Team ILC Warriors
Comments
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I think you always have to weigh the risk vs. benefit of any treatment on a case by case consideration, depending on the tumor's molecular structure, grade, nodal involvement etc. There isn't an automatic yes, rads are good for everyone - just like chemo is not for everyone. I was told in my case the risks of rads outweigh the benefits, but I'm in the dreaded grey area. Sometimes you don't have a choice and it's cut and dried. Bottom line is...sometimes just comes down to a peace of mind factor using the "being able to sleep at night" rule. Just like the current debate with mastectomies vs. lumpectomies. There is definitely a shift in standards of care light of in light of current studies....still....it all depends. This is an exciting time in the medical community for breast cancer, but I wish they would hurry up with more definitive answers!!!
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Wow, Jimmiebell you have an amazing tale to tell!!! Thank you for sharing. It sounds like you are getting good care now with your treatment. Maybe I missed it, but at any point did you have the Oncotype test?
Tania - sorry you are having regrets about your lumpectomy. The new studies say that is the preferred way to go now. I tried it twice, but didn't get clean margins. Those of us with big tumors and small breasts luck out when it comes to that. In this case, I think (tumor) size matters. But ideally I feel that if you can, it's better to have a lumpectomy and rads instead of ALND - just because of the hassles I've had with a frozen shoulder, "mild" swelling, and now lymphedema bandaging. Oh well, never look back. Keep going forward!!
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BC101, the Oncotype test was not offerred to me when The LCIS was found, but I have since had genetic testing on the tumor from Foundation One. The cancer is driven by a PIK3CA mutation which is why I'm now on Afinitor.
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I am blown away by your story JimmieBell. Thank you so much for sharing. I really needed your inspirational words today.
Hello all, it's been a while. I hope you'll have me back. It's been an intense year and a half for me with diagnosis, chemo, rads - and tamoxifen and non-stop work.
But I'm being forced to reassess because a scan last week showed a new lesion on my liver. Terrified - all over again.
It's said to be small, around 1cm, and ER+. My onc says he believes it can be treated via anti-estrogen therapy, but I'm wondering if I need to push for something more aggressive. Can anyone tell me of the ooph experiences? Why they did or did not?
I've been down the "oh it's just stage one" road before. I don't trust the imaging with ILC.
I'm also extremely interested in the genetic mapping. Anyone got any other leads on the genetic typing test - or can share your experience? It's fascinating that JimmieBell was able to find out about the PIK3CA mutation.
This is all happening just one month before I was to undergo reconstruction surgery so I'm kinda floored right now.
Thanks for listening.
Kay
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Kay, ask your onc to run tumor markers on you if they're not already doing them. Did you have a liver biopsy to be sure it's the breast cancer and that it has not changed type? I know it's really scary, but these mets are manageable and many of us are living well despite them. You definitely need systemic therapy, hope AIs knock it out. Ytrium 90 via SirSpheres is a good backup option to look into.
So sorry you've had a reoccurance. Hold tight.
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Kay, are you not already on anti-estrogen meds? Tamoxifen or an AI? I urge you to hear the doc out and then get a second opinion.
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JimmieBell - I will definitely ask about the tumor markers during my appointment today. Thank you so much for the suggestion. Sometimes I feel so fuzzy, ever since chemo - just not quite the same when it comes to memory and information retrieval. I have so many questions and sometimes a few slip through the cracks. I'll add the TMs to the written list I'm taking in today.
The new liver lesion is recurrent breast cancer and it too is ER+.
Momine - thank you as ever. I'm always so glad to see your font. I am already on Tamoxifen. I need to add some things to my siggy. I see that you had your ovaries removed. May I ask what triggered your decision? I may have read it somewhere on the board before and can't remember.
So grateful to you both.
Kay
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My exchange surgery from TEs to Implants is scheduled for October 23rd. The day before I'm meeting with the Dermatologist to review a skin biopsy. I'd assumed it was a mole of some sort since I have several. This one though showed up within a few weeks. Between that and the BC, it had to be checked. I've just got a bad feeling.
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Hang in there GalSal.
The waiting in the worst. Sending you e-hugs and high hopes that you get good news.
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Sad news... I just learned that Marcia Strassman has died. She had ILC, stage IV at diagnosis in March 2007. God bless her and may she rest in peace.
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Lucky me I had 1 tumor ILC and 1 IDC. But so far i'm doing ok
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Thankfully, it's Basal Cell skin cancer. The exchange was done on this past Thursday and implants are in.
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So, I found out today that I am stage 4 with bone mets. I am heartbroken. I suspect I may have had this at diagnosis as I have had the back pain all along. I am thinking the Lobular didn't show on the CT or the bone scan. We are waiting for final bone marrow report and then my pet scan results to see what they recommend.0 -
jojo68,
So so sorry that you have been dx with mets. I have been told & read the 2 year mark is the most likely time to be dx with mets after a stage 3 dx.
