Team ILC Warriors
Comments
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Kim,
I am glad the results were good, but so sorry you had such a rough time with the puncture. That headache is bad enough when you're not in the midst of radiation. I wouldn't wish it on anyone.
My ob/gyn seems to be encouraging me to have everything yanked out. She says it will take uterine, ovarian and cervical cancers and screenings off the table. I am scheduling an appt with my favorite oncologist to ask her opinion. With the uncertainty about insurance after DH's layoff, I want to get as much done while still covered.
It's been a bit of a rough go around the house lately. Can't help but wonder when the sh!t storm will stop......and I am usually such a positive person.
Sigh.....0 -
I think its the time of year also at least for us northern gals. This cycle is horrible and good thing it was the last AC because I think they would have to drag me kicking and screaming to do another one. Im really hoping the taxol is easier on stomach. kestrulgrul.. it will stop.. head down and dig in
, for some stupid reason I am continuously picturing my old track coach and remembering all the things he used to say to me when I doubted myself. Keep picturing yourself done all this crappy treatment, picture yourself healthy and happy and giving cancer the finger ! Now to listen to my own advice.....0 -
Rdrunner, AC was the worst for me...like it sounds like it was for you. By comparison Taxol was so much better: no nausea, no hyperactive nose (I could smell everything on AC adding to my nausea), appetite quickly returned to normal. I felt so good after each weekly tx on Taxol my husband and dog and I went for a hike as soon as I was done. Giving C the finger like that felt good.
The only problem I encountered was that my white count dropped two far down one time for them to give me tx--I was delayed by a week, finishing. I had to get neupogen shots through the last half of my tx to keep my whites up, but the shots didn't bother me, and it helped me finish chemo. I do remember feeling kind of weird when my white count dropped as low as it was, once, but I kept working through it all--kind of ignored the melodramatic nurse who told me to stay home and wear a mask if I went out (I just shook my head at that...like I was going to do that!) she was such an alarmist I thought she was going to tell me I'd die if I exposed myself to the real world. Her attitude turned me off so much I just ignored her.
Taxol, for me, was a LOT easier.
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Glad to join your thread. I have a STRONG family history of BC, though no genetic link found yet. I am only 44. I had my mammogram in November and it was normal. I found out my insurance deductible was going up January 1 so I thought I better sneak in the recommended MRI before the end of the year. Had the MRI on New Years Eve. Found a small spot with a surrounding area of tiny dots. Biopsy said ILC. Surgeon was 90% sure only the small spot was cancer, stage one, surgery only. Opted for bilateral due to family history. Well, all those little dots were the tumor. Over 2in by 1in. And, it was in 5 of 10 lymph nodes. Stage IIIa. Now chemo and radiation. I am the youngest in my family diagnosed and the most advanced stage. I started chemo on Monday.
Thank goodness for modern technology and the MRI! Otherwise things would be much worse. So despite it all, I am grateful.0 -
Sandersmom, the thing you will find in many ILC stories is what you have experienced. ILC is usually never detected on a mammogram till it is huge, and the MRI and ultrasounds will pick it up. Sorry that yours is more involved than you anticipated, but your being proactive probably saved your life. Good luck with your chemo. It is a scary endevor, but you will make it through. They have great meds now to help with the side effects. Find a group on here that will be taking the same chemo as you are, and it helps to talk to others who are going through it at the same time as you are. It helped me. Hugs and Prayers coming your way.
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Sandersmom - I was one of the lucky ones - mine was picked up on mammo and still really small. But HER2, so chemo and herceptin was the treatment. Lobular is such a sneaky beast.
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Welcome to all those that have recently joined us. We are happy to have you here.
I like suzie was lucky, my mammo didnt find the ILC but did find the calcifications that lead to the ILC, LCIS and DCIS, so I am grateful for that. But do I trust them to detect any reoccurances? No way. Not even so sure I trust the MRI.
