Team ILC Warriors
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Hi, althea:
Good to see you again. I am still around, too. Congratulations on your 9th anniversary. As for me, my 8th anniversary also came and went. You are right: it is quite a journey! Keep taking care......
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Two anniversaries since BMX followed by AI for me
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Hi Everyone,
Looks like 1 year ago yesterday I started this thread. So much has happened in a year. When I see my old posts I almost cry for myself, I was petrified but so many of you made it so much more bearable. Thank you for that.
As of now I am about to schedule my DIEP. The hysterectomy was in Sept. and breasts still to dense to see anything so I have decided to stop looking over my shoulder waiting for this evil ILC to return. I already met with the PS and see the BS on 2/28. A year ago I would have thought it was a big deal, today I feel so calm about it and hope it brings me less worry. I am constantly amazed at how strong the women here on the boards are, I hope I can step up again and be so strong.
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lemon68, I just finished the DIEP procedures and I'm so happy. It is a big surgery but you can do it. Just be patient with your body's healing. The DIEP 2013 and DIEP 2014 have tons of good info and support. God bless.
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Hi Jeannie
I love to hear you did it and you are so happy!! I have been trying to get on here and read as much as I can, so many questions. Did it transform your body, I see in so many pics the results can be amazing. I love the idea of the tummy tuck along with getting rid of my time bombs!
thank you so much!
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I have been trying to wean myself breast cancer forum, but somehow there is no escaping.
I am 3.5 years since diagnosis and today I had my 6 month check up, which was no check up at all. My onc never orders scans, but today she told me that now she will not be ordering blood work and markers, as well. That, she said, was in accordance with the new national guidance. Needless to say, I thought I had no check up since listening to my chest/back and asking me how I felt amounted to nothing.
At the time I was diagnosed with stage III BC I felt great, except for this tiny fact that my breast was sort of flattened, the surgeon still couldn't feel anything while examining me. For over 5 years I was under the care of a breast cancer surgeon who ordered my mamograms and sonograms, examined me and gave me a false sense of security, while blaming everything on a cyst. Now, the follow up treatment will be even less.
How are any of you being monitored? I wonder if it is not a time to switch doctors, even if my doctor is supposed to be quite prominent in her field, dealing only with more advanced cases.
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ILC is slow to show up on scans because of the way it spreads. My stage IV showed up on tumor markers after 4 1/2 years. It's slow growing. Just saying! It's really scary stuff.
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Hi Danishgirl- looks like from your signature you did everything right and did it ALL. I am sorry you have to go though this again, its not fair. I know its a fear I carry with me everyday. I keep seeing women on the boards who had MX and then have a reoccurrence or a new primary.?? I thought only 1% of women end up with a reoccurrence or primary. Seems like more than they claim. I know we never know.. All the best you to.
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it is a very scary stuff and even more so if there are real doubts as to the course of treatment. I will insist on the tumor markers tests, and hope for the best. Otherwise there is no point to any check up visits.
I am usually keeping my composure, but today I've totally lost it, including my trust in my oncologist.
I am so sorry you moved to stage IV, Danishgirl. This is what we all fear, especially we who are stage III. How are you handling your treatment?
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I never bothered with any checkups beyond annual blood tests with my GP, not tumour markers though, from about the 3 year post ILC dx, I didn't want it to dictate my life and it didn't! Until it reared it's ugly head 3 months ago in my annual blood tests as deranged liver enzymes, which turned out to be liver mets, after over 9 years!
Retrospective advice for other ILC warriors (sorry if the term, Warrior offends anyone), I would add tumour markers to annual blood tests and perhaps a CT scan every 2 years without letting BC dominate your existence!
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antonia1 - It is scary and I can see how you feel like the rug has suddenly been pulled out from under you. I've been seeing my oncologist every 6 months and will have my 3-year appointment soon. I hope I don't get the same news. I never had any scans or X-rays except for DEXA in preparation for Arimidex therapy. I do have bloodwork done every 6 months, including CA-27.29, chem panel, Vit D, etc. Also a DEXA scan yearly now that I am in full blown osteoporosis (Arimidex) and on treatment for that.
