Types and timing of follow up after finishing ILC treatments?

beachwalker54

Hi ILC ladies-

I am confused as to what the "normal" protocol is for followup after surgeries and rads.  My lump did not show up on mamo or ultrasound and my surgeon, who is widely known at MGH, said I would have MRIs.  When I recently called about what is happening next, the nurse said they would schedule me for a bilateral mamo in Feb 2014, one year after the first one.  I was not happy to say the least.  I called back and spoke to the PA AND REQUESTED an MRI so now that is booked in Aug., 6 months or so after my first MRI.  So now I have been waiting for 2 days for the dr. to call me to discuss this.  I thought ILC is tough to find and my doc told me MRI would be used for follow up so what's with the mamo?  I would think a mamo in 6 months and in a year the MRI to see if any of the junk has returned. 

Your experiences and any thoughts would be very helpful.

thanks!!

beachwalker54

momand2kids

Hi

my surgeon is at MGH--but I was treated at Farber...right now I have a mammo, then 6 months later an MRI.... not sure what the protocol will be after the 5 year mark in October--scheduled for an MRI in September..... my mammo was also not predictive-- had one in March 2008-yet there I was in October with ILC

beachwalker54

Hi momand2kids

could you tell me what you had after your dx first, was it mri or mamo and was it 6 months after your first one? 

also, did you find your lump like I did?  After I found it neither the mamo or ultrsound could pick it up. 

Why Dana, did you  feel they would provide better treatment?

Still waiting for the surgeon to call me back about this since Monday! really upset that they didn't provide me with followup plan right after surgery.  My friend who goes to dana was given one so she knew what to expect and could ask questions while still there.  this waiting for the dr. call really is frustrating!!

Anonymous

My insurance company insisted on mammos before MRIs. It could be an insurance thing.I thought it was stupid too, since mammos didn't catch my original tumor. 

Now that my BMX recon is complete, I don't have to worry about that anymore. I'm relieved.

momand2kids

could you tell me what you had after your dx first, was it mri or mamo and was it 6 months after your first one? 

I had a my regular mammogram in March of 08--- my pcp found the lump in my regular physical in October 08.  I wanted a specific surgeon at MGH and she required an MRI prior to meeting.  

After my treatment ended in May of 09, I think I had a mammogram that fall, then an MRI 6 months later- and that is what continues to happen.  I went to Farber because there was a specific oncologist and radiation oncologist I wanted....

I think that they sometimes just want the dust to settle before they get you moving on a plan.  I was really anxious about a follow up plan, was trying to plan it during chemo--they had to work hard to get me to slow down a little.... and it did work out. But the waiting on everything is so very hard.....

Easydancer

I am also a little confused...had a mammogram last Wednesday, negative. They said mammo in 1 year. My radiation oncologist had said Mammo  6 mos then MRI 12 mos and so on for at least two years. I will see him next Tuesday and get it cleared up...I want the MRI as ILC is hard to see on mammograms! and Im not willing to take the risk...I also think it may be an insurance issue...mammograms a lot less expensive, free to me...MRI's much more expensive to them and to me.

I also didn't get a survivorship care plan so contacted the KU Cancer Center and they have appointed a Nurse Navigator to work on my behalf to see that gets done...I am anxious, especially since ILC is hard to detect and frequent to recurr...("a sinister and stealthy marauder..." to quote one BC researcher,) that I be vigilant and very proactive.

Last Sunday night during monthly BSE I found scaly, crusty skin patching on the same nipple as where my cancer was and was very alarmed, but MO's NP advised she thinks it was a reaction to something at mammogram...but to watch it carefully for the next months or so...if it comes back, call office immediately. Waiting for things to happen is not my style!

PS: Does anyone know the areas for greatest risk of recurrence of ILC? I also have endometrial hyperplasia but it has tested negative after a D&C 2 weeks ago.

beachwalker54

Hi Easy-  I finally heard from my surgeon and she said that she recently read a study that reports that ILC does not recurr often and if a cancer comes back it is usually IDC.  this was new to me.  She said we have to have a mamo every year and if anything is noticed or felt during the clinical exam(s) then an MRI would be given. 

When trying to decide whether or not to have a MX or rads, I decided to do the rads (really didn't want the breast removed) because the dr. said that it would show up on an MRI so not to worry.  Now because of her recent study she says I only need the mamo once a year unless we find otherwise. 

I have an appt. tomorrow with my MO and will try to get more info from her.  Hope she doesn't say I need to speak to my surgeon.  I almost wonder of I need to get another opinion.  My surgeon is very well regarded as far as I know.  I am running out of energy from all of this.