Suzie, so in 10/2009 they found the ILC and then a year later the IDC? Was it the same side? What treatment did you have for the ILC in 2009? You went through one of our worst fears, I am sorry you had to go through this twice.
Gail- thank you, you always make me feel better. Have you made a decision on doing the surgery? You have been though so much already. I am sure you are weighing the pros and cons. Does the CLL/SLL have any effect on this? I am sorry you are in a sh!t storm, its time to make it stop!! Like Claire, yelling into the sky! Your always so upbeat and active, do not let this get you not now, your too tough for that! I know the insurance thing is playing a major role and that is just not fair. Our medical decisions should have nothing to do with $$$, but they do. I know you will do what your gut tells you is the right thing. I am not doing anymore tests after last weekend. I have hit the breaking point for now. Just done being scared, poked, prodded, sliced, diced and cooked. 9 out of 16 done, I feel pretty good today and I plan on kicking some cancer ass tomorrow too!! God obviously thinks I am a hard ass so I am going to prove I am.
I am grateful daily for you all, You give me strength- much love- Kim
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As others have mentioned, the 2c tumor found in my right breast wasn't picked up by 5 so-called clear, yearly mammos. But for some reason that damned critter decided to move into 6/11 nodes, even though it was graded 1. Go figure.
Claire
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Kim,
No decision yet, but I have scheduled an appt with my favorite oncologist to discuss my options. I trust her implicitly.
The CLL/SLL really doesn't affect the BC treatment, except that I always have the potential for acceleration on my mind. It is truly a watch and wait situation. I try not to focus on it......too much. Thank goodness for Ativan! ;-)
I understand about being tested to death. It can wear a body down.
I am in a better place today. DH and I have formulated a plan, I got a good bike ride in today and my 6 y/o niece and my sister will be with us for Easter morning. I love hiding eggs!
Thank you for your support and positive thoughts.....it really makes a difference knowing I am not alone in this. :-)0 -
Kim - it was in the other side. When you look at my mammos from the previous year (when they found the ILC) you can see the IDC, but they didn't report it as it only showed on one view. But it was in exactly the same place on both mammos. I didn't need chemo for it luckily - clear nodes, but a type that often appears in lots of nodes. So we (the onc too) think that the chemo for the ILC kept the other one under control. I didn't go the BMX route as I hate surgery of any kind.
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I fought for 6 months for an MRI. I had no family history, "negative" mammogram, and nothing palpable. I was just tired of the mammo reports that read "No masses seen, but lesions may be obscured by extremely dense breast tissue." Neither my PCP nor my GYN could get insurance to approve so I finally went back to the breast surgeon who did a biopsy on me the year prior (ADH) and she finally got it approved. The MRI report even commented on the density of the tissue. Five abnormal areas were seen and biopsied (one ILC, one DCIS, three fibroadenomas). Although all in left breast I opted for bilateral surgery. I had multiple additional early lobular and ADH lesions that hadn't been seen on MRI. All in the same breast. So, no regrets for me that I chose bilateral surgery as I would have always been wondering what was next......
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Gail, never alone. Glad to hear your neice will be there for Easter morning, such fun to have a little one around. I did the baskets today, spent a fortune like it was Christmas and had fun doing it. Put it all on the back burner for tomorrow and enjoy Easter though the eyes of your neice.
This is my latest- I finally felt good yesterday! I got a call that my spinal fluid showed meningitis.. gram+bacilli.. Oddly enough if that were true I would be in some pretty bad shape right now and feel good again today. I swear the sh!t storm as some have called is never ending. They wanted me to go straight to ER, mind you the fluid was taken a week ago and I have no symptoms. There is no way I am doing the puncture again and going through the blood patch etc.. Called my MO and he had seen me in passing at rads in the morning he told me you do not have this, it had to have been contaminated, thats all I needed to hear. I know the symptoms and I am on alert but I would think it would have struck me by now. I have been reading posts for the last hour, so much of this goes on. False alarms causing so much stress, anxiety from waiting constantly for results. I am a firm beleiver in better safe than sorry in most aspects of my life. I am not so sure that is always the way to go with tests. The docs know once they mention something to us we have to know or it will just eat us up. I know I am ranting again as I did the other day but come on!! There has got to be a better way. Once we are DX Stage 1 or up why dont they give us all PET Scans,, rule out the scariest stuff immediately? Cost? Who cares what it costs and why does it cost so much for such a important test anyway? Why dont they have good stats on the different stages and what to expect as far as reoccurance or mets? Seems it would help everyone to relax a bit more if we had solid information. Just a thought, or rant... Happy Holidays to all of you. Enjoy your friends and family.
