ILC features- chemo, mri or surgery first??

oaklandmama

God bless you all and hope you are all doing well. My basic story: One month ago, I found a lump in right breast during a self exam, had it mammoed and core biopsied. Came back ductal carcinoma with lobular features. The area that lit up was 3 cm but calcifications spread out over 6 cm. My dr said that 'with lobular features' at my age (37) could mean that there could be pure ILC and that it would not show up on the mammo so she is giving me some different treatment options. I am overwhelmed with all the terminology and choices and need your feedback ladies...

1) get lumpectomy this Wednesday and wait a few months to start chemo then do recommended Genetic testing (I have family history) during chemo to see if I need a 2mx and radiation after chemo (2mx is recommended at my age for BRAC positive)

2) Start Chemo now to shrink lump and kill other potential cells that have spread, do genetic testing during chemo to see what kind of surgery I need. then do surgery and radiation according to genetic results.

3) have MRI now and find out if ILC has spread and to where. Then decide if chemo or surgery first. They say MRI results take a while to get back.

One big question- what is the difference between an MRI and a sentinal node biopsy? 

I know this is a lot - help me!! I have a meeting with my doctors on Tuesday (day after tomorrow today is sunday 11/6) and there is an option for me to do surgery on Wed. Im hesitant because if the cancer is aggressive, I will have to wait a whole other 6-8 weeks to begin chemo during which time Im afraid of mets.

Let me know what you all think. trying to stay positive and believe that my higher power is working for me but this is all happening so very fast and my kids are sensing something is wrong with mommy and my husband who is wonderful is shit scared (scuse the lang). feels like the world is caving in around me at times but at others I feel I will be fine and can be strong..- need more info...which is why I am here.

God bless 

barbe1958

Nothing can show if there is cancer present except if they can look at it under a microscope. Therefore, they need the Sentinel Node for Biopsy to tell for sure if cancer is present in the nodes. An MRI can't be sure.

Why don't you get the lumpectomy this Wednesday WITH an SNB? That way you only have the anaesthetic once? They can check your node(s) when they biopsy your lump. Once they know what you have going on in your breast they will be in a better position to tell you if you need radiation or not.

You can't wait too long after surgery to start chemo or it won't do any good. I hope you are seeing an oncologist! If your tumour is too big, they want to do chemo first to shrink it. The MRI should give them a better understanding but not 100% accurate on size. You could get the MRI before or just after surgery.

Genetic testing is just bloodwork. You can do that at any time.

You are not alone, many of us have blazed the trail ahead of you, so take a deep breath and tell your kids what's happening. They obviously know something is wrong and might be thinking something worse than cancer. Tell them you need to get fixed up and see if they ask more. They don't need graphic details....

Good luck!

Char2010

Once I was diagnosed with BC after a lumpectomy, they did an MRI to see if there was anything else in either breast that would need attention.  Another area showed up which they ended-up doing a biopsy on and turned out benign.  That is when they decided that I am a candidate for a lumpectomy.

oaklandmama

Barbe thanks for the response. I have thought about telling my kids but they are only 2 and 3. Will they even understand? I am leaning towards getting surgery on Wed, but I would love to get the MRI first. Not sure if that is possible...A doctor friend told me to demand MRI tomorrow so the results could be in to inform next steps.

Char thanks for the response. Im wondering how long it took for your MRI results to come back?. Your diagnosis sound like you got it early which is great. I am scared mine has been doing its thingfor a whole now...which is why I want the immediate MRI.

Gitane

An MRI, an imaging test,  is helpful to the surgeon before breast surgery because it may provide a better picture (than mammogram or ultrasound) of the extent and location of the cancer.  This is especially true of lobular because it does not usually grow in a single mass;  it's more spread out and may form several (or many in my case) smaller foci that are harder to detect. Having the MRI will also help you make a more informed decision about what kind of surgery you want.  Your doctors can explain all the pros and cons of having  your chemo before or after surgery.  

I would say (my opinion) having the Sentinal Node Biopsy (a surgery that removes a small number of nodes to see if tumor cells have gone there)  first (before chemo and before other surgery) is a good idea.  It is not a big surgery that would delay chemo if you want to do that first.  By having the SNB first you know more before you make your decisions and the nodes have not been affected by other procedures and treatments. 

Having the MRI should not cause too much delay, especially if your surgeon or oncologist help you get the information sooner.

