Just need to talk

TracyDenver,

You do not say where you are from, but I am asuming Denver. There are many great PS in the area who do DIEP and other reconstruction surgergies, if you so choose. Also, depending on the size of your breasts, determines how disfigured you will be. I have ILC 1.8cm. I had a lumpectomy, was all OK for rads, but my margins were very unclear. My surgeon was honest: if he did a new lumpectomy, he would want to take a lot out. It would be bettert to do a mastectomy and reconstruction. i appreciated his honesty and agreed with him. I chose a unilat with TRAM. My DH was pushing for a bilat so this wouldn't happen again. I am partial to my breasts and wanted to keep one. It has been 9 months and I finally can look at myself in the mirror and not be looking for my 'old' breasts. I had to do a reduction on the good side for a match. To me, that was hard psychologically, but I am now Ok with it. The decision has to be yours, after you have gone to the BS and PS and discussed it. My BS would have done whatever i wanted. Also, get several opinions. I did 2 opinions, but wished I had done more to see if everyone agreed. Again,you ultimately make the decision that is best for you. My PS did not take my insurance so he was paid out of pocket. he cut me a deal, and to me, it was well worth it! PM me if you want.

D

I had ILC and had rt mastectomy and wish I had just gone ahead and had both removed.  4 years later I had the one left reduced and a silicone inplant in the rt one and have been much happier ever since..  Marsha is right though it is such a personal decision but I wished I had done different with hindsight.  the very best to you on making your decision.  hugs sherry

I have ILC, had a lumpectomy with rads, now doing chemo. Was VERY on the fence with the chemo decision due to my Oncotype dx score being a mere 11. Seems like overkill, but I'm pre-menopausal (although chemo seems to have changed me to post-meno) My tumor was 2cm and I had a micromet involvement in my sent. lymph node ) all other nodes clear) I wasn't prepared for a mast and the whole nipple/no nipple thing was just not somethig I could consider. Still not sure I went the right route....but I'm on it and that's that I guess. I suggest getting 2nd 3rd or even 11th opinions, one will say "who says you need chemo" and another "well, chemo is the standard here", "we think mast would be the best route" or"mast is a bit radical in your case" There's a lot of info...tooooo much info and no iron clad "well ma'am, you've broken your arm so we're putting on a cast" straight forward answer. This is a personal decision. Follow your inner voice

I was in a similar situation. Small lump in the right breast. Paralyzing fear, but I thought it would be lumpectomy, radiation, chemo, and life goes on. But the doctors all seemed to be extra concerned about the insidious nature of lobular cancer. All of them recommended mastectomy or even a double. They were not happy at all about the location in the upper inner quadrant - "bad cosmetic outcome". After a lot of struggle on my part, I agreed to a single mastectomy and an immediate reconstruction with alloderm and an implant. Straight to silicone. Is that what you're being offered? That was/is a weird journey that I'll discuss with anyone interested. For me, nothing has been straightforward, all confusing and scary, and the long waiting for treatments and clear good decisions is awful. But as I make each move I'm a bit more comfortable. For me it has been a struggle to absorb what they were telling me.The facts are there, the understanding is not. Almost nothing happened as I thought it would. My cancer education I guess. 

As far as the new boob, it is a "good match" I am told. I can see what they're saying. Viewed from the front, it's quite remarkable, from the side not so much. In clothing I look fine.

Ann--I'm wondering what made you decide to do chemo, with an Oncotype of only 11?   You're stats are almost the same as mine, except that I had a bigger tumor and I didn't have any lymph node involvement.  My oncologist said that it absolutely wouldn't be necessary, and she is very tied into the network of Boston oncologists at Dana Farber, etc.--talks with them or emails every day, so I am assuming that what she told me is "the standard of care."    Just curious--perhaps it was your own wish to do it?  

Debe,

Sorry to hear about your diagnosis....I was right where you are about a year ago.  The ladies here are very smart and will give you some guidance.  I learned very quick about ILC and about hospitals.  The surgeon helped me navigate through everything....the system, appointments, the surgery, after the surgery until I started seeing the onc. regularly.  She was on the phone with me a lot and did a lot to settle my fears.  Good luck and I am sure the more knowledgeable ladies will be along soon! 

