New Diagnosis of Infiltrating Lobular Breast Cancer Here

Diseases & Conditions Breast Cancer
1
I have been reading some of the posts and can identify with the emotional roller coaster.  I cry awhile and then I get up and take the dog out for a little while to play.  I am a nurse, so I have been doing my research about this cancer.  I am also a Medical Laboratory Technologist and Paramedic, so I know too much for my own good (at times).  I am 3 weeks from noticing that the fibrocystic lump was bigger and harder than normal and the nipple went to an "inny".  I knew something was not right.
 
This is a scary thing for me.  Especially when I read that this cancer is on the increase (with boomers, such as myself) and that it is rarely caught, early, by mammogram.  Seems mammogram is NOT the best screening tool, MRI is.  We don't all get MRI, so 10-15% of breast cancer victims won't know it till at least stage II.  The reason:  MRI is too expensive for everyone to get.  Per one radiologist "it would bankrupt the system".  This situation really makes me angry.
 
Like another poster:  I am self supporting.  I am a travel nurse, so having to really hustle to find work at home long enough to get through this.  Scared to death I will wind up with no boobs and financially destitute all at the same time.  Hard to travel nurse and get a mastectomy at the same time.  Plus, I work ICU and ER, not real great places to be while on chemo, which I will have to have after surgery.
 
Got the bilateral MRIs today.  Real question here is will it be just the right one or both?  I have already decided I'm getting bigger ones to replace what I lose.  The biggest issue here is that even though the tumor is 2.5 cm at it's greatest dimension, the breast is too small to leave anything that resembles "normal" and get "good" margins.  Could get lumpectomy with the ductal CA, but not with lobular.  This B/C likes to make multiple tumors in the same breast and if you have it in one there is a 30% chance it is "mirrored" in the other.
 
Just got back from the MRIs and stopped at Lowes and bought myself two blooming orchids for the collection.  I deserve them.  (even if they were extra pricey with the flowers).  I usually get the ones after they flower and are reduced for quick sale.
 
I have great support from medical friends, regular friends and family.  My travel recruiters are calling me weekly for updates.  One friend may be my "recovery room" nurse.  All nurses, here, plan on visiting just to make sure I don't get "ignored" by the hosptial staff.    My sister is a Nursing Student and plans to stay by my side to make sure they treat me right.  Even though my surgeon assures me that the hospital nurses treat "his" patients well.  I am sure he wouldn't stand for anything less.
 
I think my greatest comfort is that I know I will LIVE and that there is life after this.  If I lose it all and am healthy, I can earn enough to get it all back. 
 
Did I say that I am really angry that I have only had my hypothyroidism and fibromyalgia under control for the past year?  I was just starting to make inroads on the debt from that and grad school.  Sometimes life just isn't fair.
 
I admit I didn't get a mammogram for 3 years.  But, I forgave myself as this one most likely wouldn't have been see until recently, on mammogram (no calcium deposits).
 
They seem to have a good program where I am:  counseling and groups for a community support network.  Breast center has been awesome.  I will have surgery within a month of finding the problem.  I have the surgeon other doctor's use for themselves and their families.  He does a lot of breast cancer.  Not sure the story why he has a special interest in B/C.  Seems there was someone close to him who suffered with it.
 
I am glad this forum is here.  I have read lots of good advice.  Thank you all!!
 
2
Hello

I am so sorry to hear what you are going through. It seems like you have a positive and corageous attitude. I hope I can be as strong as you if I get cancer news. Love, Molly
3
Hi ICU RN...welcome! Sorry you are our newest sister here, but we are glad you found us. I had ductal carcinoma, but have heard the others with lobular say the same thing you did regarding the different qualities of that cancer. Just be sure to make the choice that is right for you, and don't look back with any regret. One thing you have to consider as a nurse is the risk for lymphedema and lifting patients. That may influence your decision...

