Team ILC Warriors
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Hello all. I have never posted here before. Are you interested in the perspective of a stage IV ILC sister?
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Yes, absolutely !
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yes please JimmieBell
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Jimmibell, you shall be most welcome. Looks like your recurrence was a small, slow tumor. What kind of mets did/do you have?
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I'd love to hear your perspective jimmie!
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Yes, please, JimmieBell!
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Brace yourself, it's a long story!
For me this started in 2006 when I had a benign lump removed and the biopsy of surrounding tissue showed LCIS (Lobular Carcinoma in Situ). I find my current oncologist and she puts me on Tamoxifin for almost five years and watches carefully with six month mammograms. Nothing shows up.
In fall of 2012 I find another lump in the same breast (it only shows on sonogram) and have it biopsied on December 18th. It is infiltrating lobular carinoma. We are poor musicians, but I am approved for funding through Texas Medicaid for women with Breast and Ovarian Cancer, but they only pay for one scan. The bone scan is clear.
I have a double mastectomy on March 6, 2013. The lobular tumor in the left breast is 2.3 x 1.3 x 0.9 cm, HR&PR+, HER2-. But I'm glad I had both removed because the right has LCIS and Ductal. I plan on having reconstruction with DIEP so expanders are put in during surgery.
I have a baseline chest, abdomen & pelvis CT scan on April 11 before starting chemo, but when I go for my first treatment we find out that I have 2 liver tumors, 3.4 x 2.8 and 3.1 x 2.9 cm.
What a shock. I went from stage II to stage IV just like that.
I start on chemo the next week, a clinical trial with Paclitaxel and Avastin (Bevacizumab) given once a week for three weeks in a row then one week off.
Every scan after that shows reduction in tumor size. In June they measure 1.6 from 2.8, and 1.5 from 2.8. August they are 1.2 from 1.6, and 1.2 from 1.5. September they are 8 mm from 1.2 cm, and 1 from 1.2 cm. Until November in which they are too small to measure (under 1 cm each) and the comments say "STABLE SMALL HEPATIC LESIONS" which means I am stable.
I am given the option of taking a chemo break, but decide against it because the treatment is working so well I want to stay on it as long as possible. I know if I stop the clinical trial I cannot get back in. By the time of my next scan on January 3, 2014 I have had 10 rounds of chemo (4 weeks each) with a total of 28 infusions.
But this scan is different. It shows progression. One tumor is the same, the 8mm is now 2.4 x 1.8, and they see a new 8mm "possible" tumor. I am distraught, my family is terribly upset, it is just awful news. I have to leave the clinical trial right away so no more treatment, and we take a little time to think about the next move.
My Onc thinks I might benefit from interventional radiology and has me meet with the team at a local hosital. They keep saying they don't have all my scans, just June and January. This goes on for about a month. Twice we hand carried the CDs to them, but when I go for a biopsy they still can't find them. They look again, find and read. The IR doc comes back in, shows us the scans from April, November and January and explains that he sees no progression! He says I'm doing great and the tumors are too small for them to treat!! We go ahead and do the biopsy under concious sedation, and again he says he does not see progression with the sonogram.
As you can imagine, my fear and anxiety are through the roof. Taking a chemo break for 2 months in the face of progression is NOT the right thing to do. I can't stop imagining that the cancer (which had never grown so fast as to double in size before) is taking over my body while we are dithering about. I know we cannot do much for the first 4 weeks because the Avastin had to wear off, but every day after that is TORTURE! I become a blithering idiot. Cannot think clearly, or make decisions, or remember much.
Anyway I was at a peak of discomfort when we saw the IR doc the day of my biopsy, and it didn't happen right away, but I believed him when he said I had no progression. And in that moment of belief I was completely freed from all fear and anxiety. Free!!
So I thought about it, and what hit me is that there was nothing different in my body, or with the cancer. I had conciously chosen to believe good news, and that is what released me from my torture. So the take away for me is that maybe I can practice this, having experienced it once, and get better at moving more quickly to acceptance and peace. This realization has helped me every day since it happened, and the anxiety and fear remain at bay.
Although the hospital somehow destroyed my sample, it did not bother me at all. Everything is more manageable when we have active faith. They did see live cancer cells under the microscope before the samples were trashed, so I know it's still there.
Meanwhile, my oncologist believes in her radiologist's report and proceeds to find a new treatment for me. My clinical trial nurse has a sample of my original tumor sent for genetic typing from FoundationOne. The report shows that the cancer is mainly driven by a mutation of PIK3CA, and there is already an FDA approved drug for the mTor pathway (of which this is a part). So I started Afinitor + Aromisin February 28th.
