Team ILC Warriors
Comments
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Socal, I think that with negative nodes (YAY!) you qualify for an oncotype test, so that would be something to ask.
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SoCalMom, I am impressed with how organized you are and how smart you are to reach out and ask questions. The women on this board have lots of experience. I didn't have my act nearly as together as you do, at the point that you're at. Good for you. Sounds like you got good path news, too.
Your situation sounds similar to mine. I had a mastectomy (left side) and then saw an onc. I didn't have immediate reconstruction (couldn't deal with more than just cancer at first. Too many decisions! Figured I'd always have time to focus on reconstruction, when and if I wanted to. In truth, I've not done it yet and not sure I ever will. My Dad was very sick for a year after I was and then he died. Just didn't want to have anything to do with hospitals for a while. I do ok with prostheses and my DH is cool with whatever I want to do. Maybe someday, maybe not. Love having a medical decision that is not an emergency.)
As Momine says, you'll probably want to insist on the oncotype test. This will help determine whether or not you'll need chemo. And you may want to speak about whether or not you'll be on anti-hormonal treatments afterwards. Since you had a mx, you may not need radiation either. Not sure if you've had genetic testing, but you may want to ask about that too, the BRCA test. Ask for reassurance, too, as you'll need to focus on what good news there is too, at times.
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Greenarch, like you I left the reconstruction for later (actually my surgeon asked me to wait 2 years, which was a bit shocking at the time), and then ended up feeling very much like you do about it. I still don't rule it out, but I seriously doubt I will ever bother, unless they come up with some fantastic and easy new technique.
It is interesting to me how many of us who ended up waiting on recon for whatever reason discover that the titless life really is not so bad. I wear small foobs most days, but sometimes I don't bother and I really feel fine about myself, my femininity, sexuality etc. I still have booty
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SoCalMom71 - Good to hear that those pesky drains are gone and that the ILC was smaller than anticipated! It's nice that you got in so soon with the oncologist. Off the top of my head:
Since the tumor was smaller than expected I would ask about radiation. You mentioned it previously, but perhaps that was when you still thought you were having lumpectomy???
Initial workups vary greatly. Ask about baseline PET, CT, bone scans, etc. Some MOs do them on all patients and other use them sparingly, if at all. I would ask for your MO's reasoning either way.
Since you are ER+ there will be discussion about hormone therapy. It probably will be recommended, but they'll need to present you with the pros and cons of different drugs, possible side effects, and whether any of the drugs should be ruled out based on any other medical history you may have. Different drugs are used depending if you are pre or post-menopausal.
The big discussion will likely be chemo. Oncotype DX is not the only test or statistical model that your MO can use to give you your statistics. I felt more comfortable having as much information as possible before making the chemo decision, but there could be a reason your MO will strongly recommend for or against chemo based on what is already known from your path report. But, I would at least ask about it. My MO didn't feel it necessary in my case, but when I requested it she seemed happy to oblige. Oncotype DX is expensive, requires insurance authorization, and takes several weeks to run (after the sometimes lengthy insurance auth process).
It's good if someone goes with you to those first few appointments as it will feel overwhelming. An extra set of ears is helpful!
Best wishes!!!
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Very glad to find this group! I'll give the Cliff Notes version:
Found an axillary lump that was mis-dx'd as an inflamed Lymphnode and given antibiotics. Dx didn't sit well with me. The next day I twisted my Ob/gyn's arm into ordering a sono. Abnormal, and biopsy followed. Although it came back malignant and strongly estogen marked, every test imaginable that followed did not indicate breast cancer. I spent 6 weeks searching for the primary in bones, brain, lungs, liver. As all else was rulled out, I was Dx'd with occult breast cancer, a dx that makes up 1 to 3% of all breast cancer dx's. Strangely, it was recommended that I have a lumpectomy to a 'suspicious' (although inconclusive) are of my breast and follow with radiation. I opted for BMX with nipple spare and expanders.
In the end, my new dx is grade III er/pr + stage IIa Invasive Lobular carcinoma and Ductal in situ.
I'm treating very agressivley:
BMX followed by 4 rounds AC then 4 rounds T both dose-dense; 5 weeks chest wall (kind of surprised this was reccomended)/ axillary radiation followed by 1 week boost to inscisions (everybody in radiation: DO THIS)
final reconstruction to follow. I think what i'm *currently* most surprised by is that this whole thing is going to take more than a year form when I found it, and that my prognosis, while put forth as shiny and good, is statistically not so supurlative concidering I was 45 at dx.
I am a pragmatist; My 'handle', Double-Trouble, is a nod to the fact that my son was born with stage IV Neuroblastoma, a nervous system cancer that can very rarely develop and metastisize in utero and yet today is a healthy 8-year-old. I intend to have the same outcome, and have trod this cancer road so hard and long there are ruts in it, yet will march on as we forced him to. I feel we'll both be winners (double-trouble, indeed) but, worn by reality, I can't help wonder if I (we) have been 'short-listed', ILC with positive nodes and vascular invasion being a shit-for-dx in the breast cancer world.