Yes it is a frightening time and a roller coaster at first, mostly what seemed to me like a down hill runaway roller coaster (where were the ups?). With time, you will feel yourself regaining control and taking charge, and feeling ready to get on with the show.

Ask us whatever you want, chances are someone here has an answer or experience to share. Where do you live? You can read about us in the roll call post at the top.
Lori (from Michigan)

4
ICU RN
Wanted to welcome you, but sorry you have to be here.I was diagnosed with IDC 6 months ago. Emotionally I was a train wreck, but somehow managed to move toward the light at the end of the tunnel. Allow yourself to grieve , but keep planning your treatment. It sounds like you have a wonderful support system. I'm glad you found this site, the women here are wonderful.
Michelle

"There are two ways to live your life. One is though nothing is a miracle. The other is as though everything is a miracle."     -Albert Einstein

5
I read where one MALE oncology doc felt that everything should be done to preserve the breast. He did allow for a large tumor and small breast. We should have the results of the MRIs tomorrow or Monday with surgery tentatively scheduled for next Friday. Otherwise, I am perfectly comfortable with the decision for mastectomy. I don't do bathing suits (2 times in 20 years). I love the outdoors, just prefer other things: work in the garden, hot air ballooning and hiking. Could care less about getting half naked and laying around in the hot sun. I have often said that I am peace with my creator and not afraid to die. The reality is that although I am at peace, I do not WANT to die, still have things I want to do. Plus, there is most likely no one who would love my dog and be as good to her as I am.

I have learned, this evening that my sister will not be able to come to Oklahoma City for the surgery. She is bipolar and is having trouble with her meds...has gone into mania despite the meds. My mother is not well and my sister is on Social Security disability. Her shrink didn't feel she was stable enough on meds to adequately care for herself, much less take care of me, at this time. She is my heart and I really wanted her here, but I did my best to let her off the hook. I have a cousin and several good friends here, so I should be able to get a ride home from the hospital. I think my Mom and sister are having a harder time with this diagnosis than I am. I have pretty much quit crying. Mostly anger now (stages of grief). I wonder if I am unusual in that although I do not consider breasts an expendable part, I am not too upset about their loss. I don't feel it will make me or break me as my self concept has never centered around my femanine attributes. I have always considered most of the issues a "hassle". Periods (back when I had them). Fibrocystic breast disease has left them sore and tender a lot, guess that won't be an issue after next week.

I do have a couple of questions: realistically, how long do you feel really bad after mastectomy? How long do you have to haul around the JP drains? When you get chemo, how many days do you just feel like crap? Is it unrealistic to think I can take myself to chem? I could probably get a friend to do this with me, but I really don't want to have to ask them unless there is no other way. I will have to get someone to pick me up after the surgery as I doubt they will release me to myself. Plus, I don't want to be driving around high on Lortab or whatever they give me for the pain. The doctor says the underarm hurts the most and the chest almost not at all. Has this been the experience of others here? Is it unrealistic to think I can care for myself at home with the drains and all? That is the main reason I wanted my sis here and she seemed logical as she is not currently working. But she is pretty delusional and started crying believing that my Mom might fall or have a serious problem with her heart disease and no one would be there for her. My Mom's health is not the best. They were really wanting me to come to Atlanta for the surgery, but I don't know anyone there but them anymore and I don't have a license to practice nursing in Georgia. Arranging dog care and work around all of this doctor stuff is getting to be a bit taxing. I have no clue how I am going to fit in counseling and all the other stuff the doc says I have to do. Getting to chemo once every 2-3 weeks shouldn't pose too much of a problem unless I have to have someone to drive me around. I think I would rather do a cab than impose that much on my friends. They all work and have their own lives, health issues, jobs and families.

My nurse friend says that she has two nurses working for here in NM going through chem right now. One has Stage IV with mets and the other had a mastectomy with Stage II. Both are managing to do chem and work without any significant difficulties. But they are supervisory nurses. My friend has offered to hire me for an open supervisory job, post op, if I want it. Plus I have the half time teaching job.

