Invasive Lobular Carcinoma 7.5 cm lump - stage III

Maggs09,

I feel so badly that you have had such a rough go of it. DX is never easy, but it seems like you really got hammered. I hope you are doing ok.

I do have multiple cancers and found out when the Dr called me at work. That was not a good day! It does get easier as you get more information and I was much happier when I had a plan. Then at least I felt like I was doing something active.

Try not to stress too much.....impossible, I know.....and try to take comfort in not being the only one.

Hi

I am no MD- but the PE needs to be handled--that actually can kill you... I had a PE after the birth of my second child--- I think they give you blood thinners--I did a 6 month course of self injections twice a day--- the cause of my PE was bedrest and surgery for childbirth-- see if you can have them figure out what caused the PE--- they will probably want to treat that first....  I am so sorry this is all happening to you-- remember,lots of people have polyps when they get their colonoscopy--- may really be nothing.  If I were you I would do as you said they are planning-- PE treatment, chemo, surgery then radiation or whatever they recommend.  

 It must feel so overwhelming and your poor child... when you are able to, you may want to give feedback to that doc about presentation..... it matters.....

best of luck 

You have every right to be angry!

You are your own best advocate Maggs09. While you may not get answers right away, you need to persist.

 I think sometimes we expect our doctors to be nothing short of God, and they are supposed to follow a certain "all knowing" criteria...and when that doesn't happen, we are disappointed and somewhat angry. It happens.

I can tell you with your type of breast cancer, is doesn't always show up on tests as cancer. Lobular cancer is what one nurse told me, "the sneakiest kind out there..." meaning it doesn't always present itself on imaging. 

My 7 cm "lump" which felt like a "toothpick" under my skin, was not showing on a mammogram. Or Ultrasound. Or MRI. Because my mother had BC twice, I persisted. AND I was demanding. I would not go home and "wait a month" to see if my "lump" changed...I wanted answers and I wanted them NOW. My family history helped move things forward, but I had to really SPEAK my heart. And to more than one doctor.

I was able to get an MBI and it clearly showed a mass. FINALLY! 

After a biospy--I headed right into surgery thinking my "mass" was only about 2 cm. The surprising 7 cm was confirmation to me that you need to #1 follow your gut and #2 speak loudly and frequently to get things resolved.

 If you are overwhelmed with all the medical stuff going on, I encourage you to find an advocate. Hubby, boyfriend, best friend, relative, etc...they need to be your voice when you can't think of the words to speak. They need to be the ears to hear exactly what's being said, your options, and also to be alittle less emotional in this arena for you. Then in confidence, they can be that sounding board for you, that shoulder to cry on and also that voice of reason when doubt or more questions threaten you.

Also, second opinions from doctors can be very valuable, but more opinions can sometimes make decision making more challenging. I speak from experience. Too many choices and you start to wonder which is the best one. That can be torture too.

Do what YOU need to do, to get a peace of mind about what steps you need to take next. You have every right to be angry, and the waiting can aggrevate your frustration.

PLEASE. Acknowledge it and use it as a weapon.

Take time to put a plan together and share it with your advocate. Then, move forward as time allows and in-between, take care of YOU. Pray, exercise, do a hobby, whatever it is that centers you and you enjoy--fill those wait times with that. 

Hoping for the best for you!!!

Maggs

so sorry to be so late with this response--sounds like you are moving along in the process--about the PE--because we knew what caused it (bedrest, etc) it was assumed that it was situational.  I will admit I was a little wary about strenuous exercise (i had been a runner) and it took me a long time to have some faith in my body, but it did come back and I am not overly cautious.  I am just over 3 years out of active bc treatment and am now feeling like myself and more fit-- starting to run again--- so things do improve-- you are in the middle of it.... keep us posted. If you end up doing chemo, you will be able to to do it.... sounds like your medical team is helping you--- and that all the cancer is OUT!!! This is the most important and now your healing and treatment can begin.... 

I think the pathology on both of these things will really give you the information that you need..... once you have a plan, you will feel much better.  Please do keep us posted.

Hi Maggs, I'm sorry you ended up dealing with the stress of two cancers but it is good that one requires no further treatment.



Regarding chemo, I had TAC for my ILC which is three drugs administered simultaneously. The T is for Taxotare which I believe is harsher than Taxol.



I guess you are having AC every 2 weeks x 8 then so many Taxol. A lot of ladies have that.



It is true in one way that they can't know in advance if a treatment will work for you but there are studies comparing the efficacy of different combos.



I think the nurse's remark was off hand. You can get another opinion from another onc if you want. Are you at a large hospital where you might be able to get another opinion even from another doctor there? Have you asked if the doc is experienced with ILC?



You want to be sure to get the best treatment possible. I hope you get a lot of replies from ILC ladies. Some I know had the same chemo I had.

Maggs,

 you definitely have had a little more than your share lately! Where my story is not the same, my family history has some similarities. My tumor was pretty large so I had neo-adjuvant 12Xweekly taxol and 4XDDmonthly AC. Then I had BMX and then 31 rads. I had complete response from the chemo and it was remarkable to see how the tumor was shrinking week to week. Its been just over a year since I finished treatment and so far so good. Last month I had a Diep reconstruction, and that has been challenging to say the least. Blood clots run in  my family so I had to get shots every day in the hospital --six total-- to prevent clotting. My sister got clots when she was going thru chemo (also BC but IDC) a few years ago. fortunately, hers did not go to her lungs. My dad has had several episodes of clots and has a couple of serious bouts with PE's. He's been on coumadin(sp?) or some type of blood thinners since--and his first bout was in the early 70's. Blood clots can be caused by all kinds of things, injury, inactivity or genetic--we fall into the genetic. Or just bad luck!! (my sister's son also suffers from clotting) So we are the extreme. What have they done to treat your PE? 

As far as waiting for chemo, you have done the hard part with the surgery. They have removed the tumor. Chemo will kill any of those small wondering cells they may have missed. .Can I suggest that you find other boards--boards that are more specific to what you are going thru--Surgery this month, BMX, and especially the August chemo board for when you start chemo. Those boards are full of women going thru the same thing as you.

As far as your grade changing, I'm not sure, have some ideas, but I would ask your doctor. do you have a nurse advocate? Mine really helped answer a  lot of questions.

Hang in there, there are many women here to lend support. You are in a good place here. 

Conbon14 - I'm sorry that you've joined this club but you've come to the right place for information. ILC sometimes grows diffently then IDC. It's more likely to grow in sheaths then in lumps. It can be difficult for imaging studies to accurately predict the size. I would absolutely want to have a breast MRI prior to surgery. This study may help your surgeon obtain clear margins. An MRI will also rule out BC in your opposite breast. In your words, I would DEMAND, this test. The waiting for a plan is the hardest part. I hope that you have one in place soon.