The genetic testing was slower for me.  It's just a blood test that can be done any time, but the lab that does the testing, Myriad Genetic Laboratories, takes a while.  I don't know if doctors can influence the timing of this to help you with surgery decisions. 

Edited to add:   1. Gene Test sent in  2. MRI  3. SNB surgery  4./5.  chemo/breast surgery (decide about chemo order with oncologist and surgeon)

Shrek4

Mammogram showed a 6 cm area involved. Ultrasound didn't see a thing. Stereotactic biopsy confirmed DCIS. Breast cancer surgeon wanted MRI as he said it can't be just DCIS with this large of an area. MRI showed 10 cm area involved. Mastectomy with SNB performed - pathology showed it was a 4 cm area with many small tumors (the largest 4 mm) and DCIS, LCIS, ILD and IDC - SN with 3 mm tumor. Chemo after mastectomy and level 1 ALND after mastectomy. No further nodes affected. PET scan clear.

toomuch

oaklandmama,

I'm sorry that you're going through this but you are not alone. There are lots of women here that can give you advice and support you!

I had my MRI 2 days after my biopsy came back showing cancer and my surgeon called me the next day with the MRI results. So, getting MRI results does not have to take a long time. The results could help guide the oncologist with his decision to give you chemotherapy before or after surgery.

 For large tumors oncologists often give chemotherapy first to shrink the tumor before lumpectomy. If you have a lumpectomy but the margins of what's removed still show cancer cells, you will need to have another surgery. That might delay starting chemotherapy. But if you have a lumpectomy with clear margins, it shouldn't delay starting chemotherapy for several months. I started chemotherapy 3 weeks after my lumpectomy. The oncologist told me I would need to wait 3-4 weeks and I was anxious to get started.

 My doctor believes that the sentinal node biopsy should be done before starting chemotherapy so that you know if the cancer has spread to your lymph nodes.

 I hope that you receive guidance at your doctor's appointment on Tuesday.

susieQ610

Dear Oaklandmama 

Here is my expereince with ILC if it helps you to consider your options.

I was diagnosed this June with small mass by ultrasound and ILC by biopsy. It looked simply like a lumpectomy would be all I needed with SNB. After the lumpectomy the margins were not clear and they took out a 4.7cm mass and surgeon advised I would need Mx - I had researched things more by then and requested a MRI before going further. MRI showed more lesions in the breast so I agreed to the Mx.

Since then I realised that other options might have been available if I had slowed down and not been anxious to start treatment asap (wise in hindsight). I got a new surgeon who said the MRI should have come first to evaluate the actual size of the tumour before any surgery. MRI is best way to size a lobular tumour. I could have had chemo first to shrink tumour and maybe (no guarantee) I could have walked away with a lumpectomy instead of MX.

I have learned from the process that breast cancer is not an emergency - it takes years for tumours to grow - and the best treatment outcomes are from carefully considered decisions based on gathering all the info first.

warm wishes and best of luck with your decisions , susie 

lauri

Hi Oaklandmama -- me too!  Lived in the EastBay since the 70's.

My surgeon didn't even consider SNB -- he said he could already feel the lymph nodes -- and was open to chemo either before or after surgery.  Went in for lumpectomy, then re-excision to try for clear margins, finally MX which showed the cancer had gone throughout the breast.  Chemo plus radiation plus Arimidex for 5 years (now extended for an unknown time)

"Standard" treatment keeps changing -- many places are doing MRI then neoadjuvant chemo so they can actually see the tumor shrink from the chemo (if you get the tumor out first you just have to trust that the chemo actually worked.)

As a side note, he did NOT consider this an emergency situation -- I had a big (non-refundable) trip planned and he said to go ahead and he'd do the surgery after I came back.  His position was that the cancer had been there slowly growing for years and another two weeks wasn't going to make much difference.  Worked for me -- 4-1/2 years and counting.

Find yourself a support group so you can do this face-to-face with people who know the facilities available to you.  If your hospital/cancer center doesn't have one, I'm sending you a PM with the name of the group in SF that got me through it.

