Hoping I did not wait too long

Ktjay

I was diagnosed with ILC on February 7, 2014.  I can't believe it.  I have such a family history of breast cancer, I go every year and get a mammogram.  I started feeling a soreness in my breast with a thickness at a fibroid area that I have.  I kept checking to see if there were changes, but I waited probably 3 months till I got to the doctor.  My mother was diagnosed with breast cancer and that made me more diligent in checking monthly, but I kept saying that it was okay, there is no real "lump" and it shouldn't hurt.  PLus I was dealing with her mastectomy and her treatment.  Well I finally lifted up my arms and saw the dimpling and new right away I had cancer.  I called the doctor the very next day but due to weather and his schedule I could not get in for 3 weeks.  I am so scared that I waited to long.  I had a MRI and that did not show anything other than the mass that is about 3.5 x 2 x 1. They have put me on tamoxifen while I wait for my surgery. I have decided to undergo a bilateral mastectomy with reconstruction and I am also having my ovaries removed at the same time.  I am trying to deal with the fear, but there are days I just keep kicking myself that I should have gone as soon as I felt something was wrong. 

kar123

Please don't beat yourself up! ILC can fool even the most experienced of doctors and the best imaging technology.  To make a long story short, I had similar symptoms to you including a slightly inverted nipple. I waited a month or 2 (like we are instructed to see if it was hormonal). Once I went to the doctor, even though they all felt and saw what I was seeing and feeling, they still didn't do anything since all the imaging came  back clear. Even MRI. They gave me the come back in 3 months speech. Only when I came back did they agree a biopsy should be done.  Tamoxifen and Aromatase Inhibitors are effective tools against ILC.  There is some debate about chemo, but chemo worked well for me.  So sorry you had to join  this club!  You will get  through this and there  are a lot of women here to help you on your way!

Lojo

I agree with kar123, don't look back at should haves. I also have family history, dense breasts and had clean mammograms, so wasn't worried by my lumpy boobs. Have you had the BRCA test? I would think this might inform your oophorectomy decision...how old are you?

They had me on tamoxifen for the interval between surgery and rads while I waited for my oncotype. Do weigh your options carefully...is a lumpectomy out of the question? I know it's hard, but try not to worry in this time between...it's the worst part of the whole thing...and it will get better. I felt a tremendous sense of relief after surgery but then had a lot of anxiety while waiting for my oncotype. I'm doing rads now, and while not fun and sort of irritating, I'm much calmer.

Ktjay

It is so nice to talk to you girls who are going thru this.  I am sorry we have to meet this way, but very glad you are here.  I am 51 years old.  I did have genetic testing done and I am not BRCA 1 or 2; HOWEVER, we have a variant.  My grandmother had BC, my 2 aunts (one of which passed from it), my mother and my sister.  My grandmother, living aunt and mother all have mastectomies.  My aunt and mom did not get bilateral, they had their cancer 14 years apart; both of them.  My sister had radiation and a partial mastectomy.  She is 12 years cancer free so far.  I made my decision because my mom just had her second mastectomy in December and knowing she went 14 years from her fist diagnosis and knowing that ILC jumps from breast to breast, I just made a decision to go big  My mom also had a preventative hysterectomy so I had just asked if they could take my ovaries after I am thru with my BC, it just so happened the doctor said he could do it both at the same time and be done with it.  I am through menopause so I am not using them. 

Lojo

I'd totally do a bilateral in your case. My thinking was very similar -- brca negative but mom, paternal aunt with BC (and no longer here). My mom's 2 sisters haven't had any problems, so I'd really been hoping it was sporadic. How did they identify the genetic varient? I've just had the standard BRCA test, nothing more extensive as there are no other family members left to test other than my one maternal aunt.

Ktjay

Lojo, my sister had extensive genetic testing years ago when she went through this. She was the first one to tie us to a variant.  Over the years they followed her and would retest her blood. I decided to get testing done, mine was not as extensive as her, they just checked my sputum. When I got my report back it just said I had a variant and wasn't BRCA.  I am not sure how you go about getting more detailed information because it seemed we got it with our results.

wallycat

Most docs say that a diagnosed cancer has been 7-10 years in the making, so a month, a week or so is NOT going to alter the outcome on the majority of cancers.  I myself think mine was going at least 8 years before my final diagnosis.