Please tell me if I am being too unrealistic about working and doing what I have to do to get through this Cancer treatment. I will go post my info on the info part.

Thank you all.

Cathy
6
Cathy-
There is no way to know the answers to some of your questions. It seems with chemo that there is no standard answer. I was lucky and had a relatively easy time with it (AC, 4 rounds). I live alone and was about 50 minutes from the cancer center, I also wanted to drive myself. They suggested having someone with me at least for the first time, to see how I felt. Plus, I took ativan before the first chemo, so they did not want me to drive. For the 2nd 2, I did drive myself and it was absolutely fine. I took the ativan when I got home instead of before.

I did not have a mast, so I cannot address those issues you asked about. If you set your mind to do things yourself, you just may be able to...but don't try to be a superhero, let people help you. I also had a hard time with that, I am not one to accept help easily. I ended up being pretty independent throughout, so it was ok...you may fare well too.

I totally understand the dog issues, my dog (Tavish) is my baby too..and thankfully he was not here when I went through this 5 1/2 years ago, I just had me to take care of.

And as for your family having a hard time, I often think that it is harder on them...we get to fight actively with chemo and surgery, but they feel helpless.

Hang in there...you're doing great!
Lori

7

Hi Cathy! First, the emotions that you are experiencing right now are very NORMAL. We have all felt the very same way that you are feeling. I was 51 when I was first diagnosed and had a modified radical mastectomy. I had 21 lymph nodes removed, 19 positive. I had no desire to have reconstruction either. In fact, I am very sorry that I wasn't thinking clearly enough to tell my surgeon to remove both breasts.

I came home from the hospital (after 24 hrs) w/ the drains. I was able to have them removed when the fluid that drained was clear. I think it was about 5 days. There are different types of shirts that you can purchase that have little pockets in them to hold the drains. My oldest dd and granddaughters and I lived together and I have to admit that I was glad there was someone home to help me the first week or so. I found that sleeping in bed for the first couple of days was impossible. To difficult to get comfortable and up and down. I slept in my recliner, w/ pillows behind my shoulder for support. I wasn't allowed to drive for about 2 weeks. My surgeon wanted plenty of time for healing. As for the pain, most of my pain was right after surgery. They gave me pain shots that took care of that problem. Once home, I would take tylenol 3 or ibuprofin 800 if I was hurting. You need to realize that there will be some things that you just can't do by yourself. Drying your hair. You can't pick up anything heavier than 5 lbs for awhile. But, it is doable. I would suggest that you set your pride aside (difficult for us women to do) and ask your close friends to stay w/ you for a few days after your surgery. Someone that you are very comfortable being around. Let them take care of you until you are feeling good again.

I also had 4 a/c, 12 taxol and 36 radiation. I wasn't able to drive myself home after the a/c. The premeds they gave me made me sleepy. The side effects from the a/c weren't bad. I never threw up. Wasn't constipated (just the opposite). I was tired for a couple of days after treatment. Usually didn't sleep the first 24 hrs because of the steriod premed. But, after 3-4 days, other than being tired, felt pretty good. And it seemed that I felt the same after each of the a/c.

I believe that you can do anything that you set your mind to but you have to remember that your body is putting up a big battle to beat the cancer. Listen to it. When you feel tired, rest. If you need to cry, then cry. Just be aware of what your body is trying to tell you.

Hang in there. We will be here for you.