Then I have a scan March 3, and when I see my Onc March 5th she said that the January CT report was WRONG! I never had progression. I have been stable for FOUR MONTHS, even though the last two included NO treatment!!
I had trouble getting up to full dose on the Afinitor and in June & July tried a stage II clinical trial for medicine that targets the mTor and Myc pathways called MLN0128. It kicked me to the curb. Really bad side effects and still had progression. So I went back on the Afinitor/Aromison combo and this time had no side effects at all. Go figure.
Just saw my onc on Friday and am happy to report tumor markers are down dramatically. About 30% less in just over a month. That means the chemo is working!
I'm so overwhelmed with gratitude, right now. It has been a long, twisted, bumpy, minefield of a road. But all in all I'm happy where I am. Very happy, and grateful.
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wow, how did you find out the pathways ? Thank you for posting, I have no knowledge of what you've been through so dont know what to say........take care and please stay in touch
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The pathways were found through genetic testing from Foundation One. There are lots of exciting new treatments out there that can be identified this way.
One thing I wanted to let y'all know is that I feel great. I've never had symptoms from the cancer - only the treatments. My husband and I perform his original songs as a duo, and I was able to play 3-4 nights a week all through IV chemo. Only that recent clinical trial slowed me down. We travel to music festivals in Texas 4-6 times a year. We just finished our first album and plan to travel more next year promoting it and playing house concerts and festivals.
Many doctors consider stage IV cancer to be a manageable disease. No cure does not mean no life.
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JimmieBell, as a recently dx stage 3c ILC whose 4 months of chemo was reported as "ineffective" I'm still at the point where my brain is constantly saying cancer..cancer..cancer. I'm recovering from BMX and hoping that just as soon as I get done with rads I can move on instead of waiting for the next shoe to drop. Your story is very inspiring and I thank you.
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Jimmie, thanks for writing out your story. With all the hype lately about how prophylactic, contralateral mastectomy is useless etc, I am once again struck by how often that simply isn't true when dealing with ILC. I too, and many other women here, found LCIS in a supposedly healthy breast.
Most of all though, I am just thrilled that you are doing so well and that treatment so far has been reasonably kind to you and so effective.
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I had LCIS in my "good" breast after MRI, CT and mamm said negative. So glad I went with bilat, and my original MO wanted me to have a lumpectomy!. So glad I did my research and listened to my gut. Luckily my surgeon agreed with me.
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I wrote about my experience in the LCIS forum topic Prophylactic Mastectomy for LCIS on 10/13/13. Hope it helped someone.
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They found ILC in my "good breast" after BMX, when MRI, u/s, mammos, scans said all okay with my "good breast".
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I had a lumpectomy after MRI and biopsy detected ILC in my right breast (mammogram said it was 1.8, MRI said it was 2.5 but when they took it out is was 3.5). Nothing was picked up in other breast. I have my 1 year anniversary MRI booked for next February and I am very nervous already. I could have had a mastectomy but I thought I would give myself 1 chance and my medical team thought the same. It's also given me to time to get my head around the fact that I will probably end up having to have a double mastectomy. I'm even saving my holidays from my job in case I have to take 3/4 weeks off work. I would be very interested in hearing if there are many ladies who have had ILC and had a lumpectomy and haven't had a recurrence. Some positive stories would be nice.
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I too had a lumpectomy after the surgeon talked me into it. I wish I had known then what I know know about ILC. I was very big-breasted, about an E cup. The surgeon said she took out about 2 kg of breast tissue between both breasts (I had a lumpectomy on the affected side and a reduction on the other) and all of it tested negative to anything else. Still I do get a bit nervous when I read so many stories about how this beast presents itself. I agree Fizzdon52, it would be nice to hear from some long term ILC ladies who had a lumpectomy without reoccurrence.
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JimmieBell, thank you so, so much for sharing your story with us. There are so many things you wrote that I want to commit to memory, especially how your ability to handle your fear and anxiety evolved. Again, thank you for showing us a way to walk the road you're on.
As an aside, I'm also very glad to know that the Afinitor+Aromasin combo is working well for you! I'm on a clinical trial of either Afinitor or a placebo in combo with hormone therapy to see if the combo can help prevent recurrence. (We don't know for sure, but my lab work indicates I probably got Afinitor.) My MO said studies have shown it is highly effective in Stage IV gals...I'm glad to know you're one of them!