Any insight would be greatly appreciated. I see that there are myriad topics of disscussion but thought to begin here. lead and I will follow!
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Double-Trouble, hi! Sorry to welcome you to this place, but you'll find a smart supportive group of women here. Really doesn't seem fair that you're going down this ca road again, but your knowledge and experience may serve you well. Many of us were in our forties when diagnosed and have had the range of diagnoses, yet we are doing well. You are at the beginning of the road, and that's daunting, but breast cancer has a very clear well trod path. Once you're on schedule, it will take a long time, but you'll get through it. You have some good news in your story (the fact that all those body scans didn't find anything, that you're ER PR positive, etc.) I imagine it must have been horrendous to be caring for a helpless infant with a very rare cancer. Conversely, you are a strong, otherwise healthy woman, with a not so rare cancer. There are many women walking around with your dx, many years past. And as my amazing father once said (a 21 year survivor of a rare, deadly leukemia) you are not a statistic, you are unique. Don't read statistics and don't compare your case to anyone else's. I can go on and on. We all have our dark moments. This is a good place to come with them. It won't be easy, but you'll get through this. With love and good wishes, Shari
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Trouble, welcome! When they did the BMX did they find a tumor in your breast? Lobular cancer is a weirdo and can be really sneaky, which is why many of us opted for BMX.
Yes, it sucks and yes, the prognosis is not super-wonderful, even with aggressive treatment (which takes ages, as you have discovered). But, I was Dxed at age 47 and finished all the TX almost exactly two years ago. At this point, I feel really well, and I have been feeling well for quite a while, so I try to focus on that. In the end, that is all any of us have, the good stuff today, right now.
The things that really helped me through treatment were exercise, a good lymphedema therapist (my arm is now fine) and treats
I bought myself something nice after each chemo: new shoes, a beautiful notebook, perfume or whatever struck my fancy. I had fun with it (not usually a shopper).0 -
Momine, yes. What they found at surgery was diffuse multifocal cells throughout my breast, with one 1.2 cm. area massed in a sort of squishy 'flotilla', not an actual tumor. Nothing was palpable and nothing showed on mamogram (same day as my positive biopsy of the axilary lesion I found) and MRI showed what, in lieu of knowledge of the axillary tumor, would have been deemed dense breast tissue anomolies and likely ended the investigation.
Incidently, after the positive axillary biopsy and being sent to an oncologist, he couldnt even palpate the 2 cm. tumor under my arm. It was so high up and deep in the tissue he just couldn't, though I tried to help him by practically standing on my head. He said, ' well, you certainly are...are..." I said, 'crazy?" and he said, "More like, astute. I don't know how you ever found this."
Never underestimate your gut feeling and it's relevance to your care
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and, yes, when in doubt, take it all off.
annnnnd, thanks for sharing the fact taht you've had a relatively calm few years. That would be nice, and yours are encouraging. I particularly like that you treated yourself....good policy, and can scarcely be seen as indulgent.
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sgreenarch, point well-taken; ours is a 'garden variety' cancer, if one dare call any cancer such a thing. In that there is good company and good reasearch and reliable reason to hope. Your holding that up against my son's cancer shakes it into perspective. *Pasting to forhead* Thanks.
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Double Trouble, welcome. I have the same treatment plan as you. I started radiation today, and will be having boosts to incision. You are lucky you found your lump; I found mine too after years of mammograms missed it. You are right: go,with your gut!
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Not sure anyone answered Genny. Genny I was sent to meet the whole team right after dx - breast surgeon, oncologist and radiation oncologist. I later changed teams after a second opinion.
My dx was a lot like yours. I had a lumpectomy and mine was two different areas (near enough they could get both) although only one had a positive biopsy result. It's a call you will have to make (lumpectomy or mastectomy) and your surgeon will obviously have recommendations. Many people are having mastectomy to feel more certain of outcome later, it is true. It is also true that current research indicates very little difference in outcome for those of us with a low grade, low stage breast cancer whether we have mastectomy or lumpectomy. But it's good to try to familiarize yourself with the research so you can make the best decision for you.
The oncotype dx testing definitely helped me feel more confident about my choice to forego chemo and to have a lumpectomy but recurrences can happen anyway. I am hopeful that one of the side effects of the tamoxifen treatment (I am premenopausal still) will be to reduce the density in my breasts AND starve out any remaining precancerous growths that "could have" turned into something.
I hope you get the info you need in the next weeks, if you haven't already, to make your decisions and feel relatively good about them.
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Lemon, the Diep failed for me in the operating room due to extreme complications. Unfortunately, I kept throwing blood clots when the arteries would get connected. No one had noticed that a test ordered to be run in 2006 hadn't been which would have told them that I have a genetic blood mutation making me prone to blood clots. Mother's showed up will on Tamoxifen and her Mother had clot problems too.
I'm sure I'd have been happy with it, had it all worked out.
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Trouble, wow! I am so glad you found the sucker. In my experience, feeling-up talent varies a lot among docs. I picked my surgeon in part, because his physical exam was thorough and effective.
