Terrified
Just got my diagnosed of invasive lobular carcinoma, estrogen receptor positive, Ki67-low. I felt a change in my breast and I could see a puckering in my breast so I scheduled my appointment. My last mammogram was in May 2013 and I was fine. I am 51 years old and just cannot stop worrying. We have a really strong family history of breast cancer. My grandmother, mother, sister and 2 aunts. One aunt passed because her cancer was so aggressive. I fear that will be me. I am so scared. This has been my biggest fear for as long as I can remember and now it is happening. How do you deal with the fear? I try to stay positive, it is the not knowing. I go for an MRI next week, then the Plastic surgeon, then back to my surgeon to make the final plans. I thought I wanted a double mastectomy, just take them off and have reconstruction, but now I am doubting even that. The more I read the more worried I get.
Comments
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Ktjay - Hi and welcome! So sorry that you've found yourself here, but just know what an incredible group of women (and men) are on these boards and that we all know - or can remember - just how you feel. First, take a breath... Better? Good! Now stay away from Dr. Google and all of his outdated terrifying information. I think you'll find the ladies on the ILC board very helpful:
http://community.breastcancer.org/forum/71
Look around BCO. There's information on just about every type of reconstruction (and it's current!) and the best support and information around. So go ahead, let it out, you're not alone and we care. Vent if you need to. No one judges. AND we're international so we're open 24/7! The very best of luck to you on your journey!
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Ktjay, I am so sorry that you have been diagnosed with this; it is always tremendously scary and especially so at first. It usually is easier for people after they have more information and have a treatment plan in place. There are some things that you should know - first, having ER+ cancer is a 'good' thing (as opposed to ER - ) this is because there are more options for treatment & the treatments are quite effective. Okay - second thing, don't compare yourself to your family members, your aunt had an aggressive cancer and I'm guessing she was diagnosed some time ago? Third thing, breast cancer that is confined to the breast can not kill you (because our breasts just aren't that important) and almost all BCs when found are confined to the breast and/or the breast and nearby lymph nodes. This means they are very treatable. Don't get too far ahead of yourself, i.e. on mastectomy etc. until you have more info about your specific case, and stay away from the evil Dr. Google (he is a very bad diagnostician).
That said, there is no way that you are not going to be scared and worried, there is nothing wrong with asking your doc for anxiety meds to help you get through this time period. And you get to be as selfish as you want, if you need to go shopping or out to lunch to distract yourself, do it. And you can come here and vent, cry, whatever you need. There will be someone here for you. Many, many hugs.
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ktjay, sorry you found yourself here. Good for you for making your appts. and getting checked. It is very scarey. To deal with the fear, I would have to suggest NOT doing: "the more I read the more worried I get."...some of the things you may read are out-dated and not always a good source of information. It sounds like things are moving quickly for you, so hopefully you won't have to wait long to get some answers regarding your treatment plan. For me, once I started my treatment, it was a relief to get things under way and feel like I was doing something positive. Surround yourself with positive people. You don't need to be picking someone else up and making them feel better right now. This is about you! When you go to the Dr's, take an emotionally stable person with you if you can and/or take a notepad/recorder to jot down answers to questions you might have and for a reference, bc you probably won't remember everything that was said. Get copies of your medical records as you go, in case you decide you want a second opinion or just need to know what's going on with your diagnosis. It can be over-whelming. Breathe, take walks, stay busy. Good luck with your up-coming appts. I think you will find this forum a great source of information, advice, hints, stories and inspiration. You have already started on the right track. You can do this!
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Ktjay -
Weighing in here. I too was diagnosed with invasive lobular carcinoma in September. This cancer typically does not show up on mammograms, so thank your lucky stars that you do self exams, noticed something different, and acted on it.
The best advice I received when I was diagnosed was "don't borrow trouble; go with what you know". Here is what you know:
- ILC is typically slow to grow
- ER positive, which means you should be a candidate for hormone therapy
- Ki67 score is low
- My oncologist told me ILC is NOT hereditary
Having the "C" word associated with you is never fun. But you have several reasons to be hopeful based on what "you know". I hope this eases some of your fear, as least a little.
I think this is the toughest time.... diagnosis, all the doctor appointments, all the decisions, all the tests. It's a whirlwind. The previous posters have provided great advice about having someone go with you to take notes, if nothing else. And stay off the internet....except here of course! So much contradicting information.
Best of luck. Keep us all posted on how you are doing. Don't hesitate to message me if you have questions specific to ILC. Also, be sure to check out the ILC forum.
