Team ILC Warriors
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Hi ladies,
I saw my PS today and my nipple biopsies came back negative. What a relief! I can keep my nipples. I'm slowly mentally preparing for this surgery. Thank you for all the advice and concern.
Bikergirl, I was scared of chemo too, but I got two opinions from two separate onc. who both recommended it and recommended the same regime, I was on board. I realized I wanted to throw EVERYTHING and the kitchen sink at it first time around. I thought of chemo not as poison but as my weapon to use to protect myself and my future. Looking back I can see it was no walk in the park but I was able to work and have a life during chemo. My hair grew back pretty quickly. I have no lasting ill effects from chemo.
CDSCR--see above...I wanted everything I could get to knock out the bad stuff because of my positive nodes. I can't advise you, but I did get multiple opinions. You might want to talk to one more oncologist and then weigh your best options. In the end, it's your choice. Good luck.
Hugs,
Claire
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Hi Bikergirl, I just started chemo two weeks ago and took medical leave from work. I have two young kids so I wanted to save my energy for them, plus did not want to deal with the stress from work along with any side effects from treatment. Yes, it is scary, but we will get through it and hopefully inspire others.
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CDSCR, what is the RS score? I am not familiar with that term. What part of your DX is making you think that chemo is not useful/necessary?
Edited to add: Looked it up, and I see that RS stands for "recurrence score," and that it is another term for the oncotype test.
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I was very similar last year, i refused chemo and do not regret it.......no oncotype
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Hi,
So many different places we are all in, hope we can help each other.
CDSR, sorry, did you have the oncotype test done? I went to get three oncology opinions from three dif hospitals (wanted to be sure I wasn't seeing dif drs who all shared common dept philosophy) re whether or not I'd benefit from chemo. Oncotype came in at 17, and consensus was unanimous against having chemo. This consensus from such dif sources put my mind at ease as I was terrified to NOT have chemo. Had unimx, no rads, no chemo, oopherectomy, tamoxifen, now Femara. Am doing ok! My advice is to get as much help as possible w this decision. We just got BC; we didn't suddenly become drs.
Claire, re joint pain. I have had intermittent hip pain for a while. Of course, went nuts worrying each time. My GP gave me sage advice. Says if it gets better on its own it's likely not cancer. Cancer pain doesn't get better, it only gets worse. Why shouldn't we get sore joints like any other middle aged woman, especially after exercise. One of the really hard things for me about BC is that I lost the ability to brush aside small physical complaints. Now have to be diligent. Am trying to learn to balance diligence with calm, faith and sanity. Good luck w your op. I haven't had reconstruction yet, but the mx was a relatively minor recovery.
Love to you ladies, hang in,
Shari0 -
Shari, thank you for you kind words about aches and pains. I was never a hypochondriac--since I was little I'd bang myself up, fix myself up, and keep going. I dislike this new physically obsessive me. And my hip pain has pretty much gone away...without using ibuprofen or anything. I feel a twinge stepping down on my foot from time to time, but nothing like last week even. No pain when I'm not moving.
Sigh. Surgery tomorrow and I'm not worried about pain or anything like that--I more hate the idea of more strangers looking at my body, touching me, monitoring me, studying me....so sick of my boundaries being invaded. I remember feeling this way during chemo and wow, here it is again.
Claire
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Good luck Claire i get you re invasion i walked in to operating room for mynmx as cannot have pre meds and nurse behind me ( with a male technician in front of me) started pulling gown totally off leaving me stark naked all without a word to me! I grabbed a tiny sheet to hold over me........just no idea of dignity or respect!
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I hear ya, Claire! I did my double masectomy and Diep recon this year as well as revisions...hated to think about laying there completely naked for 8 hours...ugh. I also hated the drains after....But, you will be happy with the results! trust me. Take care and God Bless!
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Claire, just wanted you to know that I am thinking about you today and sending up prayers for you for tomorrow's surgery, I hope you are treating yourself good today in preperation. Keep us posted when you are able, I will follow anything you put on the surgery thread for July surgeries as well.
Shary🎀0 -
Molinda, I hope you're surgery went well yesterday. I want you to know that I'm still covering you in prayer.
Claire, I can totally relate to the "invasion of body" that has taken over with this disease. I hope you are treated with more respect tomorrow. You'll be in my thoughts and prayers.