Debe--Let the surgeon tell you what s/he thinks you need to know before you start asking questions. What the surgeon tells you may lead naturally to questions, or it may take a while for you to get informed enough to figure out what you still need to know.Come to the first meeting ready to take notes, or bring someone with you, or bring a small digital recorder, because initially you have to take in a lot of information while you're still in a mild state of shock.

If the surgeon makes a particular recommendation and doesn't fully explain why, you can always ask for the rationale. More likely the surgeon will go over what s/he knows so far and lay out options for you to consider. My surgeon also gave me some helpful informational material.

Thanks Gitanne and Seebee,

I will take my husband with me, between the two of us we should absorb most of the information.

Would you explain what ER+ PR- Her2- mean (if it isn't too personal).

Thanks, Debe

It's a good idea to bring your husband or partner to the first meetings with your doctors, since they will inevitably fall into the role of caregiver to some degree.

ER is estrogen receptive, PR progesterone receptive, and HER2 is another chemical property of tumors which is either present (positive) or absent (negative). An estrogen receptive (+) and/or progesterone receptive tumor can usually be effectively treated with hormonal therapy, which works by cutting off the supply of hormones it needs to grow.. A tumor that is HER2 positive is more aggressive than an HER2 negative one and is treated somewhat differently.  These properties of your tumor will be indicated in your pathology report.

You should request and keep copies of all your medical records, by the way.

Dear DebeDawn....I am so sorry that you are going through this but I can relate so much. My lobular tumor was the same size as yours and I remember that was the most shocking thing of all. I couldn't understand it since I had always taken care of myself and had regular tests and exams and mammograms.....I have since found out that the mammos don't pick up lobular and that as it doesn't form a lump, it is hard to find on examination too. I can tell you my story another time if you are interested...I just wanted you to know that I had a 10cm "thickening"/tumor, multi-focal, in several lymph nodes - almost 4 years ago. I had a mastectomy, chemo and radiation, plus hormonal drugs ever since. I am doing really well. If you want to know anything at all, just ask. Someone here will know. And we know how you feel, believe me. I can pm you if you want (that is personal message). Be strong. You will get through it and one of these days you will be on these boards helping a new person, like I am doing now. Hugs xoxoxxoxoxo

Sorry I don't know what happened to the rest of my post.

Seabee, I am 5' tall, weigh about 115 and wear a DD cup.

The surgeon is scheduling me for a chest xray, a bone scan, and a CATscan on my liver.  Are these normal tests associated with ILC or is there something else to worry about?

Thanks Debe

DebeDawn -

So sorry to hear of your diagnosis. I myself hate surprizes that aren't fun ones.

When I was diagnosed last year with ILC, I had a bone scan, a torso CT, and breast MRIs prior to surgery. The MRI's were to get a better idea of the size and to see if there was anything else in there. Allegedly the scans were to verify that I was good to have surgery, but they're just checking to make sure you have nothing else going on - in general and cancer-wise. It doesn't mean they think something is there - it's just that they have to check.

I had my bone scan and CT on the same day - the CT required fasting, and then they were running behind. I was scheduled to meet with an oncologist between the two scans, while the imaging solution was being picked up by my bones. Long story short, everything ran behind and I went hours and hours without eating, and I became a total basket case that day - I had not really allowed myself a "come apart" since my diagnosis, and the fasting and the medical procedures and the oncologist sent me over the edge. It was a very long and tear-filled day, but in hindsight I really needed to have a day like that. I cried over every little injustice, right down to the fact that I didn't even want to have so much as an IV, let alone surgery. Processing a big chunk of the grief was really helpful in clearing my mind. Just telling you this because (1) you're probably due for a freakout if you're still in that early "stunned" mode, and (2) the fasting really brought it on for me, so be prepared...

I hope everything comes back normal on the scans! You're at the worst part of the process - finding out, getting details, making a surgery plan. Hang in there, and be good to yourself.

Coleen