A note about tumor marker CA 27.29. According to my MO she only does this because she is "old school" and doesn't want to miss the chance to catch something as early as possible. However, she told me the test is only reliable if it is positive. Positive usually means positive, but negative doesn't necessarily mean negative as there is a certain false negative rate.
I've seen my MO twice since this was published so I hope she is not quite ready to follow the guidelines yet:
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Fitzy, I have been told, we do not do that, to all tests. I think I will have a CBC, in 3 months, checking white blood count & such.
The theory now, at least in my cancer center, no scans, no tumor makers, ever, unless you are experiencing pain. My SIL paid for a full body scan out of pocket a few years ago.
How are you feeling? Don't worry about the terms, we can't know what bothers some, and not others. Let face it, we all would rather be visiting about something else, family, travel, life not cancer.
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Thanks. Good advise. I will follow it, with this onc or, more likely, a new one.
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Tina, thx for that link.....that is my MO to the tee ( or that is my MO, MO ). Lol
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Tina, my onc never did scans, but did markers and blood tests. This time she told me that she will basically do nothing, which in my view made the entire visit pointless. I was aware that the markers are not absolutely proving the existence or the non existence of mets, however, in the absence of better tests, at least the elevated markers lead to additional tests to rule out mets or catch them at relatively early stage.
If no diagnostic tests are to be performed, I fail to see any reason to call this totally unnecessary doctor's visit a check up.
I know I am venting, but I drove in bumper to bumper traffic, both ways, through potholes, waited an hour in a waiting room to be asked how I am doing and if I saw a dermatologist? We could have done this kind of 'visit' through an email or skipped altogether.
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Antonia, I don't blame you for being annoyed. Those guide lines have been discussed before here, in the context of stage 3 cancers. I completely get that you don't want to do a whole bunch of invasive and expensive tests without a good reason. However, I also find it slightly crazy to have the same exact guide line for follow up of stages 0-3. A full blood panel, for example, even without TMs, is not all that invasive or expensive, and an experienced doc can tell a lot from that. Ditto for ultrasounds.
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although I've just recently hit the two year mark, I see Onc every 3-4 months. after the first 12 months, BS is down to annually.
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Antonia, here in the UK there are no other tests than annual mammogram for follow up and some centres only do 2 yearly mammograms. A lot of hospitals operate "open access" follow up schemes or a follow up phone call from a breast care nurse, you only see the BC surgeon or onc if you experience any symptoms. There are no scans, bloods etc, unless you are symptomatic.
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Hi Lemon68, I tried to everything right, but I tend to put thing off and not complain too much which is not right. I really didn't educate myself about how sneaky ILC is and when I started having abdominal pain and regurgitation I mentioned it to my MO and also my internist. They both said I was due for a colonoscopy and should probably have an endoscopy as well. I didn't really follow up on it, and 1 1/2 years later my TM's started going up. Like Tina said, if they go up there is reason for alarm. I had a bone scan (neg) and a MRI that showed all the mets in my abdomen. The colonoscopy and endoscopy biopsy showed it was ILC.
Antonia, My MO said when I was originally diagnosed that I had had about a 65 % chance of it coming back. I also had IDC which added to my chances of reoccurrence. He now says on the top of a bell curve my life expectancy is 2 years. I'm quite sure that I will be part of the 50% who live past that. I had to ask him for statistics both times.
I think Fitzy is right, I would want tumor markers at least one a year and a CT scan at least every other year, probably depending on the grade of your original tumor.
I would definitely recommend following up on any pain or unusual symptoms.
Hugs to all. This is really scary stuff.
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I have tumor marker tests every six months but don´t thinkg they offer a lot of protection as mine were well within normal range when I had active stage 3 invasive cancer eg as close as two weeks before surgery.....so i don´t find them reassuring...............
