
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Kaydee and others, on pathology it turned out that the "good" breast was also full of crap. It was not cancer, yet, but there was dysplasia, LCIS and some other stuff too. I have no regrets. I did not find cancer treatment fun and I do feel that I at least saved myself another round of it with lefty, as well as saved myself endless mammos and biopsies in the meanwhile.
That said, it is extremely personal/individual. It was right for me. That is all I can say.
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Kimby, what percentage did the research show? I ask since we know it can't be 100%. Dad didn't have Prostate Cancer and his Father died about age 40 from some thing sudden - either heart or accident. My Maternal Grandfather did though, which happens to be the blood line with five known consecutive generations of various forms of Cancer. I'm the fourth generation and have BC. My Niece was dx'd with Cervical Cancer at 27 to be the fifth generation.
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Galsal, as far as I remember, having a dad with prostate cancer doubles+ your risk of lobular (IF you get cancer). IOW, if lobular is typically 10% of all BC, among women whose dads had prostate cancer it is 20-25%.
In my family it is my paternal grandma's line that is completely cancer-ridden, and that in turn, is through her dad. My grandma died of bladder cancer, one sister died of BC at age 60, one brother died of lung cancer when he was in his 50s, another sister died of liver cancer, which was probably a metastasis of a different cancer, but she succumbed quickly once it was found and she was in her 90s.
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Just curious if you ladies have been tested for BRCA1 and 2. I went for my genetic counseling and testing almost two weeks ago and I seem to remember the counselor mentioning a relation between prostate, breast and colon cancer with one of those genes. My mother and her father both had colon cancer. Thankfully, my mom is 4 years from diagnosis with liver mets and is NED! I now have ILC at age 44. My mom's sister also had BC when she was 42 (she is 15 years out!). My maternal grandmother died from endometrial cancer. Her mother died from uterine cancer. We won the lottery in our family.
Amy
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Thank you ladies for your input and insight. This is tough.
I'm thinking that mastecomy will give me the greatest peace of mind. I'm only 41 and plan to live a long life and I dont' want to be hampered by the ticking time bombs that are my boobs. I also really don't want to do radiation since I already have joint problems that might be exaserbated by radiation. I want to be able to walk, run, cycle, kayak, camp and generally play without pain.
I've an appointment with my surgical oncologist at 2 p.m. today, followed with an appointment with the High Risk department.
I'll let you all know my deicision later today or tomorrow.
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I had an MX AND radiotherapy, check this is not planned for you!
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I'm so mistrustful of ILC and it's ability to hide from mammos and other scans that I'm doing it all: lumpectomy, chemo, rads, tamoxifen now, adrimedex scheduled for next year, and (upcoming in the summer) BMX and recon.
BTW--I am very active, weight lifted and did bikram and hiked/walked throughout chemo and rads. I have (so far) not had any problems keeping me from my normal athletic lifestyle and I plan on keeping it that way!
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I had right MX only. My BS didn't want to remove so called "healthy breast", because MRI didn't show anything.... Now, when I asked about prophylactic MX on that side, both: BS and onc think that the risk of BC in that breast is very low, and they want me to consider "keeping" it and reconstructing just the missing one. But my intuition tells me otherwise, so I will most likely insist on removing that breast also.
We all know how sneaky can ILC be!
Maggs0 -
Amy - with the multiple cases of colon and uterine cancers in your family, did your genetic counselor test you for the genes associated with Lynch Syndrome? Maggs - have you been offered any genetic counseling? You sound pretty young for both breast and colon cancers and multiple primaries in the same individual can indicate a genetic basis for the cancers. I've had extensive genetic testing but everything has come back negative. The geneticist I met with said that research suspects a breast/bowel link but hasn't found one yet (as opposed to breast/ovarian in BRCA or colon/uterine with Lynch).
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Lekker, they did suspect Lynch,(apparently ILC may have connection with bowel), so they did some ancillary studies:
MLH1, MSH2, MSH6 and PMS2. They came back "intact nuclear positivity", what I was told was normal. Pathology report states that they did mismatch repair genes IHC on both tumors which seemed to be intact but IHC doesn't detect 1-2% patients. So they also did assessment of microsatellite instability in colonic carcinoma, and this one also came back normal. Under these circumstances they agreed that it is a "coincidence" that I got 2 primaries; and because I don't have any family history of cancer, they also refused the BRCA testing, saying that it is very unlikely that it has any genetic background.
I wasn't satisfied with that answer, so I had pathology redone in US, (I live in Canada), and got another opinion, which, in fact confirmed 1st one.
There are a couple of publications referring to connection of BC and Lynch, as well as BRCA1 and colorectal cancer.0 -
Hi, Dear ILC Warriors,
I just found this ILC thread again and caught up on all the postings....
I am reaching my one year anniversary after BMX due to ILC, multifocal stage 1 grade 1 (.5mm, .4mm,.2mm) ER+/PR+/HER-. No rads, no chemo, immediate reconstruction with implants, tamoxifen daily no side effects. Very easy and quick recovery. 6 months MRI and blood tests clear.
QUESTION: Should I ask my onco at my one year checkup to get the OncoDX or BRCA tests which I never had?????
I am currentily feeling very freaked out because I have many friends all around me with stage III-IV battling with chemo, recurrences, mets, etc. I don't want to forget that I had BC (it would be easy to do so, because my experience was such a walk in the park compared to many). However I have chosen to get deeply involved in the local BC community and to be very open about my BC and supportive to others.
YET I never got the oncoDX or BRCA. Should I get it done before my tumor is lost in some subterranean vault biological-archive somewhere? Will this really tell me my risk of recurrence? I am paranoid currently. I should understand this better but have a mental block.
Also I am so confused about tamoxifen. I experience no side effects that I can notice but maybe I am just oblivious. Thanks for any reason and light you can shine...
Physically and otherwise I am feeling fine. I think I have Stage I survivor guilt vis à vis my avanced BC friends, sense of ominous dread, and am feeling not so Fearlessfootish anymore. I am also weirded out about ILC and how rare it is and why I got it.
Grew up in Florida where our neighborhood was systematically sprayed against mosquitos (I can still remember the pungent smell of those insecticides!) So many environmental factors one could imagine could be carcinogenic, exposures to benzine as a lab assistant, phthalates in beauty products and hairsprays, plastics in general, chemicals in hair permanents, lotions Nivea have used 40 years, cheap carpets, drycleaning fluids from years of being a "suit," may have presented fake estrogen-like features...
FYI just tried a new website Inspire referred by a friend but much prefer this here bc.org!
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Fearless
I guess the real question is what will you do with the answer....you are one year out-- I think if you had the BRCA gene they would recommend an MX, which you had. Oncotype tells you about how chemo may or may not help you. I don't think they would give you chemo at this point a year out.... then you would just be worried.
I never had the BRCA test--there were really no indicators for me to have it so I decided against it.... I did have the oncotype and did have chemo, but I would have skipped it gladly if I did not come up in the gray area of the oncotype test.
I know there are people all around with worse situations--I felt that way too... chemo was not terrible, I had a lumpectomy--- I felt really fortunate.
I think it just depends on how you think that information will help you.
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Dear momand2kids,
Thanks so much for sharing. So helpful to hear your experiencee. You raise the most salient question: what I would do with the info on an OncotypeDX or BRCA test?
If I got a worrying score, maybe I would just get totally militaristic with organic foods or exercise or lifestyle or more frequent doctor checkups or something or carpe dieming. I don't know... If I got a less worrying score, maybe all my good intentions and habits would go to h.e.double toothpicks in a handbasket!
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