Hi, NEW ILC...deciding on surgery/treatment options

I don't know what your status is yet, so your treatment options will be based on that. But I went to MD Anderson for a second opinion (in Phoenix) and felt completely comfortable and confident while I was there.  You are in good hands. Let  us know your news as you find out and many of us can help you...hugs

Hi, Melissa, 

Welcome. Nice supportive group of women here. Your questions will be best answered by your drs and it sounds like you're going to a good place. We can all offer advice on the feelings we have had and the impacts of our decisions. Everyone says that it gets easier once you have a plan and that's true.

I originally planned to have a lumpectomy to excise the one not very large tumor found on my initial mammogram. But the subsequent MRI found a second tumor in the same breast which made lumpectomies impractical (would have left me with little breast.) I had a unimastectomy, no rads, no chemo. Initially tamoxifen, now on Femara. I imagine you've had an MRI. They're important with ILC because they catch more than mammograms. 

The decision of lumpectomy vs mastectomy is not an easy one and shouldn't be made based on emotions alone. If you can, and this is hard, try to base it on the science that's available. Statistics do not show that survival is improved by mastectomies. And it is no small thing to lose a breast. That being said, there are some who can't bear the stress of surveillance. (I love my one remaing breast but am a wreck before each yearly mammogram and MRI, so I understand this.) From here on you will be watched closely and can opt for a mastectomy later should you need one (hope not.) I have yet to do reconstruction and fair pretty well with prostheses so far. Didnt want to be rushed into that decision while also dealing w cancer and am glad i waited.

this decision is also about trying as best you can to anticipate what you'll best be able to live and deal with as you grow very old .

Best of luck, keep us posted.

agree sgreenarch and binney have great input...my surgeon mapped out my options from my biopsy and ultrasound...felt we could do lumpectomy...going in, she found positive nodes and LCIS throughout my breast...I had clear margins and successful lumpectomy...BUT asked what she would do if it were her....she said bmx w/ reconstruction....I respected her view... Started chemo and during those months researched a lot, got second and third opinion, docs met with tumor board and I finally came to the decision that for me and where I am in my life, 54 years old, grown children, celebrating 30 years of marriage, etc....I am keeping my lumpectomy.  A difficult decision but I am at great peace with it...if the future holds anxiety and worry each screening I have or if there is a recurrence...then I will revisit bmx without reconstruction...I want to get back to living without all those surgeries...I am small breasted and never one to want a big chest...and not sure about the numbness that comes with bmx/reconstruction??....

So it truly is a difficult decision...a lot of work to get info. And totally a personal decision that is right for you, the type of cancer you have, and your lifestyle...wish it was easy...but nothing comes easy on this journey!  Stay positive, pray and you will find your answer...peace to you and good luck!  Rosie

Hi Melissa - sorry that you are joining this club. You are not alone in this fight and this forum is a wealth of information and support.

I agree with yogomama, it is great that you have a choice. I, like you, had a choice. There are so many moving parts in making a decision which can be overwhelming. 

I ended up going with a BMX. Due to the 3 different lesions in my left breast, which they think are not connected but hard to tell because of my dense breast, and not having large breast (C cup) it would be difficult to get clear margins. Because of the sneaky nature of ILC this concerned me. I also have a precancerous lesion on my right breast and was told before they even found it, that ILC tends to go from one breast to the other. My BS ordered a MRI and that is when they the lesion showed up on my right side which they want to remove. The thought of having to go back in for multiple times for surgery and added stress didn't appeal to me. Also, the thought of having to constantly monitor the right side with mamos/MRI every 3 months if I chose the lumpectomy on both sides felt like it would be to much worry and stress. I'm in CA and went to Stanford breast center for my second opinion and decided to have my surgeries and treatment there. When I talked to the PS about reconstruction, if I choose the lumpectomy route, it is not the desired end result I wanted. What really sealed the deal is he told me to watch a lecture he gave on reconstruction and all the different options that I had. It was a hour and a half long power point lecture that was extremely informative and had pictures as well. He told me he did not put up pictures with the best or worst results after reconstruction but the average outcome. After watching his lecture I got depressed for a few days because the reality hit me that this was going to be much more invasive than I had originally thought. The good thing is, it helped me to make up my mind and I feel solid with my choice. I'm hoping that by being aggressive with my surgery that I won't have to do Rads or chemo after but of course we have to wait till after surgery to know for sure. My doctors feel there is a good chance I won't. I do know I will be taking tamoxifen after surgery because I'm ER/PR positive.  