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Well ladies, thought I would chime in to the ILC gals! Hi! Count me in.
Trying to read all posts but there is quite a few, so hopping on the ILC train.
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All aboard, Trigeek.
smrlvr, how did your first radiation go today?
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jeannie57, I have expanders and will go into radiation probably sometime in June. I understand from a friend (and you've validated this) that they will be deflated to occomodate the beam. After several months of healing (like, 7), she had implants placed. She's not so happy with the result. I think betweeen the implant's firmer nature (than natural tissue) and the changes to her skin from rads, she feels it's all a bit too 'hard'. I'm going the implant route myself; meh.
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Double trouble, had my first two radiation treatments. They were quick and I feel fine so far. Thanks for asking! How are you doing with your chemo? How are you feeling?
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hi I was diagnosed August 2013 with what they thought was a 1.5cm tumour but it turned out to be a 9.6cm tumour - my mammogram was clear and the ultrasound only picked up a small part it. Because it can go to the other breast I decided to have a bilateral mastectomy.
DX is grade IIIa 1\26 nodes ER+ the other negative
Really good to read other people's stories about how they ok three years on - I've finished all treatment last week and feel positive :0)
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mbasford, welcome & congrats on finishing tx. I was done with rads a month ago. Still healing and adjusting to Arimidex.
Getting back to life is more difficult than I thought it would be, but I know we all will. Slow process. There are lots of knowledgeable ladies that post here...
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Yes it is hard it's never going to be the same, I have a 4 and 6 year old who keep me busy - I sometimes feel I was on a battleship surrounded by people fighting with me and then when treatments over you are on a dingy alone and told to go and find land :0) I am lucky that I have a very supportive husband and family around me.
I'm taking tamoxifen and am due to have zoladex injections too - I'm 40 and I know this will put me in menopause but I want to do everything I can to prevent the beast coming back.
Thanks for replying and good luck with everything xx
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Hi Mbasford0 and Welcome- I completely get what you are feeling. Its not just the body that needs to recover its also the mind. Did you do reconstruction? Menopause is no joy, sorry you are going to go though it early, me too but mine was surgical I didn't want to do the injections due to cysts. I finally know what a hot flash is... but if it keeps me healthy so be it.
Good luck with these next steps, enjoy your little ones.
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Double trouble, I've had my MO and RO docs feel a new lump under arm/upper breast of non-lumpectomy breast and they put me on antibiotics, too for infected node. Annual mammo and ultrasound in 3 weeks....any suggestions to get better diagnosis?
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Best thoughts for you Cozzoli!
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Cozzoli- have you ever requested a MRI? I think if you haven't had one of your 'good' side it could put your mind at ease. I insisted upon one before I did rads, I wanted to be sure or as sure as I could be there nothing lurking on the other side. It really made me feel better.
Just a suggestion.
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Genny: A lumpectomy after neo-adjuvant chemo will only remove the mass of ILC - but may not get all the stray foci or LCIS in other lobules in other quadrants of the breast. I had a double mx and glad I did because sure enough it was multi-focal even after neo. The LCIS and foci were never seen on any pet/cat/US or MRI before surgery - either before or during neo-adjuvant chemo. ILC just does not show clearly on scans- I can only say "mastectomy is the best option for ILC". If you are under 65 at diagnosis then I would never consider a lumpectomy! I certainly don't care for the fake boobs but having a better chance of survival without constant worry is worth so much more to me.
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Indeed. ILC and final path showed additional sites about to become LCIS, DCIS, and more. As soon as I heard, that I knew without a doubt I'd made the best choice with a bmx. ILC is just a different breed that doesn't play by the rules of other types.
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Annette and Galsal- I agree 100%. It took me a year to make my decision and I cannot wait to have my mx. I am so interested to see what will show in my pathology. ILC is too sneaky. I have spent a year wondering and I know I will always have some worry but the less tissue the better. Because of these boards and educating myself I was able to make a choice and I feel great about it. Thanks to both of you for sharing your opinions as they just make me feel good about mine. XO
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hmmm. I think it's a little bit of a sweeping statement to say that MX is the "best" way to handle ILC. It certainly depends on the size of the tumor. In my case I feel pretty confident that LX and rads was enough medicine, though time of course will tell. My team (at a Harvard teaching hospital) felt this was sufficient for my early stage presentation of ILC. My RO's opinion is that rads is especially effective against ILC due to the nature of its single-cell strand makeup. She said it responds very well, perhaps better than IDC.
I know this is an anecdote of one, but I recall when Claire in AZ from this thread had a BMX after lumpectomy and rads, she reported that the pathology in the treated breast came back clear.
This is not to diminish anyone's decision to opt for MX. It's a very personal choice. However, I will say that LX without rads is a bad idea.
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Hi all,
Re the above post--yep, my treated breast came back clear, but the "good" breast came back with hyperplasia--never seen or suspected on mammos, MRIs, US's, and hyperplasia apparently is more dangerous to our future than previously thought!
I'm so relieved I decided to get as much of that damned breast tissue away from the rest of my body as I could.
Claire in AZ
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