Deb
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Hi Ladies,
I haven't been on the site in a while, and was thrilled to see this group. I know at least 10 women with BC but all had IDC, not ILC. Though treatment is similar some of the concerns are different, I think. Believe it or not, mine actually was caught via mammo - but 3D, not the more usual 2D (0.8cm on scan turned out to be 1.8cm after surgery). I think that made all the difference. I'm grateful it was caught early but am in the midst of a tense period right now. I had my 1-year follow up with my surgeon a couple of weeks ago and he found a pea-sized lump in the untreated breast; I'm only able to locate it occasionally, and it’s movable under pressure. I was already scheduled for MRI the following week, and he thought that would be helpful though normally he's not a fan of MRI. He wanted to see what the results were before making any further decisions – the one thing he did say was that if it was negative, he definitely wanted to see me again (this was expected to be my last visit with him).
Unfortunately, there was a scheduling snafu - when I arrived for the MRI, I wasn't on the list.
My onc is in the same hospital so I headed over to the office to find out what was going on...long story short, also told them about this new lump and she then ordered mammo and u/s; they fitted me in that afternoon. Results? Radiologist believes it to be normal breast tissue that is close to the surface of the skin. Hope so, but how to be sure? During u/s, they didn't see anything of interest in regard to this lump; however, they found some new suspicious areas they believe to be fibrosis. Yippee. So, I have a biopsy to sort that out next Monday. And there I was, thinking that the 1-year follow-up would be a breeze...silly me. I’m just hoping they’re right on both counts!This can be quite a rollercoaster ride sometimes.
I know I’m lucky overall. But I want to keep it that way, and so I look forward to your advice and input - plus, it's a relief to be able to talk with others who understand exactly what you're dealing with!
All the best,
Carol
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Molinda, sending prayers and healing vibes.
Claire also sendinf prayers and healing vibes.
Cdsr, I had a tumor that was thought to be 5cm but it turned out to be three tumors with the biggest at 2.9 cm. I had 8 positive nodes and I had a bmx then an axillary dissection. followed by chemo X6 A/C/T. Then radiation. I did not have an oncotype test and I cant remember if that was because I had positive nodes or what. I wasnt really told. that I had a choice with chemo. I was told I needed it.
Bikergirl, I work at a hospital and I tried to work during chemo but it didnt work for me. I went out on fmla on June 26th 2012 and I will be returning back full time July 18 2013. I think I might have worked part time for a few months in there somewhere but not much. My issues were pushing and pulling patients mostly then when you are on chemo you dont want to get near anyone infectious if your blood count goes low.
Healing hug to all.0 -
My Oncotype was 13 but because I had three nodes with macromets, I had chemo and rads after a BMX. There are different kinds of chemo. I had a "mild" kind --- CMF and the SE's weren't that bad, a little nausea, dry mouth, very tired. I didn't lose my the hair on my head because here in Seattle there is a protocol where you have infusions of the F and M every week and Cytoxin pills every day. I lost hair everywhere else, though!
I guess what I am saying is there are different chemotherapy regimens out there, some with worse side effects than others. I know several people who have worked through chemotherapy (and it is therapy, killing those cells!) but if you are a nurse with lowered blood counts, I'm not sure working around germs is a good idea.0 -
Mo, I know you just had your surgery yesterday but I want to send out blessings for healing and peace, I hope all went will for you and I am wishing you a speedy recovery.
Shary0 -
Carol, that sucks! I have decided that all of this is a completel rollercoaster crapshoot. The only thing that seems to really help is a sturdy sense of humor.
Here is to hoping your biopsies come out clean!
Claire, I hope you are recovering OK.
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Hi Carol, I am sorry you are going through all of this all over again, my tumor was also caught on mammo, still a size ? Mammo showed 3 1/2 cm and U/S showed 2 cm. my surgeon said we won't know for sure until he gets it out, I decided on BLM with reconstruction because of the sneaky little bas..... That ILC can be, some of my family members think that is a little extreme so I tell them learn about ILC and then you will get it!!!! Good luck with your Bx and please keep us posted.
Shary🎀0 -
Claire and Molinda - thinking of you both. Sending healing hugs and good vibes your way...
Kay
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Shary, even my onc thinks it was extreme to do the BMX. I just give him the death stare if he brings it up. Put your nuts in the mammo machine, buddy, then tell me ALL about it.
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Lol Momine. Now that is funny.
Claire and Molinda healing hugs coming your way. Hope all is well.
I had my 1 year visit with my mo today. I had good news. My tumor markers are in the normal range. Yeah. My cea has been elevated so if there is anything going on the arimidex is working. I just have to have a ct chest in one month to follow up nodules.
Healing hugs to all0 -
great news melmcbee! healing hugs to you too
kay
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Hello Ladies,
I am so thankful for your willingness to share your journeys for the benefit of others.