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Thank you all for your advice, suggestions and strength. I feel so lucky I found this forum. I am sure I will have so many questions, fears, concerns and milestones to share as I move forward. I have started tamoxifen so hopefully that will stop the progression until I can get to see the Plastic Surgeon and then my surgeon. I am still unsure about reconstruction, but with my family history I know they would take care of the cancer in one breast and it would come back in the other so I have decided to just do a radical mastectomy with reconstruction. However, that being said now I am scared about my decision. Any advice with reconstruction?
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My grandmother, mother and cousin also had BC, none of them died from it and none seemed to have had lobular like me, so don´t rush in to any decisions based on your beliefs and family history it may not be genetic at all, just look at what is right for you and take your time there is no rush, most of us with ILC have been growing it for well over five years, often around 8......
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Ktjay - That's a tough one. There are so many choices with reconstruction, not the least of which is whether to do it or not. But it's all very personal and all about what you want and need. We can point you in the right direction if you give us an idea of what you're leaning toward - flap or implants, no recon, etc. - whatever it is, someone here on BCO has already been through it. Let us know, we're here to help!
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hello sweetie, take a breath and then try to calm down I and us here know what your are feeling, we have been there, I had my cry and then I prayed with Faith that I would be alright,I had tremendous support from family and friends, sisters who went with me when my Fiancee(at the time) couldn,t be there,I claimed my healing everyday and nite to GOD, and stayed POSITIVE, and HOPE is what got me thru all of this. I am now a 20 yr Survivor(Praise GOD) this yr, so hang in there and come back to us fo support. msphil (idc,stage2, 0/3 nodes, L mast chemo and rads and 5 yrs on tamoxifen) p s and was diagnosed while planning our wedding
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Thank you again, I have been saying that a lot lately
I am trying to stay positive, my job does not help whatsoever. I do medical transcription for a major hospital so I get all kinds of reports. I just keep telling myself that my story is my story, everyone's story is different. However, still have shear terror times. But I have a wonderful support system who has been through this and I just usually talk to one of them and they talk me back to reality. Plus it did not help that I can look at my records and pathology reports so I decided I was brave today and checked it out. UGH!! Anyway, okay back to boobs I was thinking of having flaps versus implants, I heard you get a tummy tuck with that one and that sounded good. New boobs and a tummy tuck, not bad I hope humor is okay on this forum, I am trying to keep mine and hopefully maybe make someone else smile. By the way, I am new to dealing with this, but you ladies have been dealing with it for awhile, my hat goes off to you and really appreciate the support. -
i understand what you're saying. but reading thru this forum really helped me see so many ladies here are still NED and being positive about their lives. that alone gave me so much encouragement. sometimes, it's the positive attitude really help us thru this tough part in our lives.
but you are entitled to have whatever emotional process you need to. we all are different and we do need some time to process and adjust. expect someone to learn the diagnosis and feel positive in a blink is unrealistic. cry, talk, sleep, do something to relieve that stress...and prepare yourself to face BC.
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Ktjay - Humor is most welcome around here!
I went the implant route simply because I'm one of those tall skinny wenches with no fat much of anywhere. (Not because I work at it but because I've always been that way.) I would have liked to go the flap route but it's a longer recovery and I wanted this done ASAP but that's just me. Try checking out the NOLA in September? thread - those girls discuss all kinds of flap procedures. Just introduce yourself and ask them some questions.
http://community.breastcancer.org/forum/44/topic/736412?page=863#post_3899800
I don't know what part of the country you're in but there's also a place in Charleston that everyone raves about as well - they're over here...
http://community.breastcancer.org/forum/44/topic/766866?page=113#post_3899612
Good luck to you!
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Okay, having a bad time of it again emotionally. I am on such a roller coaster, this not knowing, thinking the best, thinking the worst, trying to prepare, trying to plan, trying to make decisions I am not capable of making yet, talking to people who tell me horror stories, reading posts here, some helpful, some very scary. I am naturally a control freak and I can't control this, I feel so lost, scared and out of my element. I have read where stress can trigger cancer, well I am always stressed due to my life so then I started drinking wine at night now and then only to find out now that it increases your risk of BC. I exercise, I do yoga as much as I can to distress, I am not overweight, I eat greens as much as I can. Now I am afraid to eat food, it might make it worse. I am afraid to drink wine, it might make it worse. I am not giving up exercising, it at least helps. I am rambling I know, but I just need to get my words out. I want to scream. I have not done that yet. I want to cry. I have not done that yet. I want this to not be happening.