I am also dealing with my 32 year old daughter who has chronic lyme disease and may get put on IV antibiotics for awhile.  Oh, it's all so time consuming!

beachwalker54

momand2kids- 

your plan sounds right to me, 6 months a mamo and 6 months later an MRI.  I thought this was going to be my plan but just mamo now in a year.  What my surgeon says now is so very different than what I thought about ILC.  It's all very unclear to me now and am not sure what to believe anymore.

beachwalker54

Easy-

please watch that crusty patch.  this being a result from a mamo just sounds a little unusual to me. good luck with this.

the nurse navigator sounds like a great plus for you.  I think I could use one.  Everything you stated about the ILC being sneaky, hard to find is always what I thought and therefore I want MRIs.  will have to find out more info. and be more proactive about this I guess.

sorry that I don't know where the greatest risk areas for ILC recurrance are, if any in particular.

beachwalker54

mom- 

just wondering why you had chemo, your dx is about the same as mine but i am PR-.  Was it your onco score?

momand2kids

Hi

I think my onc score was around 25 or so--gray area-- I decided to have 4 rounds of chemo--- just made sense to me..... 

I think the issue with MRI's is that they often show false positives---- and then things have to be tested, etc.  Plus they are expensive..... I am not sure I will get an annual MRI after next year..... maybe every other year?  just not sure yet..

beachwalker54

good morning mom,

so glad that you are almost 5 years out already.  I think I am going to try to insist on yearly MRIs  because of my lump not visible on mamo when I found it.  I am really nervous about this change in plans.  Will see what the MO says this morning.

my onc was 21, lower gray area I guess, and my MO really dicouraged me from chemo.  She said the risks outweighed the benefits in my case and would give it if I really pushed for it.  I was afraid of it anyway so decided to go with her advice.

sgreenarch

Hi. Thanks so much for bringing up this topic as I'm wrestling with it just now. I made my own plan, insisting on a yearly MRI with a mammogram in between, six months later, also yearly. Truth is, that means I'm stressing about scans every six months. At my last onc visit in June, I saw a different onc for the first time (my onc is on sabbatical.) he asked why I am getting a mammogram at all since the MRI is so sensitive. Thinks I don't need the mammogram, just the MRI once a year. My radiologist agrees. I'd be thrilled but also nervous to skip the mammogram. My ILC was actually caught on a routine mammogram, I had no lump, nothing....



I do wonder if there's any reason to have that mammogram since the mri catches things early and the mammogram is extra radiation (and stress.) Anyone?



Thanks, Shari

Easydancer

Sgreenarch, I see my radiation oncologist Tuesday and I am going to ask him specifically...I also checked the report from my most recent mammogram...Right Breast: "Extremely dense Tissue; Left: Moderately Dense. That might have something to do with MRI & Mammogram as mammos are more difficult to read with dense tissue and MRI and/or Ultrasound pick up the abnormalities much better.

For now, just 6 months out, I would rather have the tests more frequently for at least the first 2 years, then maybe back off to 1X/year for the first 5 years...the more time that lapses, the less risk of recurrence...at least that is what I understand.

Thanks to everyone for their responses to me...everthing helps sooooooo much. Just like a little "private coffee clatch"!

beachwalker54

Still pondering with my conversation last thursday about follow-up.  I agreed with the surgeon to now have mamo next year and clinical exams every 3-6 months.  Now I am upset with myself for agreeing because I still think MRI shows up ILC better than any other screening. Why take the risk with the new study? 

my MO wrote to her during my appt. on fri. and I am very embarrased by my indecisivness.  First I agree with the surgeon (possibly I think, to appease her ) and the next day I am again feeling anxious about it. She will think I am crazy!  I know people say to just put trust in your dr. but sometimes it's very hard. 

good day all.

sgreenarch

You are allowed to be indecisive. You are allowed to be anything. You have the right to change your mind and call back. Pushing for a yearly MRI is reasonable w a hx of ILC.



It's all a lot, and very confusing. Cut yourself some slack...

lekker

Beachwalker please don't worry about your indecisiveness. It's hard to find two oncologists who agree on these decisions - how do they expect those of us who didn't even go to medical school to know what to do? Go with your gut.

momand2kids

I think it is worth remembering that plans can change.  At the very beginning, I gave my onc an excel spreadsheet with what I thought should be the follow up.  And I had a mammo, MRI, 2 onc visits, one PCP visit, one gyn visit.  So, I thought that 6 times a year, someone or some technology would be watching me.  My onc agreed, but told me at some point I would only see her once a year and that the MRI might not be annual.  I will see her in the fall at the 5 year mark and I expect we will have this discussion again...

But even if I drop down to once a year with her, I still have the PCP and gyn doing clinical exams, along with the onc once a year and the two technologies (or one and one every other year if the MRI is not approved annually).

In the beginning, I never would have accepted that.  Now, I feel more comfortable with my prognosis and my care and my own ability to know my own body.  I think we all get to be indecisive and change our minds on these things.  