Hugs...Deb

 

 

8
Cathy,
Everyone truly does respond to chemo differently. I was not able to drive myself during AC-but did very well on taxol/herceptin. I felt pretty fatigued the first couple of days after AC, and was constipated once. During taxol I had bone pain, but don't know if it was from the nulasta.All in all I believe I did well. I was able to take care of my two kids, and the small petting farm we've acquired over the years.Chemo will proably not be as bad as you think.
I did not have a masectomy, but I do believe you will need some help after the surgery. I stayed with my mom, as I could not llift my two year old son. Friends truly do want to help you so don't be afraid to ask. Most women have a hard time with asking for help, but most women are happy to help to do it.
Best wishes
Michelle

"There are two ways to live your life. One is though nothing is a miracle. The other is as though everything is a miracle."     -Albert Einstein

9
HI Cathy, You are one busy lady!!!!! Sounds like you will have to take a little time from all those activities! I had very little problem with my mastectomy. More problems with tram flap recon seven months later. I was not in a lot of pain and was able to do some cooking, etc. while recuperating. I did sleep in a recliner for awhile. Since you are a nurse you know lobular can mirror in other breast. If I were making the choice I would opt for the bilateral mastectomy and get it over with in one surgery. I had problems with being lopsided feeling so had the tram flap. The breast is fine but have had abdominal problems since. In October I will be nine years from diagnosis. I never had chemo nor radiation, only the mastectomy. There is someone here with just about every situation possible who can help with questions. We will help in any way we can. Hugs Mary K. MK from Fort Worth TX area


10
Cathy,
 
Welcome to a great support group, but sorry you have to join us.  I will tell you a little of my story in hopes it will help you.
 
I had a lumpectomy and lymph nodes removed, only to be followed 3 weeks later by a mastectomy.  The cancer had spread along the blood vessels.  I had infiltrating ductal carcinoma, stage IIIA, 6cm, 1+ lymph node.  The lymph surgery is the most painful.  The mast. was a piece of cake in comparison.  Minimal pain.  My drains each time stayed in about 6 days.  I was crazy enough to drive myself to have the first one removed.  BIG mistake!  Chemo was doable.  I drove myself every time.  I went back to work just after my 2nd chemo.  Only called in sick once during the whole thing.  I felt a little nausea and tired, but that was about it.  The nausea lasted about 3 days and was helped by meds.  For me (and many women) the loss of hair is the worst part.  I eventually shaved my head (didn't actually lose all my hair) and wore a wig for about 5 months.  Following chemo, I had about 7 weeks of rads, which is very easy.  The worst part is getting to the treatment center.  I had a fantastic team and actually enjoyed seeing them every day.  I miss them now!  LOL  Caring for the drains wasn't a problem.  I did need my DH help with keeping the surgical sites clean and disinfected.  If it weren't for having lymphs removed, it would have been fine to handle alone. 
 
Just remember that everyone reacts to chemo differently.  This only gives you some general guidelines to go by.  I am one of the very lucky ones.  I am grateful every day for how everything has turned out, considering the alternative.
 
Stay positive - that's my best advise.  Let people do things for you and don't be afraid to ask for help.  YOU CAN DO THIS! 

L & H,
Kathy

11

Okay, I am better tonight, but still having trouble sleeping. confused   I did CPR recertification this morning and had lunch with another faculty member at the college here.  She is one of my best friends and is planning on taking me to the hospital and bringing me home and spending at least the first night with me.  She started crying at lunch and I couldn't console her.  She works in the recovery room where I will have surgery.  We have been buds for a long time.  My boss at the college said to remember that the "whole nursing faculty" is part of my family and that I should let them know if I need anything.  Another friend is planning on doing a "smudging ceremony" with a Sioux Medicine Woman during my surgery time.  They won't actually be here.  I am still working on what to do with Sheila (dog) for a week.  She a handfull and I really don't want drains with her playfullness.  Worst case she stays at the vet for a week.

I think I will want reconstruction and have pretty much decided on bilateral mastectomy.  To get better boobs, I would probably have to have an implant in the remaining breast and I won't do that with a possibility of this cancer there....seems like implant and B/C that is this hard to find are a bad combination. 

If surgery is next Friday it will be Labor Day Weekend.  The school will be out on Monday and my boss is getting someone else to cover for me in student clinicals on Tuesday.  That gives me 9 days to get rid of the drains.  I have easy clinicals this semester:  I take the students to the old folks home and to the state mental hospital:  nothing that requires me being in the hospital setting with all the germs.  All I have to be able to do is drive there, stand on my own two feet, answer the student's questions and grade papers.  I usually rotate students through ICU, ER and medical surgical or trauma stepdown. 

