Team ILC Warriors
Comments
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I was too on short term disabiity during both chemo and radiation. For me chemo was tough more of exhaustion and feel like being run over...everyone is different. rads were every day Mon-Fri like a job and exhausting for most of us and zaps you. Take care of yourself its just a job and life is so much more important. Resting is so important too. I went back to work now its been 3 mos. since rads but still get tired and have small stage lymphadema now too...so you always have time to work but take time for YOU! Love yourself enough to give yourself a break. We just keep going and tho its so tough it goes fast believe it or not. Enjoy life and keep movin
love all the Warriors we are strong women with tough days but we keep going.0 -
I have a pathology question that's been eating at me; was hoping someone here could help shed some light.
I understand what the T (tumor size), L (lymph nodes) M (mestastic) mean, but without a CT or Pet Scan how do they know to use MX or MO? One is no mestasis detected the other is unknown if mestasis is present. I had both show up on my path reports; is it maybe because zero lymph node involvement?
Thanks to anyone who may have an answer. I keep meaning to ask my oncologist but the question goes right out of my head when I'm in the office.
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Welcome SueinWa, we are an elite club are we not!!!!! Good for all of us for staying active, camped this weekend with family, took lots of walks, paddle boated and kayaked for the first time and I am Hooked😄Clair, hat's off to you this sneaky bastard we call ILC is relentless and that again makes me feel better about my choice to do BLM!!!!!!!!!!!! Nice to be home and catch up with everyone and now getting ready for surgery Thursday.
Shary🌻0 -
Good luck gavinsgrandmas. I think I have been to big pine isn't it near Death Valley.??.. Our car was running on fumes and we had to fuel up there. After risking life and limb in the valley
that was 20years ago!?!
Good luck for July 18th hope all goes smoothly for you0 -
Thank you Sue, yes we are near Death Valley, I personally have not been there I prefer the mountains to the desert but it is part of the historical part of our landscape here in the Eastern High Sierras🌞
Shary🌻0 -
Nancy, I am sorry. I don't know the answer to your question.
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Nancy i Found this on health central - not sure if it helps
"I did exhaustive research to find out what the difference between MX and MO. On John Hopkins site a woman ask the question. Lillie, the represenative from John Hopkins, said " MX means that the pathology department did not receive any tissue from other organs-therefore they can not comment on the metastic status - that's all MX means." On another site,of which I forgot to write down, the oncologist said that in time the MX will become MO depending on how the status of the patient changes. MX means by definition mets can not be measured or found."0 -
I am now agonising again as to whether to do mx on remaining side, my doctor and surgeon refused but i may ask plastic surgeon, i just cant decide......MRI showed nothing but.....
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Nancy & Lily,
Take a note book with all of your questions for the Dr's whichever they my may be. Better yet, if you have a friend who can go with you to ask your questions and write down the answers for your so you can focus on what Dr is saying, bring him/her. I have such a friend who comes with me and does this for me so we are not asking things later, she is also very quick on her feet and comes up with additional questions as they come to her which I have given her full license to do. She has been a godsend and a rock for me. Praying that you have someone to come along side you do the same for you!
Hugs and love from Texas
Melinda0 -
Hi Lilly,
I had my surgery back in April. I had ILPC in the right breast. Had 2 MRIs from 2 different radiology centers on the Left breast. The first showed 2 spots to biopsy when I changed my care to the University of Penn and they tried to biopsy the spots they weren't appearing on the MRI. They explained that sometimes breast tissue changes and spots can appear one time at be gone on the next imaging. They were very small to begin with.
Knowing how ILC is tricky and that I have had multiple biopsies before they found cancer I felt that I couldn't trust current imaging (for good reason) and went for a BMX. My breast surgeon and plastic surgeon were both good with the decision. After the surgery, I learned there was cancer in the left breast (DISC). It was not an easy decision, I didn't want to have more surgery then needed but at the same time I felt that ILC is hard to detect and since they couldn't biopsy the left I felt I wanted to avoid having to go through diagnosis and treatment again. In the end I had bilateral cancer.
I agree with Melinda, I took pages of questions to ask the doctors before each appointment. I would let them give me their POV and then go through my questions to make sure that everything i needed to know was answered. My DH went to every appointment with me, he is a medical writer and could ask great follow-up questions and take notes when I wasn't able digest all that was being said.
Good luck with your decision, I know it's hard.
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Thank you Robin,
I did ask all my questions but thy just sy no need, yet told me higher risk or ontra laterl, i am not sure how aware thy ar of the specifics for ILC, but i have no choice in Doctor0 -
Lily, I agonized over my BMX choice for a year. Since I had to wait till my skin was better post rads, I had lots of time to contemplate. My surgeon said I wasn't putting my life at risk in waiting for that length of time. My choice to go BMX even though MRIs, PETs etc. only found involvement in the right b. was made easier by this knowledge: my breasts are very, very dense, meaning I might not be lucky enough to find something in the future as I was the first time; I had positive nodes; and ILC can hide AND be multi-focal.
Since July 3 I have not regretted my choice, since the right breast was found to be clear (those rads must have worked!!!) but the LEFT one showed atypical hyperplasia and put me at higher risk should I have left it in. It's a hard choice but ultimately you have to make it and then have peace about it. I'm glad that I waited so I could think about it from a less emotional place than I was during chemo/ rads, etc. last year.
