New to site and many questions

SunnyOne

New to site and many questions

SunnyOne

Hi all,

I am new to this discussion board and new to breast cancer and trying to figure this whole thing out. I have invasive lobular carcninoma with widespread LCIS and had my lumpectomy and sentinel node biopsy at the end of January. I see the oncologist in two days and I live in Canada.  My pre-op MRI showed diffuse abnormal enhancement in both breasts. Can anybody give me an idea about what to expect? I know lumpectomy is often followed with radiation but did any one avoid radiation by having mastectomy? Is bilaterial mastectomy a good option? Is chemo used or is it a good option? What do I need to ask the Oncologist? What other diagnotice tests should I be asking for?  Did anyone have to have their ovaries removed? Any information or experiences are appreciated. Thank you,

SunnyOne

Kleenex

Hi, SunnyOne -

There are fewer women with ILC percentage-wise, so it can take a while to get good responses on this forum.

You have great questions - I hope you are writing them down, because the oncologist will be very helpful in answering many of them.

You can read my profile for my experience, if that might be helpful.

I also highly recommend Dr. Susan Love's Breast Book. Very detailed (some say too detailed) and she really lays out the pros and cons of different treatments, etc.

Do you know if you got clear margins? Do you know if your surgeon sent tissue off for the Oncotype DX test? It looks at the genetic profile of your tumor and determines whether chemotherapy would be of benefit to you. Some ILC's are very slow-growing and highly hormone receptor positive, and chemotherapy wouldn't make much of an impact on them, and a hormonal like Tamoxifen is presumed to give a much higher benefit. Other ILC's respond very well to chemo - it is often used to shrink tumors before surgery. It depends on the pathology of your tumor - and probably the preference of your oncologist.

It is not always possible to avoid radiation with mastectomy - your doctor will be able to address that with you. I probably would've had radiation even with mastectomy, just because my tumor was so close to my chest wall. I was given the options of lumpectomy, mastectomy, or even bilateral mastectomy, because of the alleged tendency of ILC to mirror in the other breast. I chose lumpectomy after reading extensively that lumps in breasts are NOT what kills people - it's the spread of cancer. The long-term survival rates and risk of spread is the same for lumpectomy with radiation and mastectomy. I haven't ever seen a separate series of calculations specifically for ILC, although I wish that existed. Many women diagnosed with ILC seem to choose bilateral mastectomy due to the "sneakiness" of this type of cancer. I decided to start conservatively - I can always opt for more surgery later if I need to.

Good luck to you!

Coleen

my560sel

I have what might turn out to be a stupid question...Is it possible to have mets if you tested negative for nodes? I have a kind of "soreness/burning" in my right ovary. I've had this feeling many times in the past before being Dx. I did have US in the past and they always came out normal. Gyno always said there was nothing wrong. Now I'm worried I might have ovarian cancer???

SunnyOne

Hi Kleenex / Coleen,

Thank you for the information. I don't know if my tumor had the Oncotype DX test but I will definately ask my Oncologist. My margins showed wide spread LCIS and this is why I am so nervous. My pre-op MRI showed that there are is "diffuse enhancement and multiple areas of more indeterminate enhancement" in both of my breasts. The medical jargon is something else and I have to agree with you that it is  "sneakiness" of LCIS is the worrisome part of this cancer. I have a friend who was diagnosed with IDC almost at the same time as my diagnosis and she seems to have a more cut and dry idea about what her course of treatment will be. I am hoping I can make better sense of things after my visit with the Onocologist.

SunnyOne

nash

my560--according to Dr. Susan Love in her breast book, 30% of cancers "jump" the nodes. So, yes, you can have mets with negative nodes. Most of the women with ovarian mets who I know didn't have symptoms, though. It's like primary ovarian cancer--really hard to catch. Have you mentioned your symptoms to your onc? It sounds like it could be hormone related.