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Hi Ktjay,
I wanted to welcome you to this board and encourage you to do your research now as far reconstruction. Do a search here for people who have done the flap. You can even send them a private message and ask them about their experience. I am also 51 years old and was diagnosed last year. I hope you will find the strength to get through this. Please keep us posted.
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studies on exercise have proved it reduces breast cancer recurrence by 50 to 90% depending on what exercise you do so keep on exercising.
I think everyone feels like you at the beginning but within a few weeks you do get a handle on it. Have you read how to understand your pathology on this site? It helps.
Be kind to yourself
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Hi
5.5 years out from ILC lumpectomy, chemo and radiation-- -doing great!!! it is scary in the beginning-but as others have said, this is a slow growing thing--and ER+ is a good thing--I always tried to focus on the positives in my diagnosis when I started to go off the rails. I carried a little slip of paper in my pocket listing all the good things---turns out the only really bad thing was that I was diagnosed at all!!!
hang in there-come back often--come over to the ILC board too... you will get through this.....
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Thank you again ladies for your strength and encouragement.
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Hi ladies, well I still have not figured out how to use these forums, but I wanted to update you on what I have learned. I had my MRI and my ILC mass is 3.5 x 2 x 1 (or close to that), nothing else was seen. I am hoping that is good. I saw my plastic surgeon and I am going to have bilateral mastectomy with reconstruction right away with saline implants. Then I saw my surgeon and we decided to take my ovaries out at the same time. I am very nervous about all of this. I am hoping I am doing all I can to help prevent spread and recurrence. I am very nervous about the lymph nodes, but I am sure this is all normal. I keep trying to think positive thoughts, but sometimes those negative ones get through then I try to delete them.
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Hello I just joined to day and was just diagnosed but don't know the details yet on the type. I've had the MRI and biopsy and only know it is cancer. The doctor said today that the mass is large so I believe I have decided to have the mastectomy but can't decide whether or not to have both breasts removed to avoid new cancer in the other breast. I too am freaking out and don't like not being in control. I'm really worried about reconstruction because I have a 9 month old grandson and know the recovery is long. Any suggestions would be greatly appreciated on whether or not to remove both. I just turned 50 and so far it has not been good.
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Hi nanetteb, well I am new also so I will probably not be too much help, but I do understand your fears. I am 51 and I have decided to have a bilateral mastectomy. This fear is just more than I want down the road and if I remove them both maybe I can prevent further episodes. My mother had cancer, removed one breast than 14 years later she got cancer back in the other breast. For me it is a scary decision, but I am comfortable with it. I am also having my ovaries removed at the same time. I figure get it all done at once. I do know you are in the right place to get advice. This has been a great place for information.
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thank u for the information. Lots of decisions to make but it's good to hear from others going thru the same thing.
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Hi nanette,
I'm very sorry that you have been diagnosed. It's very scary to hear those words and at first you go through a roller coaster ride of emotions and trying to make decisions etc. Right now, with just the info you have, it's not time to make a decision on a lumpectomy or mastectomy. It may be that you don't get a choice, it maybe that they decide to do chemo first (depending on your type of BC which sometimes shrinks the tumor to a size where a lumpectomy is completely feasible.
Also, before you begin to decide on reconstruction, you'll see at least one plastic surgeon who will explain various options to you & you'll be able to think about recovery times.Before you get too involved with making decisions, you'll want to sit down with your surgeon (take somebody else with you to this appointment to take notes and also consider recording it) and find out exactly what you are dealing with. Breast Cancers are not all the same and you need to know whether you're dealing with DCIS, IDC. etc.
Many hugs. Please try to treat yourself really well this weekend. Good food, friends, etc. Nothing is going to happen between now and Monday, so it's a good time to just focus on you and each day.
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thank u for your kind words. Its very overwhelming. I plan to cherish every day and enjoy life to its fullest. I am fortunate to have a great husband, family and friends. Have a great weekend too!
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Ktjay - Just checking in on you to see how you're doing. So you sound calmer and comfortable with your decision about the BMX. As suggested above, research the hell out of your options for reconstruction. You have many options available to you. This is all a roller coaster, and a hard ride for a self-proclaimed control freak.