My dx is stage 3, I did the aggressive chemo, radiation. I really do not have much confidence in it. Time will tell, but it is all a crap shoot.
My surgeon said mets would not show on a PET unless they were a certain size.
I hope that radiation or another tx will stop your mets.
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Jojo, I am very sorry. Typically, bone mets would show up on the scan, even lobular mets. It is possible that you had micro mets at initial DX. If they are very small, they are hard or even impossible to spot. My docs assumed the likelihood of such micro mets was really high in my case, and they used the 2-yr mark to assess if they had been successful in beating them back.
How low were your blood counts for them to order a marrow biopsy? Can they tell bone mets from that too?
Let us know what they recommend.
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I have Stage IIIa ILC ER+/PR+/HER2-, Grade 2 (right breast), BRCA1 -, BRCA2 -.
I was diagnosed 9/24/14 at the age of 45 and had a BMX on 10/24/14 with a 7.2cm removed along with sentinel nodes and axillary nodes removed. I had 3 of 15 lymph nodes that were removed test positive for cancer with one showing the walls had been breached. I had TE's placed at time of surgery and see my plastic surgeon once a week to get those filled until I reach the desired capacity.
I chose to have both breasts removed since I was a very heavy chested gal (DDD) and go with reconstruction. When the doctors removed both breasts they have the labs also check the "unaffected" side's tissue. In my case, I was told the left breast looked normal but had some changes starting, so I stopped cancer in it's tracks before it got a chance in the left breast to even start.
I have already had a bone scan and a CT scan of chest, abdomen, and pelvic which all came back clear but with the one lymph node wall being breached, chemo is recommended in case a cell or two, etc. are floating around in my body looking for a place to land and cause trouble.
I begin my chemo December 1st. I'll be taking AC (1 every 2 weeks for 4 treatments) then taxol (1 a week for 12 weeks). After that radiation (33 sessions I believe is what I was told). Then wait 3 to 6 months to complete my reconstruction with "gummy bear" inserts and start the hormone blocking pill Tamoxifen.
Today is my 46th birthday and I have taken control of this cancer not the other way around. I have had peace about it ever since I learned it was cancer. That doesn't mean I haven't cried, asked the "why me? or wondered the "What ifs?" Knowing that I will more than likely lose my hair with the chemo, I cut it pixie short last Sunday with the help of our home clippers and children. I will shave my head bald the day after my first chemo. I already have hats, scarves, and a wig to wear as well.
I am learning to Stay Calm. Be Strong. Fight Hard.
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LauraW68 - good for you for taking control. Wishing you strength, serenity.
Jojo - I am so sorry to hear about the mets. Sending you a big big hug.
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Hi LauraW68,
Our DX are very similar. You are at the beginning of a long year, but this time next year you will be enjoying a new life and hopefully some new hair! Best wishes to you!
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jojo, I'm so sorry to hear about your bone mets. I can say I know exactly how you feel, because I was diagnosed with bone mets last week. My world is just rocked in a way I was not ready for. My symptom was shoulder pain that I thought was bursitis. Ortho ordered an MRI, which was suspicious so he sent me to my oncologist. Bone scan and full body CT confirm it is bone mets, and I have the bone biopsy scheduled for Monday to get the hystology of the new tumor so we can set a treatment plan.
I made it 2 years and 9 months from my original diagnosis to mets. No way was I prepared for this, nor am I prepared to tell my kids.
Damn cancer
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Oh Dianne! Not you too. I am so sorry!
My girls are 6 and 7 so I will not be telling them unless I get really bad where they will notice. PLEASE choose to be sedated for your bone marrow biopsy. Worse pain of my life. The onc said it would feel like a toothache...HELL NO! OUCH!
I go back next week to find out marrow and ct results. I am worried about my lungs now as I cannot get rid of my cough. Now, everything seems to be a panic attack waiting to happen for me. Keep me posted! xo
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Dianne, I am so sorry. This stupid disease is sneaky and nasty.
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Dianne, ah, very sorry you have to deal with this. Not fair.
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Dianne and jojo, I'm so sorry. It's just not fair.
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Diana and Jojo, so sorry for you both. My thoughts and prayers are with you both... and your families as well.
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Thanks everyone. Telling my daughter went better than expected, and we are ready to get my treatment plan rolling!! I'm lucky that my kids are older now and are more resilient than I give them credit for. She just started her freshman year of college three hours away, and has all the typical stressful adjustments that go along with that transition into adulthood. It breaks my heart to add this stress, but we can do this. She was a sophomore in high school the first time I went through this, and that is when she decided to be an oncology nurse. She will make a great one!! My son is the "strong, silent" one, but he is doing much better this time around. Last time, he just denied it and wouldn't talk about it at all, but this time he has been very open helps me keep my spirits up.