I discovered a couple of good things today:  not only did I take out disability insurance on the new car, I have it on most of my accounts!!!!  With this and what little I will make at the school, I should be okay, financially. :-)

I had my hair cut real short as soon as I found the lump and altered nipple.  I KNEW what was going on.  It is so short it doesn't hardly move at all, even in these Oklahoma winds!!  It is already baby fine and thin due to hypothyroidism.  Maybe it will grow back thick and curly!! I'll have to get a wig just so I don't freak out the old folks and psychiatric patients by showing up bald.  I barely have eyebrows now:  fair haired Irish.  LOL trying to imagine myself bald, no eyebrows or eyelashes. eyes    Do you lose weight with chemo?  I have been on thyroid for a year, but still have 20 pounds to get back to my ideal 120 lbs. 

I guess I am not too concerned with pain.  I've had knee surgery and rehabed the knee twice, now that HURT!!  My biggest concern is giving over enough control to let the anesthesiologist put me under for the surgery.  I also have fibromyalgia, so PAIN is almost my middle name.  Though it is much better now that I am on thyroid meds.

Thank you all for all your input.  I am so glad you are all willing to share.  Do you know if insurance will pay to have the other breast removed if I do it at the same time, B/C there or not?

Cathy in OKC

 

 

 

Cathy G

12
I don't know why insurance wouldn't pay if your doctor deems it necessary, and with lobular I wouldn't think that would be a problem. You need to have the drs office ins people get approval for you beforehand. Dogs seem to know when they need to be comforting. I bet if you bound your drains some where they wouldn't be out for the dog to accidently pull on them, you could have your baby with you. I would think that would be more comforting to you than knowing he/she was at the vets and unhappy. Can you tell I am a dog lover? My dogs are so much comfort to me. Hugs MK


13
Hi Cathy! Welcome to our board! Yes, your insurance will pay for the other breast.  The federal regulation requires insurance to pay for any surgery that restores symetry, whether it be mastectomy & reconstruction or augmentation. I had a bilateral mastectomy with immediate recon with expanders and implants. I went back to work about six days after my surgery (drains tucked inside!). That was a mistake! After several weeks I was emotionally and physically exhausted! Your body will have gone through a significant trauma and will need time to heal.  Don't short change yourself! You have people who love you and will help you; let them! Good luck! Frayda
14
Okay, so if I get double mastectomy to effect a better "cure" rate, the insurance will pay for it. My surgeon will not do/allow immediate reconstruction. If I lose both breasts will they pay to reconstruct at a later date? (usually) Or is no breasts considered symmetry? I think my other breast is affected with the B/C as well. Does this make a difference is whether there can be reconstruction at a later date? Maybe I need to talk with the insurance company before I do anything?

Thank you.

Cathy G

15
Many of the women here had bilaterals and no reconstruction at all. That surely is the "free feeling" way to go, no bras, no dealing with breast problems, but you do have to deal with the scars. Reconstruction of both breasts at the same time would be more symmetrical and would hide scars, Altho I have do have a scar across my breast that was reconstructed, it is not ugly. Your insurance should pay for later bilateral reconstruction without problem if that is what you decide. You could even wait as long as you want to decide. Think about it and make sure decisions. Hugs MK


16
It shouldn't matter when you decide to do the reconstruction. As an expert in dealing with insurance companies as it relates to oral and maxillofacial surgery, it always pays to speak to an insurance rep BEFORE surgery to find out what is covered and what needs pre-certification. If they give you any hint that any of this may be considered cosmetic, read them the riot act! What ever you decide to do, it is all medically necessary under the law! Your surgeon must have staff that deals with this all the time. They should be doing this on your behalf. In today's insurance climate, most hospital admissions must be pre-certified, which the doctor's office must obtain before the surgery. It wouldn't hurt to call them and make sure everything is in order. Hugs, Frayda
17