My advice is to get second and third opinions if you are not sure. Make sure you find a PS that specializes in reconstruction after BMX/UMX/lumpectomy. Reconstruction after one of these surgeries is a whole different ball game then doing it for cosmetic reasons. Make sure you feel 200% confident in your team of doctors. Lastly, once you make your decision, don't look back and get on with getting better. Remember, there is no wrong or right decision, it is what works best for you. Here is the link below. I think this lecture is a great resource for woman who are having to make this difficult decision. 

http://plasticsurgery.stanford.edu/patient_care/breastreconstruction.html

Ojoyjoy

Hi, just saw your post. I am in No. Az / Flagstaff and got my second opinion at MD in Gilbert, then went to Sedona (Dr. Lindquist--the best rated in central/No. Az) for my MO, chemo, treatment etc. Could you do that?

You can PM me if you like. Lovely photo--hugs to you. You'll be okay.

I am not ILC but wanted to address your question about the prophy breast.  Federal law requires that if you have a mastectomy you have the right to surgery on the other breast for purposes of symmetry.  So, if your insurance will pay for a mastectomy for one, it has to pay for it on the other - cancer or not. I had bi-lateral mastectomies and only had cancer in one breast - my insurance did not have any issues with the decision to remove both breasts.  I did have ADH/ALH in that breast that was never seen on any imaging, so it was a good decision. The federal law does not apply to lumpectomy - in that if you have any anomaly after lumpectomy/rads your insurance does not owe you corrective action to make your breasts match, but some states do have laws that cover this.  If you want to stay on the small side and are thinking of bi-lateral surgery, you might want to consider direct-to-implant, which allows implants to be placed at the time of mastectomies.  If all goes as expected, it minimizes the number of surgeries.  There are some threads on this site - go to the search box and type in one step, or direct to implants.

Melisa, great photo ! 

I also have/had lobular cancer. Stage 3... Surgeon & my PCP were both pro lumpie. I needed chemo & rads either way. It will be one year in July since my surgery. No regrets on my decision to have the lumpectomy. 

Melisa, there's a small "community" of patients with campers and motorhomes who live right on the MD Anderson/Gateway campus throughout their treatment. I have no idea whether there are services (though I suspect there are, because the other Banner hospitals do have services for campers) or whether there's a charge, but you might want to check it out. It's a transient community, obviously, but friendly and close due to their shared experience.

Almost 14 years ago I had ILC and a unilateral mastectomy (no recon). I too chose mastectomy in order to avoid rads, but the tumor was so close to the chest wall I ended up needing rads anyway, so my suggestion is to stay flexible with your expectations. Three years later my insurance gladly paid for a prophylactic mastectomy on the other side because--ILC being what it is, which is sneaky and nearly invisible--I kept needing surgical biopsies for palpable lumps that never appeared on imaging. The pathology for the second mastectomy found entirely unexpected LCIS. Sneaky bugger! I can't say there's a lesson in that--we're all so different. But I've never regretted the decision for the prophy. Nor do I regret avoiding recon altogether. If you'd like to explore that experience a bit, check out:

http://breastfree.org

You might call the surgeon or your onc at MDA and ask about immediate recon with bilat. It's a live option if rads is not clearly in your future, but they prefer not to do that if you'll be doing rads. You asked about whether you're being realistic regarding recon, and to that I'd say there's no guarantee a bilat would give you perfectly matching breasts. There are a lot of factors that influence outcome besides just doing them both at the same time. So, better if you can go into that with some flexibility about outcomes. 

Bilat surgeries put both arms at risk for lymphedema, which is something to consider, though it shouldn't be the deciding factor. Without node removal the risk is low, but it's there. Risk reduction for lymphedema involves avoiding IVs, injections and blood pressure on at risk arms, but that's of course a personal decision. More lymphedema information here:

http://www.stepup-speakout.org/riskreduction_for_l…

Very hot in the AZ desert just now, so not ideal for either you or Prada, but important to take that into consideration. If you have a sitter walking the dog, consider RuffWear (or similar) warm weather dog boots, and plan walks for early AM or after the sun's down.

All that said, YOU CAN DO THIS! 