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Lily55 - I have read this numerous times on the discussion threads as well as knowing someone personally whose tumor markers were within range when they were diagnosed with recurrence. So my thoughts initially were why do them at all if they don't help, but I see my MO's point. She says many oncs don't order them any more, but she still feels more comfortable using the markers. Sadly, she might miss the ones with false negative results, but if she can catch someone who comes through with a true positive while they are asymptomatic they have an earlier start on dealing with it.
Sorry you're having a rough go of it. Best wishes to you, Danishgirl66, and everyone else who is struggling right now.....
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Tina- I find it very interesting that they found additional areas after your mx. I seem to read that a lot in others posts, I wonder what the statistics are on us thinking we are clear/clean or as I call it my "good boob" and later after mx finding out that is not true. I will be having upcoming Diep and will be very interested in the findings. Do they always do pathology and do they always share it?
Danishgirl thank you for your advice, it is wise. I am glad they found it , may not have been soon but thank goodness it wasn't later either. Just doesn't seem fair, I know life isn't fair, blah blah blah! Hang in there and know we all care and are wishing you the best.
LILY-how are you? As always I smile when I see you here. You were here for me since the beginning! XO
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Danishgirl, there are so many things that tend to bother us after all that chemo, rads and AI that we tend to ignore them. Thank you for your advise. I will get the markers done.
Like you I believe in being an optimist and not giving up a fight to the end. I know you will beat the odds.
I wish you all the best.
Momine, those new guidelines show that they are mainly interested in limiting costs and admit no progress after throwing all those billions at cancer research. It also means that we must to be assertive in demanding tests and treatments. I will get the tumor markers, which I hope will be negative. If anything, the brave ladies here have taught me to be more in control of my treatment.
Lilly, they did your markers prior to your treatment? It was smart. At least you know that those tests don't work for.
I had my first tumor marker tests after completing chemo. So far they are normal.
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checked and do see that Onc does CA marker tests although they've been in line. i'm past due to go back for a follow-up appt. just hard to find time to get back in.
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Antonia, agreed. I just find it frustrating that they do not differentiate between stage 1 and stage 3. Probably the main aim is to save money, but at the same time, I do not want to expose myself to the anxiety and radiation from CT-scans, for example, if there really is no good reason to do them.
That said, my docs did and do way more than what the guide lines call for.
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I had my survivorship meeting yesterday with an oncology nurse practitioner.. She actually lives & works 2 hours away, in the big city, but comes to my cancer center for these appts.
She went over my case, dx, tx & aftercare. She stated & gave me a handout, no scans, no tumor makers, no MRIs.
It was a good appt., gave me time to ask ? and they push you to make goals for the future. I am pushing for a IV tx of Bisphosphonates in the next 6 months. I am not osteopenia but the San Antonio Breast Cancer Symposium was in favor of it. My MO said that it is not within protocol yet, insurance will not pay. I told her I will pay, and can we discuss it in May when I come back. Started Arimidex, having night sweats, fun never ends, eh'
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Holeinone, what is the benefit of bisphosphonate treatment.?
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Hi, this is my first post. I was diagnosed 12/27/13 with ILC. I had a lumpectomy and sentinel node biopsy on 1/17/14. My dr. got all the tumor and clear margins. All the nodes came back clear, too. I am so greatful that it was found early by a mammogram and the ultrasound and MRI confirmed the suspicious mass. I am going to start radiation therapy, soon. What I want to know is regarding the constant pain in my breast, the swelling and the numbness in the upper arm, armpit and breast. When does it go away, or does it ever get better. It's been 5 wks. since the surgery and the pain is just about the same. any answers. Thanks so much.
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Kat9273, get a referral for physical therapy NOW! It can help so, so much with the swelling issues and can ward off more serious annoyances down the road. Make sure the PT is certified in treating lymphedema and deals with breast cancer patients.
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Thanks, mommie. I saw my surgeon this week for a check up and he said there was no lymphedema. He also checked for fluid in the breast by needle aspiration and there was none. He said it would just take time for the pain and numbness to subside - could take weeks. I will definitely look into physical therapy.
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