Team ILC Warriors
Comments
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Momine, I love your approach! It doesn't matter what they tell me I have (ILC & non-Hodgkin's lymphoma), if I feel healthy today......I am going to enjoy it!
It's not denial, it's more a refusal to lose any good, healthy days to worry or anticipation.0 -
Kestrel, I figure there isn't a damned thing my worrying and fretting will accomplish, except ruin my day. Now, mind, I do not always achieve such wonderful calm, but I do try.
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Hello everyone, I thought that I would drop a line to encourage those still working through the start if their journey.
I am 2 years out from Dx and life has never been better. I just had my last surgery this last week with my bilat DIEP finished off with a new pair of nipples. I now feel physically finished.
Hair has grown back, though thinner thanks to AIs. Radiation tan is fading away.
Exercise and a healthy diet has shed 14kg that crept on over the last decade and pushed aside the fatigue & achy joints of AI therapy.
An emotional crisis saw me leave my PhD studies, endure a year of unemployment but now have a great new job that I love and is secure and well paid.
Our first holiday post dx is booked for October- a 3 week SE asia cruise!! First ever cruise!
On a clinical trial that requires yearly bone scan & CT- i just got the all clear for the 2nd year running now!!!!
After so many stormy days the marathon is over and the sun is shining again! I am just so grateful to have this second chance.
A lesson learned is to never take what I have for granted.....EVER!!!
And the most important thing is living in the here and now!!
Even if it the BC returns then I will have today to look back upon... And if I am lucky tomorrow... And the day after!! Those days will be what I make of them!!
((((Hugs)))) Robyn0 -
Robyn,
Thank you for posting such an awesome report! It is very encouraging to see that others have not only finished the race but have finished it well. I hope your cuise is even better than what your imagination and dreams have already imagined. You deserve it. This seems to be such a long emotional journey full of ups and downs full of loss and triumphs. Thank you for sharing a piece of your joy with us. I know I have just begun my journey but it already feels like lifetime as I have seen more doctors in the last 2 weeks than I have in the past 2 years. But I am choosing to fight the good fight, trying to see the silver linings and God's miracles along the way. Because there are already so many. Cancer has taken so much from me in such a short time, but I am blessed and I will not allow cancer or anyone/anything else steal any of the blessings that God has in store for me on this journey. All of you ladies are very open and giving of yourselves, sharing your stories and blessings and encouraging us as we begin, run or finish our race. I am grateful that you are all here filling the void that nobody else can possibly understand even if they wanted to. Thank you all!
Hugs to all of my new heroines and friends!
Mo0 -
Mo,
I had a blind biopsy and that is how they determined I had cancer after all scans came back clean. The reason I went to the BS in the first place was because I could feel a difference in the left breast from the right. It was chalked up to fiborous tissue and since the scans concurred with that assesment, I was sent on my way. Still I worried so they had me come back in 3 months instead of 6. When I came back the surgeon saw a difference and just did the biopsy. Once it was confirmed that it was cancer, the only scan that saw anything was a PET. Once we knew that the feeling in my breast was not fiborous tissue, we knew that it was large just by palpation (still didn't feel like a tumor though). That's the reason for chemo before, to shrink the tumor and the reason for mastecomy versus lumpectomy for me. Please don't apologize! Sharing our experiences is what we are here for!!!
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kar123
Thanks for this post I have been wondering about why mastectomy vrs lumpectomy for you, but didn't know how to ask delicately- I know that sometimes the tumor is shrunk before surgery, but sometimes it is not- I wonder what criteria makes that the decision.Is it just that each surgeon has their own treatment plan about how to proceed....was your cancer contained?
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Hi Sarajane,
Yes, in my case, chemo shrunk the tumor significantly (doesn't always happen with ILC, but I had a pretty good response). I still had one node with macro and one node with micrometastis out of the seven they removed, but otherwise clean margins. My tumor shrunk about 3.5 cm (estimated from pathology). As it was explained to me the chemo "swiss cheesed" it. So the tumor bed was estimated that way.
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You made a good choice IMHO, Momine. No ALH or LCIS in the "good" side but there was in the "bad" side. Would it have ever changed? Who knows. Then again, it happened once for me so why in the world wouldn't it again! Not that the "good" side was free and clear, just no lobular involvement at the time it was run through pathology.
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I had my first three month checkup after chemo and it was good. Phew.
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Yay Jeannie! Great news. Congratulations!!!