Love- xo
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Mind if I drag up a chair and join your group? I have credentials. DX ILC 1/30/13, with a bit of DCIS thrown in as a kicker. Opted for bilateral, which was done on 3/12/13. Returned for post op on 3/27/13, thinking I would get out the remaining staples, instead I was surprised to learn they didn't get clean margins, so I'm off to surgery again on, Tuesday 4/2/13. Hopefully they will get the margins I need, and use a bit of my thigh to put me back together. To say I'm bummed out would be a gross understatement!!!
My mom passed away 3 years ago from BC that was never found in her breast. It was found when her appendix ruptured, so I'm guessing she probably had ILC too.
This was a journey I never expected and would have probably ended up with the same fate as mom, had it not been for our dog, Miss Molly. In mid Dec. she began acting weird, she start following me every step I made and would whine and bark at me, something shes never done. Then I noticed that each time she jumped on me she placed her paw on one spot on my right breast and refused to move. Sure enough there was an odd thickening at that spot, my ILC.
I'm scared, trying to be brave for my family, but when no one is around all those frightening thoughts flood my mind.
So if you guys would allow me to join in I'd be most grateful.0 -
Gramwe,
As we all say, we're sorry you have to be here, but you are so welcome to join. That's an amazing story about your dog, Molly. I've read that some dogs can sniff out cancer. It sure sounds like Molly did.
What a drag to have to go back into surgery for the clean margins! When you say they may use a bit of your thigh to put you back together, do you mean you are also having reconstructive surgery on 4/2? I've heard they can do reconstruction using an inner thigh flap (TUG).
Lots of prayers heading your way for clean margins and a swift recovery after Tuesday's surgery.
Julie
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Thanks Julie. They will not be using my thigh for reconstruction, just grafting skin from my thigh so he can have a way to close the incision. Many, many years ago I got a tattoo on my thigh, so I'm thinking of telling him to transplant my rose on to my chest. I'll be the first tattoo transplant : ) I keep trying to find a bit of humor in this situation, but it's becoming difficult!
Molly is our hero. She continued her strange behavior until the day I came home from the hospital after the mastectomy. As soon as I walked in that day she sniffed me, laid down beside me and wagged her tail, shes my version of a PET scan.
I haven't seen an oncologist yet, so I stumbled across this site while looking for information. So very glad I'm not alone0 -
Gramwe, welcome and I hope you bought Molly a big steak or whatever treat she would like. That is amazing. Maybe instead of us doing our routine scans we will all go visit Molly and see what she picks up. lol. Can you see the headlines now? Dog replaces catscan.... To be honest with you I would trust Molly more than I trust these scans. At least I know she picked 1 case of ILC out. Healing hugs coming your way and please let us know how well you did after your surgery.
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Gram...what a wonderful "pet" scan you've got! I know how lucky I'd be if the cat I adopted a few months ago could do that too. It would be a "cat" scan. LMAO Truthfully, it does concern me at times that she wants to go to sleep with me while she's laying right on top of the scars. It's something that began a few months ago.
Suzie, Trail - I know just how incredibly fortunate I was that my ILC was found when it was still under 2cm, considering my breast tissue was incredibly dense. Although it was picked up by a regular annual screening mammogram, the US found additional multiple cysts. I feel it in my bones that had they not found it which precipitated the BMX I chose, what a drastically different treatment I'd have faced.