Sunny--I have extensive pleomorphic LCIS left over in my breast after the pleomorphic ILC was removed. Ironically, it's been stable, but now I've got what appears to be a new primary tumor in my "good" breast. Had it biopsied last week and will get results tomorrow. Anyhow, it's been my experience that there is absolutely no concensus on how to handle LCIS, and you're going to have to make a decision based on your own feelings of what you can live with. It's tough, I know.

theredhead

I was diagnosed in January and the biggest surprise for me was the waiting through the various tests. I had 2 biopsies One was the regular core type and the other was a mammatome that I hope never to have again. I had calcifications in my left breast that were all removed. I have fibromyalgia and chronic fatigue syndrome and pain is my constant companion. I have ILC in my right breast, caught at Grade 1. My surgeon offered the options and after reviewing the films and the MRI I decided to go with the mastectomy. I also am having the reconstruction done with a tummy tuck option as my plastic surgeon and I both are concerned about inner turmoil with my fibro and implants. My MRI showed no malignancy in the left breast so it is just the right breast with careful monitoring of the left. She is very sure I won't have to have radiation but I am not sure yet. If i do we will do the reconstruction on another surgery date. Surgery is on the 24th and there is just too much time to speculate and worry.  This is as you say the sneakiest of cancers. Every ache and pain that I chalked up to my fibro now is maybe something else? My mass is between 10 and twelve o'clock looking at me . Tamoxifen is in my future. I take so many meds now, I won't have to eat. I have been searching for someone who has fibro to see if it has been a problem during the surgery or recovery but this kind of cancer is not as prevalent and I have found no one with an answer. It is great to have a place with others who can answer questions.  Thanks

navygirl

Hi Sunny... I had IDC and DCIS in my left breast so my treatment options might be different, but I opted for a Bilateral as opposed to radiation. It was no where near my chest wall so this was an option for me. I'm glad I did because the final biopsy showed pre-cancerous changes in the right breast. I also second the recommendation of getting the OconoDX as it can give you a clearer picture of what you need to do. Best of luck with your meeting...write your questions AND answers down...

my560sel

Just wondering if there are any women out there who had a low score on the ONCOTYPE test, didn't do chemo but did radiation and Tamoxifen (</>5 years) and had METS??

my560sel

Confused about pathology report - it says" for ER+ (moderate staining in about 100% of invasive cancer cell nuclei and for PR+ (moderate to strong staining in about 100% of invasive cancer cell nuclei) .Then it says negative for HER2 NEU overexpression score =0

What does e-cadherin weakly immuno - positive mean??? Is this good or bad??

Any help would be greatly appreciated. My doctor didn't explain any of this to me except to say it was "good" and not to worry !!... I had my lumpectomy and he's now on vacation for 2 weeks. I'm meeting with him on Mar 26th for the results of the biopsy (I know already there was no node involvement) but am wondering if anyone can explain the above terms??

Terri

Hood1980

Hi Terri, I'm not an expert that can answer your pathology questions, but I know you can call the American Cancer Society with you path report and they will go over it in detail with you.  They helped me interpret mine.  Best of luck to you.   What is your oncotype score?

my560sel

Hood1980 - I don't have an Onctopye score yet. I didn't even know it existed until reading threads on this site. I'm going to ask my surgeon to have it done when I see him on the 26th. Hopefully it's not too late to have it done.

Terri

my560sel

hi

kyra

hi sunnyone my heart goes out for you l was DX Dec 07 all l was told was l had cancer and needed to have a lumpectomy l came out xmas eve and 2 weeks later  l was told by my oncologist that l was being referred to  another hospital as l had DCIS & ILC grade 2 but the ILC was very agressive and sneaky, so l was best to have mastectomy which l had done 4 days later, it was terrible shock but l am so glad that l did have mastectomy as l was told it was 7cm and there was a nasty infection , I was ER Positive HER 2 Neu After that l had Fec 6 chemo then Radiation l am now waiting for BCRA 1 & BCRA 2 tests as my mother & sister had BC but different kinds but might have to make another choice of another mastectomy then hopefully have double reconstruction, long road but just another hurdle, l was like you did not have a clue but thank god we can all help one another

dutchgirl1

Hi I wasDiagnosed July 2003        i was told i have invasive ILC one posivtive node stage 2 grade 2 did have chemo ac  25 Rads and arimidex for 5 years I am doing great I am 66 years old ,      if I were you ladys be aware It can come back no matter what we do.Al ways check things out Good luck to you all