I am so sorry you are dealing with this...trust your gut, get a good medical team and I wish you the best.

toomuch

Ktjay - I'm sorry about your diagnosis but glad you found us. I had fibrocystic breasts and had 5 benign excisional biopsies before I was diagnosed with ILC. I also tracked my lump for a few months thinking that it was just another cyst. Turns out it was hiding behind a cyst and when the surgeon drained the cyst, it could clearly be felt. Like many women here, I had a normal mammogram 7 months before diagnosis. I had asked my surgeon about having a prophylactic BMX when I had my 5th benign tumor 3 or 4 years before BC but he essentially told me I was crazy. I should have gone with my gut and gone to a NCI designated breast center for a 2nd opinion. When I finally went after my diagnosis, 2 surgeons told me that I should have been followed with MRI's. I'm writing this with the hope that it makes you feel better. I'm 3 years out from treatment now and I only think about what changes I can make to be healthier going forward. It sounds like you have a treatment plan in place. I think that it's great that you doctor started you on Tamoxifen while you're waiting for surgery. Keep us updated on how you're feeling.

Ktjay

Thank you toomuch, I really needed to hear a story like that, that gives me encouragement.  You women are so brave and strong and I plan on being as brave and as strong.  I plan on taking my message and hoping to help other women.  If you have thick tissue or lots of fibroids get a MRI.  My sisters will now have MRI's as part of their exams and I am thankful for that.  My children will have the same and that makes me feel so much better.  I am going to share a funny story from this weekend.  I went away on a yearly girls weekend with 2 of my longest and dearest friends.  They of course were very interested in my diagnoses.  I whip out my breast and there in all my bruised glory they are feeling and seeing my breast so they knew what it could look like and feel like.  They now know to not just feel but to look.  it was hysterical though standing there and both of them at the same time trying to feel this lump. LOL just had to share a funny story....  

Sunny1012

Hello All,

I am in desperate need of some support.  I have been a mess.  I was diagnosed 10/28/13 with ILC about 1.2 cm after a mammogram, ultrasound and core needle biopsy all on the same day and went for several opinions ending up with a surgeon I felt comfortable with. I had a lumpectomy and sentinel node removal on January 8th.  The nodes came back clear.  The margins are clear on most sides but one side could not be definitively cleared as to whether it had ILC, LCIS or nothing. The reason it took until January was getting second and even third opinions but in my head that's what I had to do.   I love my surgeon and felt such a relief after surgery after being so scared.  Now I am a mess again as I face radiation and hormonal therapy.   I have researched radiation and tamoxifen and when you really dig in, its not good.  I have had 3 radiation consultation visits and my fears have not been quelched.  In fact, every question I asked really ended up with, this is what we know to help but yes all the things I asked can happen and some up front and some years down the road.  The Tamoxifen has issues as well and as I dig in I don't feel like we are told the whole story of the consequences these treatments have unless you ask specifically as I have.   I am so afraid of what will happen if I don't do the treatments as well as what will happen if I do.  I know I shouldn't get stressed but I have felt so alone and overwhelmed. I am very thorough in researching and asking the doctors everything--nothing is left unsaid and I have had more than one doctor tell me we can not guarantee you anything one way or the other.  You could live out your life with no more recurrence but then again you can have one with or without treatment.  So, I am wondering what advice you all have and how you came to terms with decisions about your life and treatment. 

pupmom

Sunny, my advise is to follow the prescribed treatment. Your chance of recurrence and possibly death is much higher without treatment than your odds of getting a rare SE from treatment. Best wishes whatever you decide!

quiltrunner

Sunny, I complete agree with yorkiemom's advice.  If you don't follow the recommended treatment you might  be looking over your shoulder living in even more fear.  By following the recommended protocol, you will know you did all you could.  I considered not taking tamoxifen.  When I discussed it with my oncologist she said she'd 'bitch-slap' me if I didn't! Lol.  Tamoxifen has been around for decades and while not perfect it has proven to be pretty darn effective.  I think most women don't experiences very many side effects.  I find it pretty tolerable and really the only big issue has been crazy hot flashes but there are ways to control those too.  God bless you as you travel this bumpy road.  

maryland

I have found myself wondering the same things as ktjay about the time. I was blow drying my hair on Feb7 when I really noticed some dimpling on my left breast, Phone calls and a biopsy and a metastatic work-up later I was dx with grade 1 ILC, with at least 2 involved lymph nodes. I actually noticed the dents a few months earlier but just wrote it off as getting older. Is that the time that it took to enter my nodes? I guess I'll never really know, and it doesn't really matter now, all I can do is move forward, but it's still in the back of my mind.