I am facing a decision - chemo or no chemo. I had 2 ILCs ( 2cm and 1cm), with chest muscle and skin invasion. No lymph node involvement, but a .1mm lymphatic invasion. Tumors were removed with clear margins and the affected chest muscle and skin were removed with the UMX. My onctype score is 18 , so borderline low/intermdiate. MO is recommending 4 treatments of TC. MO said risk of recurrence goes from 11% to 5% if I do the chemo with hormone therapy.
Mostly, I think: Do all I can to reduce the risk of recurrence. But a part of me is worried about long term or permanent side effects from chemo. that they might not be worth the 6% (approx.) benefit.
RO is not recommending radiation so that is not something I will have to do.
I know I can endure the 4 treatments, hard as they might be. You ladies have inspired and encouraged me in that regard. Any insight you can offer or if there are any questions I should be asking of my docs, this would be so greatly appreciated.
BTHO BC,
Sue0 -
There is a bigger benefit from daily exercise than from potentially toxic chemo - for 6% I would look at other ways to find a 6% survival benefit rather than a therapy that carries so many risks and if I understand you correctly you have a 94% chance of no recurrence with hormone therapy although I would read the info on here about relative risk versus absolute risk as statistics can be misleading
Good luck!!
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I can only speak for myself. I would do the chemo if it were me. I had Oncotype 13 with macromets in three nodes so my story is a little different. But I wanted to do everything I could. If it were your MO's family member would chemo be recommended?
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Hi everyone ... I had my BX June 20 and have had very little issues except for one drain clogging internally. I'm two weeks and a day post surgery and feeling pretty good. I went back to work Monday after been cleared to return 6 days post surgery. Next week I'll have all the prepatory appointments for chemotherapy: CT scan, echocardiogram, bone density test and port placement. Chemo will be 4 treatments of AC and then 12 weekly treatments of Taxol. I'll also have radiation following chemo and evetually reconstruction.
*hugs* to all and best wishes for a few side effects as possible.
Kelley
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Hello Ladies,
I'm one week after mastectomy of the left breast. As the pet scan and the MRI didn't show anything in the right breast, the surgeon didn't want to remove it. Maybe it's a mistake, but I have to live with this decision, so I have to believe that there is nothing in it. I'm waiting for the report now and then will have more chemo as fas as I know. That will be discussed with the onc later. I/m in the process of changing the hospital, so I have a lot to do next week. I have a question - when is the best time to start some exercise? I still have the drains in me....maybe I have to wait to have them removed.
Healing hugs to all,
Christina
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Jeannie57 - I will start my chemo tx on July 11th. I decided I had to do whatever I can to kill anything still lingering. And 1 day after deciding this, I do have peace with my decision.
I am focusing on the cancer cells that the chemo will destroy, not on the good cells it will kill.
Thanks!
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TxAgSueB, I'm glad you've made a decision and have peace with it. I always thought of it as chemo-therapy, stressing the therapy part.
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Hi warriors,
Surgery was uneventful--almost a non-event, after all the fear and prep-- and I even confused the nurses with my extremely rapid recovery. They didn't know what to do with me. I spent two nights in the hospital and came home yesterday, hubby and I took the dog for a walk right after. the worst part about the hospital was that they kept waking me up the night after surgery and I didn't sleep for 24 hours. I was so mad by the time my surgeon made the rounds, but he straightened out the unnecessary "bothering". The hospital, I guess, forgot that I had hired them and they were my employees; I wasn't there for THEIR benefit.
I guess because I'm so conditioned, I can use my arms just fine, can reach over and scratch my ear from the opposite hand, etc etc. Sleeping on a wedge pillow is helping but sleeping all night on my back makes my lower back and hips sore after about five hours. That's where I'm feeling any pain!
I've looked at my boobs and they look ... okay. The nipples look different--more pointed. My boobs stick out a lot more because they are swollen, and they feel so hard--like they did before I'd get my milk letdown when I was nursing my daughter. But they are the same size as before, which is what I wanted. I have two drains but they aren't producing much and I'm guessing I might have one taken out when I see my PS on Tuesday.
I'm taking tramadol and double motrin when needed.
Thanks for your caring and support. You are all so helpful I don't know what I would do without you...
ClaireinAZ
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ClairinAz, I am so glad and encouraged to hear of your swift come back after surgery 7/3, I had back surgery in 8/2005 and I was up walking to the bathroom by myself that evening. I have always been tough like that but I have to admit I am a little freaked out about my BLM with reconstruction on 7/18 I am experiencing more anxiety than I expected. I hope you continue to heal and feel well.
Shary🌻0 -
Shary, my delayed DIEP is on the 18th, too! I'm excited about getting these darn TE's out but nervous about the rest.
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