Gentle hugs,
Binney

Hi Melisa, Im sorry that you are having to go thru this. I just wanted to ask if you did have a mri of both breast?  My tumor was palpable but not visualized on mammo or u/s. After the biopsy came back  positive for ILC I had to do all kind of tests. The mri showed a 4-5 cm lesion that actually turned out to be multiple tumors.  So they ran other tests like bone scans and pet scans to see if it was anywhere else before we decided on what my options were. I had to have a mastectomy so I did a bilat mastectomy. If my scans had shown any metastesis than there wouldn't have been any surgery. Because ILC is so sneaky, I had to have a second surgery to remove all of my lymphnodes because my sentinel node originally showed up as negative on the frozen section test that is performed while you are on the surgery table but it came back a week later positive. I had 8 out of 15 positive nodes with invasion outside the nodes. I had chosen to do expanders during my mastectomy but they didn't work out for me. I had my exchange surgery to implants and 8 or so months later I kept getting cellulitis in my cancer side probably due to the rads I had to do. I ended up losing that breast and after 5 surgeries I have chosen to not get another one so I have an implant on the left and nothing on the right. I want you to have all the info that you need to make these decisions. I was rushed mostly by my family and friends to get it done when the truth is that what is growing inside of you has probably been there a long time and 2-3 months really wont make a difference. ILC is typically known as a slower growing cancer. I also want you to know that I had to do all of it the bilat mastectomy. Axillary dissection, rads , chemo and Arimidex. I didn't plan it that way but that is how it happened. I also want you to know that Im back at work and it has almost been 2 years and I am doing great and most of it I just don't remember. Its like its just a bad dream but you will get through it with flying colors. Best of luck to you.

Hi,

Just wanted to let you know I love my new foobs...I just had fat transfer done two weeks ago as a kind of adjustment/tweak from my BMX/recon last year.  I was of the mind "good riddance" and feel I upped my chances of survival by getting out as much of the tissue that might go "to the dark place" as possible.  After chemo the surgery was kind of a non-event, little pain, full range of movement immediately etc.

I hope your experience will be as good as mine. I stayed small, so I had the BMX and immediate recon, no expanders, etc. at the same time.  Saved my nipples ala Angelina Jolie; my PS biopsied both of them previous to the actual surgery to help me make my choice to keep them.

Claire

hi Melisa,

What a shock!  I cant advise on which chemo regimen but I can suggest you consider no chemo. Most ILC is grade 2 and very hormone responsive. If yours is grade 1 it will be the least responsive grade to chemo and lobular is slower growing than other cancers.  I am not going to tell you no chemo, but I can tell you my stats were a lot worse than yours and I refused chemo two years ago. 

Hi!  Staging and grading would be done at the time of surgery.  Right now I would gather as much information as possible - I had an ultrasound guided biopsy, an uktrasound biopsy of my lymph nodes (PET showed cancer this was to confirm), breast MRI and PET scan.  My tumor was giant - 14x12x9cm - with 2 out 15 nodes removed at mastectomy surgery being positive.  I am Stage IIIb. I did have two opinions (chemo/surgery/chemo/rad OR surgery/chemo/rad).  The two breast surgeons I saw were different in their approach and personalities - this can make a difference as your mom is the patient.  She has to live with this decision daily and be 100% all in and content with it.  My approach is balls to the wall so hence the ex-navy breast surgeon and a tough honest oncologist!

My surgeon at his hospital runs the Oncology dept Tumor Board where various oncologists/surgeons etc discuss what to do.  I felt that the feedback from the meeting about my case (yes you can get that info!) plus statistics plus where I am in my life helped formed a good opinion.  Cancer is personal.  Hard to answer what to do in all honesty.  Will there be chemo/rad?  She should get a port put in if she is looking at a long chemo - I am all about saving my tiny little veins!  Get a second/third opinion - this is a life event and more info and ideas are good!

If there are issues with MRI/surgery anxiety Xanax can be prescribed prior to the procedures.  This should be noted with the surgeons/nurses/techs - they are there to help not make patients freak!  I have major anxiety prior to surgery so I request a kind anesthesiologist and Versed (makes you not remember so they give me this waiting in the pre-op.  I am looking at ovary removal and implants being put in next year and debating on doing left mastectomy so I understand how your mom feels but having my diagnosis and small children makes me put on my big girl pants and ask for meds to ease things.

As a daughter who's mother had and died from ovarian cancer it is hard to not push a parent to do what we think is best.  I would suggest beginning to keep a folder with test results, plans, doctors business cards (even if you never go back always worth keeping the name handy), what medications etc.  As I did this 10 years ago for my mother and have found it vital as I move forward in the process now with my own health.

Best wishes to you and your mom!