Lauri

oaklandmama

Ladies- thank you all for your support and information. You each have something good to listen to and consider. My doctor called me this evening and said she had been thinking about my case all day and went back to the hospital to really give a good look at my films and the radiologist's pathology. She told me that when she reread everything and gave a good close look at the films, a clear plan of action came to her. Based on the large area of micro-calcifications (over an area of 6 cm) which are precancerous at best, she said I am not a good candidate for a lumpectomy and that a unilateral mastectomy is recommended. She followed that with..'since you are under 40 there is data that shows that a bilateral mastectomy is also recommended" also she said that with reconstruction, they will match better if I get both sides done, but she stressed that that bilateral part is up to me- she is only recommending the unilateral MX.She said chemo will follow and the treatment will be based on what we find in the SNB, and also that no radiation is needed because the lump itself is not bigger than 5 cm. She said that the biopsy diagnosis is actually ductal carcinoma with lobular features, so it is not purely lobular for sure. She said that lobulars usually 'do well' with chemo and if we find out there is in fact nodule involvement with the SNB the chemo will take care of that. After chemo, I will be basically done except the pill I have to take for 5 years- whatever that is.I feel good about the BMX with immediate reconstruction then chemo plan, but a second opinion seems good- should I get one?BTW the radiologist who gave the pathology is one of the best of the best my area has according to a few people I have talked to...she is a breast specialist.Thanks so much!

barbe1958

If you are diagnosed already with cancer, the radiologist doesn't matter at this point. I like what your doctor is suggesting, especially considering your age. I had a bilat at 50 and now I don't have to worry about breast tissue as much as I would have. Your doc is right about being able to match breasts easier with having them done at the same time. Sounds like you have a plan!! Congrats.

karen_in_nj

Oaklandmama,

One thing bothers me about what you wrote - you say that your doctor told you that radiation will not be needed because of the size of the lump. First of all if the size is being estimated by the mammogram it may not be accurate. My doctors estimated that my tumor was 2-3cm and it ended up being 6cm. Also, if it has spread to the lymph nodes then radiation may be recommended, the radiation decision is not only made based on the size of the tumor. I think the rule of thumb is that radiation is recommended for 3 positive nodes or more. If you don't know if the nodes are positive, how can the doctor say whether or not radiation will be needed?

LoriL

Sounds like you have a good doctor with a good plan. I agree with karen_in_nj, though, in that radiation may or may not be needed. Not only do you need to know the exact size of the tumor and whether or not you have any positive nodes. But, you will also need to know if the margins are clear. I had a BMX and technically speaking the margins were clear. But, on 2 sides that "clear" was only 1-2mm, so I ended up having radiation afterall.

By the way, I've never regretted my BMX decision. My tumor did not show up on mammogram OR MRI, which is very unusual. But, I could feel it plain as day and an ultrasound confirmed it.

oaklandmama

Hi guys-

Ok so I had the full consult yesterday at Oakland Kaiser where I met with my breast surgeon, and oncologist, a plastic surgeon and a geneticist.  It was a loooong exhausting day, but the oncologist agrees with Karen in that it is not possible to see if I will need radiology until SNB. So my plan is BMX on 11/22, chemo consult with SNB results on 12/7 and probably chemo to start a week or two later. Merry xmas! haha. The second opinion I got said to do chemo first, but the kaiser oncologist disputed that many ways and said in my case it is absolutely clear to to do surgery first so that makes me feel better. For those of you with BMX how was your reconstruction?

MissSophieGrey

oaklandmama - Here you are just beginning your BC journey whereas mine is a year old.  I was also diagnosed with ILC, and in short order went from a "simple lumpectomy with radiation" to BMX with immediate reconstruction (DIEP).  I am so glad I chose bilateral AND had reconstruction done right away.  There was never that sense of loss for me, which so important emotionally.  DIEP is an amazing surgery if available to you, but there is a long recovery period to consider, especially with little ones.  I haven't looked back once and wished I had done anything differently - well, except the part about getting BC, but that was not for me to decide.  Best of luck to you in the coming weeks.

texasdonna

Hi There! I'm new and just now saw your post. How are you? Did you have surgery yet? It's all so overwhelming at first, like you're in a dream. At least, it was for me. I agree with the previous post---bilat mastectomy with reconstruction was the way to go for me. My surgeon recommended it due to the ILC diagnosis at 42. And, true to his warning, they found cancer cells in the other breast on pathology as well. I had the tissue expanders from January till July and then got silocone implants. Nobody can tell now, even when I have on a bikini. I'm a swimmer, so that was important to me. I hope you're doing well and taking it one day at a time. Remember, it's okay to cry and worry sometimes. Everybody does. But you're not alone. We've all been there and we've learned to speak up and be our own advocates. Nobody knows you as well as you do. Best wishes!