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Jimmie, thanks for your post. Reminds me of when the mamo center lost my mammography report. From now on I track my tests and records that are sent by phoning the place they left. Get names and then phone the place they are going to saying that my scans are coming. Then phone and ask if they have come yet. Dang why are we having to do their jobs without pay:)
Good story here and hope for all.
My dense breasts had a stage 3 hockey puck size cancer that broke into the chest wall. Onc treated it aggressively. 6 months chemo and the most rads and boosts you could get then. I had double mast for peace of mind which was wise because they found small cancerous activity in the left breast that they didn't know about. Double mast may be warranted for us lobular girls. It is something heavy to think about though.
Even though the surgeon had a hard time getting clear margins I am alive and kicking since 2004.
So glad I had the dble mast. That bc is so sneaky because mine grew in files and not really a defined lump, All the mammo test interpreters just concluded that I had dense breast. Not so. Invasive lobular was hiding in the dense tissue. Docs figure that I had been walking around with that lump for probably ten years before diagnosis. That would have made me in my early thirties raising a newborn. I have seen my kid grow up into a mature adult, which I never thought I would. There is silver lining in the clouds.
Thinking of you all. This stuff can be too overwhelming if we say a bunch of "what ifs". I did this initially and it just created major stress. Like Jimmie if I get my cancer back I will try to take one day at a time and try to go with the flow. You noticed I said TRY!, I may not be overly successful though but I will try for sure. It's just not worth getting fuzzed up about cancer because it then not only takes you physically but emotionally to.
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Hugz, thanks so much for posting.
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I read extensively about Lobular before my op. Up until a few years ago mastectomy was normal procedure for those of us with Lobular because of the nature of it. However this seems to have changed a bit. I read that those who have lumpectomy have just a good a chance of survival as those who have mastectomy. I think it is very much a personal choice. Also the size of the breast can have a bit to do with it. If you have large breasts like me (36DD) the outcome can be better as there is more tissue to work with. The doctor removed a golf ball sized lump from my breast and you can hardly tell, there is a slight difference in size but very minimal. If I do get it in the other breast I will have a matching pair again. I tell myself next time I will have a mastectomy but know deep down inside if I do get it in my good breast, I will give that one a chance also, and opt for a lumpectomy. Something else I can't help wondering is if you do still have cancer floating around in your body after all your procedures, wouldn't it be better that it presents itself in whatever breast tissue you have left, rather than going somewhere else? Plus with the nature of Lobular, if it does go somewhere else in your body with it's long tentacle like presentation, does that means it's also nearly impossible to find? I must ask my Oncologists next time I see them.
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hello, I am ILC stage IV mets to 70% of my bones. I was Dx at 38 and I'm now 44. I've gone through all of the Tamoxifen, Arimedex, Faslodex & Famara and I've now been on Taxol since January of 2012. I've had radiation on both of my hips (inner and outer) upper spine, lower spine and also my right shoulder. I've lost my hair 4 times in the past 2 1/2 years. Every time it starts growing at a decent rate, it falls out.
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Txtam, blech! You must be quite the trooper. Is there some identifiable reason (BRCA, known environmental exposure etc) for you being hit with this #$%&* so young?
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This thread seems to be less popular so I am hoping someone reads this.....
HAving had another fat transfer done a month ago my axilla area now hurts quite a lot off and on and I am sore all around the collar bone on that side too yet the fat did not go anyone near those two places...........I am thinking I am close to the stage when something else may show up (2 years post rads) and its getting in my way......and I know supra clavicular is a favourite area for local recurrence, I so wish I had not had rads........
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Lily, if you are concerned, see if you can get an ultrasound. However, it seems to me that the fat transfer could cause the discomfort you are experiencing.
I know you regret having rads, but the rads are meant to prevent local recurrence.
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i know Momine but they also increase the chance of future recurrence and they left me sooo damaged
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Lily, are you sure that is correct? I know there has been a lot of conflicting info on rads, but in my imperfect memory the last few things I saw pointed to an overall advantage, especially in stage 3.
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My understanding is rads may well kill stray cells at that time but they make it more likely you will grow new ones a few years down the line.........
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Lily55 I don't know where you got that information from. In fact I think you will find it is just the opposite. Having rads after lumpectomy or mastectomy greatly reduces the change of recurrence. Otherwise none of us would have had rads?
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the info is there in reputable articles, I will try and find the links.
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Lily, I don't think that it is that it makes later recurrence more likely, it is that it may in some cases contribute to a late recurrence, if that makes sense.
It is a little bit, I imagine, like chemo that will reduce your overall risk of mortality and risk, but may also cause a nasty leukemia. The chance of the nasty leukemia is very small, whereas the overall survival benefit (in a case like mine) is large.
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