It's been a tough week for our little family, but we are ready now to get the show on the road and get me back with NED!!!
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Thank you for posting this. I was diagnosed in September 2014. I had a 2.5 cm mass in my left breast with in situ areas starting. I chose to have a double masectomy Oct 20 2014. I was told I had stage 2 grade 2 invasive lobular carcenoma. Originally told they removed 4 lymph nodes, however, when finaly pathology came back only one turned out to be a lymph node the others were fibro nodules. My lymph node was benign, but still faced with the cancer. I am going on 4 wks post op. Still not sure if chemo is on the horizon. It was suggested by my oncologist to have a oncotype dx test done on my tissue that was removed to see where I am on a graph, this will help determine if chemo is necessary. I am struggling, because I feel I should be on something now, but my oncologist feels I have to wait till november 24th to get the results. If I am on the lower end of the scale she says no chemo but will be on tomoxifen for 10 years. I'm 46 and have a fiance who I adore, however, I've been reading all the side effects of tomoxifen and its scary, especially for me. I am just lost. I am healing from the bilateral masectomy, started reconstruction immediately from surgery, and get my first cc injection tomorrow. I am just struggling with my feelings, still feel shocked that this is happening to me. I want to live, I have two children 18 and 14 and I want to be around for them. Are these feelings I have normal from everyone who has had this? Will it get better? I'm having a hard time getting used to my chest that is numb, my arm pits that are numb, does this get better? I just want to feel normal again, but this is along road and I know alot of you have been there any advise
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Hi Funnthesun - Sorry to see you are here .. but you are well surrounded
I am not able to answer you on the masectomy questions - but I can answer you on the Tamoxifen / Oncotype situation - based solely on my experience (ie: start date).I had a lumpectomy on October 8 - waited for Oncotype till middle of November and it came back at 22%. After discussions with both my MO and RO at the time (I have since changed doctors & hospital), we opted not to do chemo. Again, this was my choice.
I had 4 weeks of radiation (Dec. 26 to Jan. 24) and I took a month off between radiation and Tamoxifen (started on Feb. 24). I just wanted to have a breather from anything cancer related - and I had also just started a new job.
I had minimal SEs at the beginning from Tamox - now I have nothing. The occasional warm flush - trying to stay asleep at night - and really heavy periods that seem to fly all over the map - is what I have now. But those could also be pre-menopausal issues mixing in with Tamox.
It is a scary thing Tamox, but it's doable. And if it doesn't work for you - you have the option to sit down with your onc and discuss it. Again, it will all depend on your own situation. Everyone is different and not everyone has SEs from it.
There are some good threads about Tamoxifen on here .. "Bottle of Tamoxifen" is one of them (think I have the name right).
Just breathe a little, relax and take the time to heal - everything will fall into place (answers, discussions, etc).
Just so you know, everything you are feeling is normal .. I was 45 at dx and I still look at my sons (23 and 20) and wonder .. is this it ? Am I done ? Am I safe now ? But then I look at them again and think "You know what, YES! I am done now .. I want to enjoy every moment and move forward". We can't predict the future - but all of us here have fought (and are still fighting) hard thus far - and I for one, will keep on fighting.
Also, try not to read too much (especially about Tamox) - I know it's easier said than done .. but here on bc.org you are well surrounded with tons of experiences and information ..
Warm hugs !
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Hi Funnthesun, sorry that you had to join this forum. I've been taking Tamoxifen for the past six months now and I honestly have to say that the only side effects I've had from it is the hot flushes that are bearable. I too was afraid when I first had to start it after reading all the scary side effects others were having with it but just keep in mind that everybody is different. Some get side effects and some don't. Hope it all goes well for you. This is such a wonderful forum and everyone on here are so helpful and supportive.0
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Just to add my thoughts about tamoxifen (and/or arimidex) and its perceived "scariness": for me, the scary thing was NOT taking it and facing a higher risk of recurrence. I'd rather risk side effects (and I have a few: but I embrace them as I believe they are telling me the medication is working) than death.
Effexor is wonderful for hot flashes. Heat and regular yoga are great for joint pain. Just my 10 c (adjusted for inflation).
Claire in AZ
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I haven't had too many problems with tamoxifen -- mostly hot flashes and some weight gain (that may go a bit beyond what happens in the kitchen, but I suspect the kitchen is 90% to blame). Like Claire, I'm too scared NOT to take tamoxifen (or arimidex when the time comes). One of my oncologists put it this way -- mets are treated with hormonal therapy. I'd rather take it now as a preventative measure.
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