I too like so many women here have always had dense, lumpy breasts, I've had mammograms every year since age 40 (I'm 56.) I had the BRCA testing about 7 yrs ago and was neg. I don't have any sisters, my mother died at 74 from heart disease but never had  breast issues. Her mother and two of her sisters had BC, as well as my dad's mom.  I had atypical hyperplasia of the uterus at age 38 and it was removed but my ovaries remain intact. Thru all my imaging tests last week they found what appears to be cyst on my ovary so I go for another ultrasound for this Thursday and after that they are scheduling me with a radiologic oncologist.  I'm just not sure what to expect from here. I guess I just have to try and be patient but it's so hard. Have most of you started with chemo first and surgery later or the other way around? Or does it just totally vary with each individual? Also how do you sleep at night thru all this? My PCP gave me 30 Xanax on the 11th but I take 1 at night and I'm wide awake by 3:30. My surgean tried to call me in 5 more and the pharmacy says I can't have anymore for 30 days. I've been taking Benadryl instead to try and make the Xanax last but it makes me feel hungover in the morning. 

I don't know what I'd do without these boards, they have been my lifeline.

Good luck Ktjay, sounds like we'll be going thru this all at about the same time..Genny

edwards750

ktjay - I echo the others about not being so hard on yourself. My sister has the same kind of BC and she religiously had mammograms every year and still got the dreaded disease. Ditto for me and I was faithful about getting my annual mammograms too. Its a crap shoot and unfortunately for all of us we got the unlucky draw. My mother had BC in her late 60s and died almost 10 years ago but not from BC. As for RADS and Tamoxifen. I did 33 RADS treatments which were a piece of cake compared to chemo and am currently taking Tamoxifen. I am 3 years out from my DX. Of course there are risks for both but at the end of the day I was terrified about NOT have the radiation or taking Tamoxifen. I did not want to look back and say why didn't I and I agree with yorkiemom. I think the good outweighs the bad. There just isn't any perfect treatment or med that we wont have SEs from either now or later so we use and take what we have now. I for one was not willing to gamble but of course it is your call. Diane

momand2kids

Sunny

you are doing the right thing-researching the treatments- you have to feel comfortable with whatever decision you make. I was treated at an NCI Cancer center--- first and second opinions were the same on treatment--- I got what was considered "standard of care" at that time (5.5 years ago).  The final decision (lumpectomy, chemo and radiation) was based on "once I am done, will I be able to sleep at night".  I had great treatment-- and yes, sometimes, the treatment can cause other problems-but as someone said to me at the time "treat the cancer you have right now"... and I thought that was wise advice.

And, I sleep like a log every night--rarely look back and do not question my decisions.  

best of luck

Sunny1012

thank you all and thank you for understanding this isn't easy for me.  I will be going for my simulation soon even though the thought of being radiated is crazy.  Thanks again !

Ktjay

Genny5775, it does sound like we are very similar.  It is interesting to me the different ways they are being handled, but that is so up to your physician.  I will gladly hold your hand while we go through this.  You know more about your cancer already than I do.  I know 1 kind I have from the biopsy, but they have not checked any lymph nodes or anything else.  That may be because I told the doctor I wanted the works so that may be the difference. This is all so surreal.  

I have a daughter who is 26 years old who has been in and out of the hospital since birth.  She has a severe congenital heart defect and is followed by 40 different hospitals.  She will need a transplant in the near future.  She is terrified of losing me so every time I sigh or look like I am going to cry she is asking me if I am okay.  Bless her heart:) My other daughter is 11 and she keeps planning my recovery and giving me different stuffed animals to take to the hospital to help me thru my surgery.  Love it.  My son on the other hand is pretty much ignoring it and hoping it just disappears. Anyway, this is just such a journey. 

I wanted to let you girls know I am going for my oophorectomy, bilateral mastectomy and reconstruction next Wednesday, March 5th.  I am excited, scared to death, nervous, fearful, feeling like maybe I bit off more than I can chew, but scared not to do it.   I have never been in surgery for this long -- 5-6 hours, so that is bothering me.  I have not clue what to expect as far as the mastectomy goes and waking up with new boobs is going to be odd.  I just can't picture it.  Any suggestions how to get thru it?  Any suggestions for healing?

Lojo

Hi Sunny - 

Check this link

http://www.thegreenjournal.com/article/S0167-8140%...

which strongly suggests that radiation post lumpectomy is really critical in reducing local recurrence in ILC (although it doesn't specifically address LCIS rates)

I'm two weeks into rads, and so far it is easy - mostly just the annoyance of taking the time to get there, and uncomfortable positioning.