But do know, it will subside over time and life will be more than normal again!!

beachwalker54

Thank you everyone for helping me believe that I am not crazy!  After the dust settles awhile, if I don't receive a return phone call, I will again pursue an anual MRI. also it's less radiation and I have had tons in my lifetime already.  Unfortunately the drs. intimidate me. I  NEED to get over that. this is all so new and so not an exact science and like you mentioned lekker, why can't we change our minds when the drs. do it all the time.

sgreenarch- I so need to cut myself some slack.  thanks!! (btw, i know a lot of people who moved to Israel and my boys spent time learning there) don't recall all the places though

mom- your plan at the beginning of your treatment was the same as I thought mine would be and bacically is.  only difference is that now she wants to do mamo in a year instead.  I hope to change that.  I will also see my pcp. gyno, MO every 3 months with a clinical exam and once a year the MRI (hopefully) with a visit with the surgeon right after that. I am missing the 6th month mamo. but there has been no mention of one.  I had the nipple-areola complex removed for clear margins and that is still healing along with the rads. This maybe why they aren't doing a 6 month check, forgot to ask.  Eventually maybe i will also have 2 techs a year.  I feel very confident with my MO.  and I just saw her last friday.

Today I had a real treat, a massage!  I had a gift certificate and used it today before I leave tomorror for Florida for 2 weeks.  My father, brother, 2 sons and grandsons live therel  School is out for the boys and myself so I figured it's a good time to visit, as long as there are no hurricanes. lol  plan to go snorkling, jet skiing and spend some overdue quality time with my little grand babies.  So looking forward to itl  just have to pace myself so I don't get too tired which has happened at home since rads and AL med.

to all a good night and a nice day tomorrow

Easydancer

Just came back from appointment with my Radiation Oncologist. My plan is MRI in January, 2nd Mammo is July. He was going to go with Mammograms but I asked about MRI because of ILC. He told me that since my cancer was picked up first time by mammo it was a good sign that it would be picked up again my mammogram but it is true that it is harder to see ILC on mammogram and that is why they did Ultrasound and MRI to comfirm size and location in Jan before surgery. Also, breast tissue density does make a difference...my right breast is RAD 4 (extremely dense), left is RAd 2 (moderately dense)...MRI reads better with denser tissue than mammo.

So we decided to go with MRI if my insurance with pay annually 12 mos (Jan), mammo annually at alternate 12 mos interval anniversary (July) and he will let me know what insurance says. I am comfortable with that. That will continue until 2 yrs. anniversary...Jan. 2015.

Otherwise, Says I'm doing GREAT!!! Yea! That feels so good...Good news from all doctors all the way around...see my MO end of August for 3 mo followup from June.

gavinsgrandma

Hi easydancer, First of all may I steal your quote" A sinister and stealthy marauder " it is!!!!!!!!!! 3 mos ago I had no idea what ILC was, I was Dx on 5/31/13 with ILC, no family history, no symptoms and no sign of the beast 2 years ago on mammo. I sit here tonight 2 weeks post -op on Thursday. Port in my chest starting chemo in 2 weeks and rads after that, not to mention 15/15 positive nodes at surgery and TE'S put off until all chemo and rads are done. I am assuming a lot of what I am reading is due to insurance but I am living proof that you do not mess around with or second guess ILC!!!!!!! So my advice be persistent be aggressive and fight for your lives because if you don't who will.



Shary

Easydancer

Hi, Gavinsgrandma:

Good to hear from you. I'm always glad to talk with fellow ILC patients...we are a minority. I, too, believe strongly that we have to be exceptionally vigilant and proactive during our treatment and recovery...everything I read says that because of the way it grows it is more difficult to pick up on traditional imaging...single file and branching and in flat spreading "sheets of cells", as opposed to clumping and hard lumps. That is why is often feels like a slightly indiscipherable mass or thickening of the tissue instead of the traditional firm lump that most women expect to find. That is exactly how mine felt...different than anything I would have expected, but I did find it...the night before the mammogram did!

I was extremely lucky...the ILC cells were in my lymph system...literally "nipping" at the sentinal node, had barely arrived, another few months (? or days?) and I would have had to have chemo...fortunately I did not. Did have to Radiation...Ouch! Thank you very much.But I got through it pretty much okay. Finished up three months ago...doing great now. Being very proactive with some related issues...more about that later.

For research, I recommend Johns Hopkins, NCI, ACI, Mayo Clinic to just name a few. For fun, I like to go to Bing Search Engine and go to Images, type in ILC Cancer and see actual pictures of the ILC cell and the growth patterns it takes...very illuminating. I printed a picture of the cell and put it on my bulletin board so that I could focus on "the enemy"...its a prickly little devil. It helped me to fight because I strongly believe in visual imagery in self-healing and meditation, along with journaling.

So much for my journey, let me know how you are doing and if I can do anything to help you on the "Journey We Did Not Choose"...I am not far ahead of you, but I vividly remember your pain and fear and can still feel how you are feeling now, as we all can. Draw on us for strength and comfort. Okay? There is so much to learn and it is so overwhelming but we can help you with it.

Easydancer

Sorry, that was National Cancer Institute, American Cancer Society (ACS)....didn't mean to mislead anyone. They all have great web sites for ILC.