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Hi ladies. Its so good to hear from you. Welcome to those that found us. I am truly sorry that you have to be here but glad you found us. As we all have stories about how the tests didnt show our cancer like they do with IDC. I am still in shock 1 year later. I wanted to tell you that most technologist dont know that a particular cancer doesnt always show up. Most doctors probbly dont know that unless they specialize in breaast cncer. Unfortunately I dont trust my own field anymore. I still have this impending doom feeling. Im still in pain on my cancer side and it has been about 2 weeks since my exchange surgery. I am technically thru with all treatment except my Ai which I will take for 5 years and Im thru with surgery. I should be celebrating but I dont feel right. Before I felt my tumor I felt great and since I have had all this crap done to make me well I now feel sick. lol. Ironic. And the scans that they do and they come back and say well you beat it just ticks me off because I dont trusts them. I am a technologist and dont even trust my own scans. I almost feel like it is a waste of money but what other options do we have? It sometimes suck being in the 10% because no one knows much about it.
Anyway Dianarose, I am truly sorry about what you are going thru. My prayers go out to you. Please keep us informed.
Healing hugs to all0 -
Melmcbee,
I have been right where you are. It took me a little longer. At my two year anniversary I sunk into a rut. I felt like an 80 year old woman. My cancer side still hurt too and I started thinking maybe I shouldn't have had reconstruction. Not to mention I gained weight and hit and passed the benchmark for "I better get off my butt and do something weight". Between knowing that I would be on AI's for probably longer than 5 years and the uncertainty of recurrence or spread, I was a basket case while everyone was telling me I should be celebrating my cancerversary. I have since crawled out of the rut and got my butt off the couch and started to take care of myself again. I think I just needed that time to grieve what was and reconcile with what is.
You'll get through this too! As for the scans...I still can't trust them and I don't know what to do about that.
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Kar123- I am not a big truster of scans either. I almost want to not have anymore. I had a ct and a pet scan and both never showed the lobular in the ovary. Why go through the stress and injections of crap when they don't tend to work on lobular.
Jeannie- so happppppppy your 3 month checkup went well. Has your energy level improved? Are you looking forward to get the last phase of your reconstruction done? I know I don't miss how the TE's felt, but I think they filled the bra better and I had some cleavage with them.
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Diana, I am still tired but I'm probably fully anemic. I have been borderline anemic since high school. I don't seem to absorb iron supplements well so I'll probably get iron injections. sigh.
The iron and Vit. D labs are taking a few days so I don't have numbers yet. I have stopped Tamoxifen for six weeks because of the clotting risk and surgery coming up. We'll see if I get more energy. I'm nervous about stopping it for so long but will just put that out of my mind!
I feel like reconstruction is just starting because it's multiphase. I won't be done until next year. I will be happy to be rid of the TE's but I'm also happy I didn't have any complications with them and they've done their job. I'm not looking forward to pain and discomfort and trying to figure out pain meds that don't make me violently ill. But everyone says it's worth it!0 -
Regarding the CA-125 tumor markers, my MO told me at my recent visit that she is "old school" and still orders it even though it is only helpful if it is abnormal. According to her, an abnormal result is a true indicator that something is awry. The test is subject to false negative results so a normal result does not necessarily mean that all is well. So, she orders it on the off chance that she can catch something early if it comes back in the abnormal range.
I am also a big believer in listening to that little voice inside when it says that something isn't right. I fought for an MRI after growing tired of "normal" mammograms with my dense breast tissue - no family history, no palpable lumps. At MX pathology I had three fibroadenomas, one ILC, one DCIS, LCIS, and multiple ADH "sprinkled throughout the breast tissue". All in one breast, which my BS said is not unusual. Mammogram saw none of this, ultrasound saw three of the tumors, and MRI saw five. The rest was not seen on any imaging modality. I chose bilateral surgery and have never regretted my decision.
Best wishes to all!
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Just climbed out of a similar rut although for some reason it creeped up at 3+ years. Came over me like a heavy fog and as it lifted, learned that 2 friends had been diagnosed and another one was just diagnosed with metastatic to her liver and area around the liver.
I've always been so positive about my disease but these recent diagnosis of friends especially the metastatic has caught me so off guard.
Please keep Wanda, Bobbi and Jen in your prayers.
Heather
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Heather - I'm a big believer in prayer and positive energy. I will be sending both your way - and to your friends Wanda, Bobbi and Jen.