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Gram, welcome and good for Molly. One of my dogs can also sniff cancer. It is weird that.
Sorry to hear about the margins business. What a drag. Good thoughts for your surgery on Tuesday. Did you have node involvement?
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Welcome, gramwe -- sorry you have to be here, but you're in good company. Hooray for Molly! :-). I have heard stories like these but never from someone I "know." I too have a dog, a black lab named Sally. She's shy and not very demonstrative with her affection. But when I was in the phase of being tested and diagnosed, she would on occasion come over and rest her head on my lap (unusual for her). She was probably picking up on my worry and sadness. God bless our sweet animals (and us all)! xo
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gramwe- Welcome to the thread, Molly is certainly welcome also! How amazing, she is such a blessing to you and your family. Our dog loves my husband but through all of this he is glued to me like I have never seen. He is now 10, ignored me for the past 9.5 years and now I am tripping over him. I love him and he is the only one that knows all my inner feelings.
I am sorry you have to go back on Tuesday, hope this is the last time! Hoping today was a nice peaceful day for you.Kim
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Dear all, I wanted to drop in quickly and say I hadn't forgotten you and will post my naturopathic onc.'s protocol as soon as I hear from him. I think he's waiting for my last urinalysis (I just sent it in late last week) and he should be getting back to me to review what he suggests I should do and take for supplements soon.
Happy Easter
Claire
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Good evening, I hope everyone has enjoyed their Easter Sunday!
Welcome gramwe. Interesting "pet scan" story. You and Molly have a speacial bond. I have a big dog who was my "chemo angel". She watched over me and never left my side. She absolutly knew that I was not doing well. Well wishes to you for your upcoming sx hoping for clean and clear margins!!!
Lemon sorry to hear about all the frustration with the spinal fluid confusion. It is good that you are feeling better!
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Welcome Gramwe! Your story about Molly gave me goosebumps! Dogs are awesome creatures. Best of luck tomorrow! We will all be thinking of you. xx
Kim, I'm so sorry to hear about the frustrating results. I really hope it gets settled soon so you can have some real peace of mind. Sending you calming thoughts and love!
Hugs to all sisters near and far.
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Just popping in to say hello - I read up on chances of recurrence on this site and it says that 75% of women do NOT have a recurrence, kind of helps to keep our scare in perspective.....or at least it helped me!
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Thanks Lily for that info. Where did you find that at? Im not stressing about a reccurrence as much as I felt that it was gonna happen at some point. I could use some good uplifting links.
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I am worried about recurrence in my right one. I am checking everyday in the shower for anything weird. (I know, paranoid) Now I know what that dimple looked like on my left I am looking and feeling everyday. I hope all this chemo/rads/tamoxafin will shrink/kill anything left in me. But, If I have to do this again, I will. I am a fighter and I will find the strength. I plan on being a real pain in the ass to my doctors and insurance company about regular scans and MRI/US instead of just mammograms. I figure the cost of the MRI is far less than another surgery/chemo/rads, etc... again.
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Lily, the survival statistic you found is better than the one I did, so I will stick with yours, that is until I hopefully find a better one.
I read some last month's posts and had a good laugh -- is shaving pubic hair while driving replacing putting on mascara while driving?
Gramwe, hope you are doing well and the amazing Molly keep watching over you. and of cause we are here to support you.0 -
I just found this very interesting study on ILC and recurrence...In summary, If ILC recurs it will be after 5 years! And, tends to recur in stomach/rectum areas etc...Study recommends doctors start screening these areas for cancers as well to prevent mets!
http://www.jcancer.org/v03p0328.htm
As far as rate of recurrence...I found this quote that hit home with me...
"It doesn't matter what the statistics say, if it's one in a million and you're the "one", the rest is irrelevant."
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Yes but in hard to find places and with probable few months left only - what are symptoms of retro peritoneal mets for instance?or peritoneal?
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