Try to take it easy on yourself and know that there's just some of this you simply can't control. Let us know how you're doing and if you have any questions. (((Hugs))) -
nanetteb - Hi and welcome to BCO. Yes, very overwhelming at first, but don't rush through things, take your time and read the information here on the BCO website until you have a full understanding of what you're up against and what your options are. Talk to your MO and your PS. Ask as many questions as you can think of. After all, they work for you! Once you have a treatment plan in place, it does get easier. And please don't use that evil Dr. Google - all you'll find is lots of outdated information and scare yourself senseless in the process. Stay in touch and let us know if you need any help. Sending you a big hug and a prayer....
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wow. Thank u so much for the support. I am so grateful for the comments and will get more info before I make decisions. Hugs and love to all.
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hello, after reading information on the site i have questions for you great people. My primary doctor referred me to a general surgeon who was very well versed on breast cancer and spent a lot of time with me. After speaking with my Aunt who had breast cancer she said i should get a 2nd opinion which i was already thinking about. We feel i should see an oncologist who specializes in breast cancer. I am a little confused because it appears that until they do surgery they do not know the extent of the cancer. What type of doctor did you all see and did you get second opinions and did insurance pay for the second opinion? thank you!
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AZ85048, thanks for thinking of my. I want to share a funny experience I had this weekend, hope to make you girls laugh. First, I am calmer, I am happy with my decisions, scared, but I feel I am doing the most that I can for my health and future and the rest is in the lords hands. I am trying, but still have those days. Anyway, I went away for a girls weekend with my best, dearest and oldest friends. I know them from childhood. Anyway, of course they were interested and had lots of questions. Well the one question they had was could they see it. So I whip out my breast and there in all my glory they are examining my boob, feeling the mass, looking what it looks like, and I had the opportunity to educate them, hands on, hahahaha. Only best friends can do that, and they were surprised at what it felt like and what it looked like and now they know to do a more thorough exam. However, it was really funny
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nanetteb - You are partially correct in your assumption, but not knowing exactly what your diagnosis is makes this a little tougher to answer. Quick back story: A radiologist suspected he saw
microcalcifications during my annual screening mammogram. I got called
back for a second diagnostic mammogram for verification. It was after that second one, that I got the call telling me that I needed to go see a surgeon. (A surgeon? Any surgeon?) I was lucky enough to know a doctor who just happens to specialize in breast surgery. That was very comforting to me. I'd been a patient of his years ago and he has since gone on to become a widely respected breast surgeon. We've remained in touch, so I didn't hesitate for one second to pick up the phone and make an appointment to see him. Even though he is a breast surgeon, he's one of those rare individuals that views surgery as a last resort. So after reviewing my films, he sent me off for a stereotactic biopsy (during which they diagnosed the multifocal DCIS, grade 3). Once I got that news, we decided to try an excisional biopsy. To everyone's surprise they also discovered LCIS and ALH during that surgery. That and the fact that the pathology report also showed extensive sclerosing adenosis, I opted for a BMX. I was given other options but the only one that made any sense to me was the BMX. My mother succumbed to breast cancer within five months of her diagnosis, so I knew that I wanted to do whatever I could to beat the beast. So I guess that wasn't so quick, but my point is that sometimes other things are found during surgery that never show up through conventional testing. And they won't know until they're in there. I'm not trying to scare you by any means, because mine was an odd case - hell, I had the whole BC encyclopedia of precancer symptoms inside me and that hardly ever happens. I never saw an oncologist, but I did use a breast surgeon. So go with your gut. A second opinion won't hurt and it may help you to make up your mind how you feel about doctor one as opposed to doctor two. Please let us know how it goes for you.... -
Ktjay - That is funny! But you just wait - once you've gone through the BMX, heck you'll lift your shirt up and show anybody! I think everyone in three counties have seen mine by now. I see posts all the time where we'll be discussing one thing or another and someone will confess that they just realized that they'd put their hand down their blouse to check - in the middle of work!
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AZ you make me smile! That is so funny! How we change after this.
It is going to take some time for me to get over feeling for the Dog Ear I just had removed. It had become a habit because it would sneak out over the side of my bra. I have been known to do a quick adjust of a foob too! LOL
I was about to answer Ktjay when I saw your post.
I belong to a great BC group here where I live and we meet once a month. Our numbers keep growing, unfortunately, or fortunately which ever way you see it. I hate that there are so many being Dx, but love meeting the new ladies.
Anyway, it isn't unusual for someone new to ask about prosthesis and there is a thump, thump, thump as a multitude of different prosthesis are removed and thumped on the table! It's quite an ice breaker! LOL
I have also been surprised at the number of people who have asked to see my scar, or to see what it is like to be unreconstructed. I don't have the slightest hesitation, but I would never, ever, flash my remaining boob. Funny isn't it?
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