Gavinsgrandma: Are you, by any chance, near a little town named Quincy??? I spent some time there--twice--with my daughter a few years ago. Beautiful, beautiful places in the high Sierra!!!
Claire
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Claire, Good Morning no I think Quincy is more Northern Ca, we are right about in the middle, that is probably on the other side of The Sierras😄Hope you have a great day.
Shary🌻0 -
LILY, I opted for BMX as well since I have very dense breasts etc. About your surgery... I had a DIEP immediate recon and I think my breasts look awesome and so natural. I don't have any scars at all, either.0
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Joellelee,
I'm, so happy for you and your outcome. I did want to say that my PS said the we could start with plan A see if we're happy with outcome and if needed, we could go with plan, B, C etc.. until we were happy or until all viable options were exhausted. He also said insurance would cove it. I opted for a BMX with TE expanders and awaiting to see the artistry that my PS designs...
Remember to seek Gods will first and everythingnelse will fall into, place naturally...
Hug, loves and prayers!
Melinda0 -
THanks Joellelee, that is what i mean but i did not have immediate recon, they refused it as not available! So I will have minimum of two horizontal scars, top and bottom of where they slot in new tissue........and maybe three as existing scar is quite long and in difficult place......
I am worrying all the time now as just don´t know which way to go.....I thought i had decided!!!
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I am so sorry, lily, I hate making decisions like that...
I am sure you will make the best one and things will be fine...xxxoo
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Lily,
I am so so sorry! I know how difficult the decision roller coaster can be. The life changing decisions we are all faced with are extremely daunting and just plain piss us off! They change back and forth as quickly as the wind. Just get as many opinions on this sight as you are comfortable with, pray for guidance and clarity and God will be faithful and true to his word/promises. HE will give you the answers you are seeking as well as the peace that comes with knowing that he has your back just like all of the wonderful people on this site. Keep asking and listening and it will fall into place for you. Once I finally followed that advice, I was covered in a peace that surpassed all understanding of this world.
Love, hugs and prayers!
Melinda0 -
Hi Ladies!
Freaking out here...have a question about bone/spine mets with Lobular...
As you all know, I had double masec/recon this past January and am now on Dr. Wong's herbal protocol. I am feeling great except, my lower back and hip pain has gotten alot worse since my surgery. I did have a bone scan before my surgery and it was clear as well as a ct scan...BUT, we all know how Lobular may not show up! I have had progressive back pain since the birth of my girls 6 years ago...I was thinking it was due to my botched up epidurals. There are days here or there now that I have such sever lower back spasms that it brings me to my knees. I went to a chiropractor and it helped and icing makes it better. I am so scared. What do I do? Do I go for an MRI? How do we find Lobular mets to spine if this is what it is? Yikes.
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Go to a physio first, this sounds like a structural physical issue you can resolve, i know a lot about backs, if it was mets you would get no relief, but be prepared for weekly appointments for a few months to get right, mie took a year but i can do zumba now, not bad fom unable to walk!
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Thanks Lily!
I had been going to a chiro last year before my diagnosis and was much better, had to go twice weekly. It's a new chiro form where they don't manually adjust, it's all about re-programming the nerves to heal the body...it's called 'Torque release'.
So, you helped your back with physical therapy? Someone else had said here that bone mets would not show up as a 'sheet' in bones like it does in tissue with Lobular.
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Yes i had prolapsed discs, and almost worn out discs too, tried everything only good quality physio worked....but also have torsion twist, sometimes one leg .longer than the other etc
I understand lobular can be in lines too and not sheets......but key is if pain gets better and is not continuous then unlikely to be mets
Good luck0 -
Thanks, Lily!
So, it can hide in 'Lines' in bones...scary...I hate how sneaky it is. Another lady here said her Lobualr didn't show up in her ovaries either...so, what testing should we have done to try to stay ahead of mets?
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All i know of is circulating tumour cell tests.........and to get ovaries scanned every year, i was told if ovaries cannot be found its good as means there is no tumours.....
Every now and then it hits me. Esp as i have no appetite and very sore ribs all over n bc side......i think its post rads damage but.........0 -
Hi Lily, I have also heard the circulating tumor tests are very unreliable...And, there are some women here whose tumors in the ovaries did not show up on scans,...sigh. What do you mean that 'if they cannot find the ovaries'?
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Really? I know tumour marker tests are unreliable but circulating ones make sense to me as higher number surely means more likely a tumour may develop and they can measure those.....its the best I´ve got!! I heard someone on Tv say of someone else that the problem with cancer is people look so well when they are in fact dying of cancer, which did not cheer me up, this was said about a person who died a week later....!!!!.
Apparently ovaries shrink to really small post menopause so often cannot be seen on scanning equipment and if you can see them it may mean there is something wrong, mine could not be seen on scan or MRI with contrast!!!!
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Decision is made, I am having reduction and first fat transfer next month.......then I decide how I proceed beyond that depending on how the FT goes. Doing reduction first as I want to get what is removed biopsied as lobular is sooo sneaky and if there is any sign of it then I will get immediate recon done on that side after mx....thats my plan - am i mad? Or sensible? I am having to pay for this myself so have choice for once!
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Lily, sounds very sensible to me. Good luck with it. I am glad you found a path forward with this.
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Lily - those decisions are so tough. Sounds like you have a great plan - and a backup plan... which those of us battling lobular know is key. Good for you.
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Lily, Im glad you have decided and are moving ahead. Good luck.
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