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Ok Ladies,
Here I go! I saw another set of surgeons on Tuesday for a 2nd opinion. Saw the BS in the am and was going to wait to meet the PS in the afternoon to choose which team I would be going with. Well I have to say that as I was checking out, it hit me why wait. I knew that I absolutely loved the new BS and already had a good feeling about the PS after talking with his scheduler when I made the appoinment. I just I'm good, I don't have to wait because I already know this is who I want to go with. God is so faithful! I have asked for clarity and validation on my decisions and he has done so through this entire process. I am so blessed! I met the PS and I have to tell that I loved him too! The exam felt kind of surreal and it took me a while to figure it out. The PS was kneeling in front of me staring at my breast just looking at them from all angles. It dawned on me that he was staring and looking at me like an artist would at his piece of clay just before beginning his masterpiece. I have to admit, it has given me something to anticipate. Now the crazy part is that I have now also had a ct, a bone scan and will be having a sentinel node biopsy on Tuesday prior to UMX/BMX (leaning toward BMX today) on July the 1st. Another crazy 2 weeks of appoinments and I still managed to put in 70 hours at work! Ct scan was good but have not heard on the bone scan yet. Claiming no news is good news on this one! I don't think I can accurately describe the peace that came over Tuesday night. My team is picked and they're awesome! Peace was short lived as the BC called the next day and asked if we had scheduled yet and that he'd talk tomher and have her call me. An hour later, everything was set. A little sad as it interfered with my plans to go to church camp with my 15 yr old who actually wanted me there this year...but God worked it out so thatni can go with them an ride back with someone who is coming back late Sunday night so I will back in time for my injection on Monday. Now I am eagerly waiting to get on a bus full of 7th & 8th grade students! Nothing like mass chaos and great worship to set things right! Life is so good!
Hugs to all!
Mo
P.S Now all I need is for God to help me decide a unilateral or a bilateral...0 -
Hmh, my thoughts and prayers are with you, your friends and everyones family. I pray for peace in all decisions and quick healing.
Mo Im glad God brought you the answers that you sought.
Healing hugs0 -
Hello Ladies,
I haven't posted on the boards in a very long time, but read my favorite threads most nights. Tomorrow will be 4 years to the day of my ILC diagnosis. Like many of you, my tumor went undetected on all previous annual mammograms. I was shocked it was 4 centimeters, and found it hard to believe they didn't see anything on the 2008 mammogram. I asked for all my records to be transferred to a different hospital. I was told they lost my 2008 film, and there was no other record of it.
I also had fibroids 11 years before BC. I know that fibroids are fueled by estrogen, as is ILC. I am curious how many others had fibroids before ILC diagnosis. I had a hysterectomy, but my ovaries were left in tact, and continued to produce estrogen. In hindsight, I wonder if I could have avoided BC if they had been removed.
Wishes for good health to all my fellow ILC warriors.
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Hi Ladies I am glad to find a forum for ILC, I was Dx on 5/31/13 with ILC, slow growing grade 1 ER+PR+ Her2- +1 and a 5/9 over something?????? On mammo tumor was 3 1/2 cm US 2cm ?? I am scheduled for B/L mastectomy on July 18th, I have felt a little adrift in the ocean due to our Dx being such a small% I would love to hear from anyone.
Thanks, Shary🎀0 -
Vanessa,
Congrats on the 4 year mark! Thanks for sharing it with us...it is encouraging to read about others who have walked this journey and are now on the other side. Interesting deduction on the fibroids. Sorry I can't deduce with you as I was not smart enough to have regular check ups so I don't know what I started with...dumb I know but thankful that my doctors were alert enough to find mine. Sono says 1.2cm, MRI can't see it, but BS thinks it is 2-4cms and so do I...I can feel it!
Shary,
Welcome, I'm so sorry you are feeling adrift, it is daunting to be so few in such a big sea. I too was diagnosed with ILC, my biopsy was on the 31st of May and confirmed on 6/4. I also will be having a bilateral on the 1st. Having a sentinel node biopsy this afternoon. A large amount of fear was lifted once I chose my surgeon and began implementing a plan for getting rid of this monster. I am blessed because God has been so faithful to show his guiding hand through my entire journey thus far and I can't tell you how comforting that has been for me...huge! I am so grateful that he is carrying me upon his healing wings of protection. So hope on board and we can ride together! Keeping you all in my prayers!
Love and hugs,
Molinda0 -
Shary, hang in. You've come to the right place. Ask away. Nice name, by the way, though I guess we spell it a bit differently. Molinda, sending you hugs, too.
Vanessa, I had a hysterectomy in 2008 for a huge fibroid, kept ovaries, then BC in 2010. (Since had an oopherectomy in 2011.) I also wonder about the relationship between fibroids and BC. I also have developed gallstones, which I understand can also be fed by estrogen. I should be at a pretty flat estrogen level by now with no ovaries and on Femara. I am having lots of SE's from the Femara and its hard to know if it's the drug or my body, completely not used to being without estrogen. I never had it tested, but I have a feeling I always had too much of the stuff. My Mom took DES when she was pregnant with me, and though I didn't have fertility problems, (am very grateful for this,) I had a uterus and cervix that had a specific 'DES' look. I will always wonder what all these hormones at such a young age did to my system. I try not to look backwards, but do wonder about all of this. Not much research on this that I can find...