Maybe I am being too over cautious.  But I am self supporting and have a lot of things I want to DO.  Going through this ONCE is more than enough for me.  My thought process here is that if I only have one breast removed (results of MRI still not back from last Thursday may have B/C in both) then to reconstruct one would most likely not work as I want to get a little "more" than I was given to start with.  I cannot even imagine doing this with the left breast intact, with implant, due to the difficulty of diagnosing lobular with no "enhancement".  I am not likeing the statistics I see for recurrence of lobular and I don't have enough original breast to get a good result with lumpectomy.  I really don't want to go through chemo twice:  once to reduce the size of the tumor and another after the tumor is removed and still have the high risk of recurrence. 

I have considered bilateral mastectomy and no reconstruction.  I imagine that anyone getting close enough to me to see me naked, would be able to deal with the scars.  I think by the age of 52 most of us have a few scars.  This is just a lot more dramatic than a gall bladder scar or hysterectomy scar.

To tell you the truth, I just want this part of my life to be over and done with so I can get on with my "hopes, dreams and goals".  I want the best cure rate, lowest recurrence rate and bilateral mastectomy seems to be the way to go, for me.  My ego, self confidence has never been linked to my breasts, probably because I never had that much to begin with.  Until I found out it was cancer, I thought my boobs were finally starting to grow.  Should have known it was too good to be true.

 

 

 

Cathy G

18

Hi Cathi,

Just a note of encouragment for life after a lobular diagnosis. I'm still here after 5 years and I had a bad-boy cancer.  I too had a 2.5cm tumor that they found only with ultrasound (I'd been having yearly mammos with nothing spotted on them) HOWEVER, when I had my bilateral masts, 3 tumors were found in my left breast and hyperplasia was in my right breast. So, it was probably only a matter of time for the right one to develop bc. Bilateral was a good choice for me.

My lymph nodes were 10 positive and one of them was larger than my largest tumor and protruding into the surrounding fat.  I also had a mammary node involved.  I feel it really is a miracle I am here and have no regrets about the aggressive approach taken.  Like you, I have lots to live for.

I do regret making a personal choice for the bilateral trams with implants. This choice was made when they told me the surgery would probably take care of all the cancer and I wouldn't have to have radiation.....wrong! I had very aggressive radiation and it did a number on my skin and implant on that side.  It was a long road of multiple surgeries to remove incapsulations and finally I lost the implant and struggled with a MRSA infection (being an RN you know about those) and ended up doing lots of hyperbaric oxygen treatments to get rid of it, and grow some skin over my exposed rib bone. No fun.

I do not share this to freak you out, but I hear in your post "wanting to get on with life" and not be out of commission too much.  So, there is nothing wrong with delaying reconstruction and taking your time to make that choice after recovering from the masts.  I still have the tram and implant on my right and wear a prosthesis on the left. Now I've experienced a little of each option and I wish I had not picked the tram/implant combo in my original surgery.

Everyone's experience is so very different, but I know how helpful it can be to read a variety when you are choosing for yourself.

Blessings on this road.  Life is good despite the bc potholes ~ Joany

19
Well, Heard back about the mammogram the breasts: right, as we know, has the lobular B/C 2.5 cm. On the left they are suggesting "further studies" and are suggesting ultrasound. I told the doc's office person that I didn't want to mess around with this anymore, that I had decided on double mastectomy, explaining that I have no palpable lump on the left, but that there is an area of "thickening" that I can feel. That both breasts are the same size and both have been finally "growing" since I started on "natural" replacement hormones this time last year. I told her I didn't want to mess around with any more tests giving this cancer more time to spread, I want it OUT of me. That I am only going through this ONCE, assuming I have a choice. That he said (last week) he wanted to do surgery this week and I was hoping we could do it and get it over with this Friday (Friday is his surgery day). She said she would relay the message. Waiting to hear back from the surgeon's office.

Cathy G