Ktjay

Sunny, I wish you luck, I am sure you are nervous.  However, I like what Lojo said, that would help me to feel that it will be okay.  The thought is probably scarier than reality.  I wish you luck and keep us posted on how it goes.

maryland

ok so I just finished with the ultrasound of my ovaries, 1st she did from the abdomen and then she said she needed to do the U/S vaginally so she could get a better look. The scan was no big deal but I got out here to the parking lot and have just lost it. I thought I was beginning to handle this but I'm just so scared. The oncologist that I was referred to called to schedule me for next Wednesday, then the radiation oncologist called me to schedule me for the following week. I got done with my customers, came here for my U/S and I'm just sitting here in this parking lot trying to pull myself together before I go home. I'm having a pity party here, thanks for listening....Genny 

dree2014

I'm new to this site & am just in the beginning of investigating my breast abnormalities!  I am posting to tell you Genny, that I wish I could give you a warm hug & hold your hand!! I am praying that GOD'S comfort surrounds you so completely that you experience that peace that goes beyond ALL understanding!!! 

maryland

Thanks Debbie, I'm ok now, it was just a little meltdown. This is all a day by day, moment by moment journey. I just went back to look at your posts and it's looking like things are looking up for you. I hope everything continues to test as B9. It is all-consuming and scary, I'm glad I have this site, it's kind of like a journal that talks back to me. Thanks for your prayers and kind words..Genny

Ktjay

Genny5775, I am so sorry you are having a double wammy of fear.  I agree with debb74, I wish I was there to give you a hug and let you know you are not alone.  I am glad you wrote your feelings down.  I know trying to stay in the moment is a real challenge.  Please keep us posted on how you are doing.  When do you get the results of your ultrasound?

maryland

Got the call 1st thing yesterday morning, nothing but a small cyst....phew!. The rest of the day flew by, never even took a single Xanax! Came home to a wonderful dinner cooked by my husband, thanks all for being there during my meltdown, I'm sure there will be many more to come.I hope you all have a peaceful weekend.

dree2014

WONDERFUL NEWS GENNY!!!! Have a FANTASTIC weekend!!!

Ktjay

Awesome news Genny, thanks for letting us know. 

Ktjay

Hi ladies, how is it going?  Genny, how are you doing?  I wanted to let you know I had my surgery on Wednesday, 8 hours later I was out.  First they took my tubes and ovaries, I have 3 very small marks from that, then they did my bilateral mastectomy, my cancer was in the sentinel node and 1 other node, but they took a bunch I believe if I understand right.  Not sure, never got to see my surgeon he went skiing right afterward   My plastic surgeon worked 4 hours on my new breasts, they made a decision to make them larger than what they were so they would look better.  So far I am not thinking they look real good, but they are bruised and swollen still.  I have a big gulley where they took the lymph nodes from.  I have no clue what my next course is until I get the pathology report back so I am trying just to rest and not worry too much.  How is everyone else doing, haven't heard from anyone recently.

maryland

Hi all, things for me are so much better. Went to MO last week and got my tx plan, just having it in place makes all the difference. I'm doing neoadjuvent therapy, I start chemo on Friday 14th. Cytoxan and Taxotere every 3wk x 8 round, then lumpectomy, axillary dissection and radiation, followed by 10 years of hormone therapy.

Ktjay So glad you got through your surgery ok, I'm sure your boobs will look just marvey once the swelling goes down. I hope you get good news when the from the path reports. I'll be thinking about you, keep us posted.

Bree, any new news?… thanks for the virtual hug.

And Sunny and everyone else, I hope this you all have a nice weekend.

Kand1-Kane

Well, I waited over a year, was 63 and never had a mammogram, cause I  didn't want to know if I ever had cancer, well had a gall bladder attack last St. Pats Day (and I don't even drink!) had gall bladder surgery in June and 2 days later, at follow-up, asked surgeon if he would check something.  From there it was a whirlwind of tests, and my 1st mammo , after core biopsy,into surgery Sept.  Stage 1 TNBC, chemo and rads finished week and half ago, no side effects from either, except hair loss and a rash on my chest, and that's about it!  Don't think waiting that long made any difference, since ILC isn't that easily picked up on scans or mammos, and even after that long tumor was 1.5x1x1 cm and micro met in 1 lymph node, so definitely don't beat yourself up over waiting, especially since it was checked in June and ultrasound wasn't till Aug. 1, core biopsy Aug. 8, and surgery Sept. 19.

Lily55

kand1 kane i thought you said you were triple negative not ILC? Sorry but i am confused by your post, dud you have two types if BC together .?. TN and ILC. Would be an unusual vombination 

Ktjay

Well, I got through my 8-hour surgery.  It was a long day for everyone, but I am done and back home.  I am a week out and feel good.  The first day or 2 was a little rough, but I was operated on Wednesday and home on Friday.  I already got 1 drain out, 1 to go.  Preliminary pathology report from plastic surgeon says that my ovaries were cancer free, my right breast did not have any cancer, and my left breast the cancer had gone into the sentinel node plus 1 past it I believe.  The pathology report said 16 nodes tested and only 1 had cancer.  I see my general surgeon on Tuesday who will give me the official read and help me to understand what that all means.  I feel very blessed, I have awesome doctors who have been great through all of this.  I guess since it hit the sentinel node I will need chemo so I am just trying to stay positive.  Thank you all again for your support.