Thanks, Shari
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Hi, looks like you just had your surgery on 5/30/13, how are you feeling? Did you have implants right away?
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Sorry that was for melmcbee😄
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Hi Shari. I had a bmx with tissue expander placement in July of 2012, May 2013 I had my exchange surgery to implants. I had tissue expanders in during chemo and radiation. I had to wait 3 months after radiation to get my exchange. It was a long year lol.
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Hi Ladies,
I had my sentinel node biopsy yesterday and waiting for results. Hoping that my ILC has not joined them...having bmx with te recontruction on Monday July 1st. I went to middle school church over the weekend and got my answer. I was taking a picture for a friend and while setting up the picture, it occurred to me that if for no other reason to do a bmx I need to be symmetrical I must have balance. I have other reasons as well, but in my mind there was doubt and I wanted clarity. God was so good to give me an answer and I am so thankful. I am filled with peace with all of the decisions I have been forced to make thus far and that is huge for me! I hate making decisions especially ones that are so life altering...0 -
Hi Mo, I can totally relate to that !!!!!!!!!!😄 Good luck with you surgery on Monday, I will send prayers of peace and healing to you and your family, I am having BLM with TE on 7/18. We are so many sisters strong, wouldn't it be fun if we could all meet up a year from now. Keep us posted and I would like to check in with you prior to Monday.
Shary🎀0 -
Hi Molinda (and my ILC sisters),
I just want to affirm your choice to have a BMX. I was given the option of a lumpectomy for the tumor that was seen on the mammogram (estimated to be about 1.5 cm) and confirmed by biopsy as ILC, a mastectomy for that breast or a bilateral mastectomy. My breast surgeon didn't try to push me in any direction, but she said that the likelihood of lobular carcinoma being found in the other breast was anywhere between 30% and 70%, depending on the study you read. I just wanted both breasts gone since I was wary of future monitoring finding any subsequent tumors in the other breast.
Through the hazy fog after surgery, I only remember my surgeon saying, "You sure made the right choice to have a bilateral mastectomy." My pathology report shows I had 3 invasive tumors in my "good" breast (nothing had shown up on the mammogram) and 2 invasive tumors in my other breast. My two biggest tumors were each 1.8 cm. There was also plenty of lobular carcinoma in situ in both breasts.
I also chose to have a radical hysterectomy a couple of months after the BMX. My tumors were 99% ER positive and 80% PR positive. I haven't had any significant side effects from the hysterectomy, just some vaginal dryness (I use Replens a couple of times per week to alleviate that). I started Femara a few weeks after my hysterectomy. I almost immediately developed carpal tunnel syndrome in both arms/hands when I went on Femara. I now wear wrist braces every night and they help a lot. My MO never said the carpel tunnel syndrome was a result of the Femara, but it was obvious to me.
I tend to err on the side of aggressive treatment. I saw a family practitioner for my steadily growing thyroid gland over a period of seven years. She sent me for 4 ultrasounds of my thyroid over those seven years. Each report said that it was a benign multinodular tumor. In the seventh year, I was so tired and had developed a chronic cough. I sought out a thyroid cancer specialist. Not only was the tumor not benign, it was Stage 4a. The cancer was well-spread throughout my throat, attached to my vocal cords, larynx, trachea, esophagus and 17 lymph nodes. Just getting that much cancer out resulted in problems (frozen vocal cords, loss of 3 of my 4 parathyroid glands and something called a high volume chyle leak that necessitated another surgery two days after the thyroid removal).
The upshot of all this is that I believe mammograms and ultrasounds can miss a lot. Doctors can also screw up. My family practitioner should have sent me for a needle biopsy of the thyroid as it began to grow. I trusted she knew what she was doing by sending me for ultrasounds only. It turns out that you have to have a needle biopsy to determine whether thyroid cancer is present.
Mo, I'm wishing you a quick recovery from Monday's surgery and good symmetry in your reconstruction. I think you will find great peace of mind in having chosen to do the BMX.
Julie
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Oh Julie,
Where were you two weeks ago? I know this decision had to be my own as I am the one that has to live with the outcome. But I sure could have used your wisdom earlier in this decision game. God has been faithfully by my side prodding me putting people's stories in my path. I had already decided which way to go but then I needed some simple validation. It's nice to know that others have had to make the same decisions and are happy and content with them. It gives me hope for the future. ?0