caligrlof68

Hi Sunnyone, very sorry that you had to join us here..but welcome anyway. You will find a lot of information and support here. ILC, as I have come to find out, is generally treated just like IDC. In studies they tend NOT to differentiate between the two of them. The other gals who posted first are right...ILC does tend to mirror in the other breast. It's also difficult to detect with conventional tests(mammos and clinical exam) until it's much bigger than IDC. This is generally  because ILC grows in single file fashion...one cell after the other. More like threads than an actual Lump.  Because of this I have opted for a mastectomy of the affected breast first, and then later on when I am ready for reconstruction I will have a prophylactic mastectomy of my presumed unaffected breast. I say "presumed" because I have not had any biopsies on that side YET. My path report showed extensive LCIS throughout the breast as well....I can only assume it's in my other breast as well. Like a ticking time bomb waiting to spread. I've had chemo for the first occurance and I never want to have to do that again. For me, Bilateral mast. is the way to go. It's a personal decision that seems to offer me a bit more hope and peace in my future life. 

My biggest piece of advice...be careful what you read on the internet. Not all of it is accurate and some of it is downright frightening!  

tabby

Hi SunnyOne:  Sorry to hear of your diagnosis but this is a great site to get some information and to help you decide what's best for (along with the other info from doctors, etc.).  It's also a good outlet to "talk" to others who are experiencing similar situations as yourself.  I was diagnosed in Jan. 09 with LCIS through a biopsy (for calcifications).  I was then given an MRI and ultrasound later after the MRI showed a fibroadnoma.  Two years prior I had had calcifications in the left breast and a fibroadnoma in the right.  I had the fibroadnoma removed and the calcifications biopsied (both were benign).  This time the diagnosis of LCIS but the calcifications were again benign as was the fibroadnoma.  However, unbeknown to the BS she had removed a small stage 1 ILC which pathology found (they couldn't believe what they had found).  I just found out this past Friday.  I had already made up my mind that after the surgery (if it reconfirmed the LCIS) I would go through with the double masectomy.  My worst fear was hearing I left the "girls" on too long and now cancer had developed.  I also couldn't take the constant worry, meds, rads/chemo (although that may be coming, I don't know).  How did you come out with the sentinal node thing?  That's next for me after seeing a couple of plastic surgeons.(I could have opted for lumpectomy with radiation, but that wasn't for me.)  Also, my pathology report stated LCIS in every side of everything removed and calcifications and microcalcifications.  The stage 1 cancer--no one wants to hear that--but in a way it was a relief as it helped make the decision--and now everyone is on board--refreshing!  My prayers are with you and all of us.

TBB

HI to ALL with the sneakiest of cancers.... This is all new to me also and my positive thoughts and prayers to everyone.. This is my "short story" from the beginning through today.  Last year had mammo and came back negative.  October I discovered lump myself and had mammo follow up with ultrasound a week later and both came back negative.  My right breast was an entire mass that I could feel.  Waited through holidays and went to OB/GYN in January.  He sent me to general surgeon who did a biopsy and came back benign but some irregular cells.  I went and got a 2nd opinion from a surgical oncologist.  Had MRI rt breast and came back benign.  So to date everything I had done was negative.  Did another biopsy but more aggressive and came back ILC... who would have thought. Decided to go with radical on the right and modified on the left.  They found a 6 cm on the left and 6.5 cm on the right. Sentinal on the lt was + and 9 on the right were +...this was 2 weeks ago.   ER/PR +/ HER-2 neg... I still have my drains in and opted for tissue expanders.  What a whirlwind....WOW is all I can say right now... Is there a discussion board on the day you come home from surgery from this type of cancer???? I am sure we have some insights on what to tell the newly diagnosed.  Can anyone recommend books for what comes now? 

Thanks for the help,

TBB

Texas357

I was searching this site, and found this discussion which is exactly what I had on my mind. Do insurance companies generally pay for a prophylactic mastectomy if you've already been treated for ILC in the other breast? I'm currently undergoing chemo, and because of the rads won't have reconstruction until next November. I'm seriously considering asking if I can do a prophylactic mastectomy on the "good" side either at the same time as I get the left reconstruction or before, so I can have both finished together. But I don't want to fight for insurance benefits.

ann-idiot

Texas357 - All I can say is my BS told me that due to the fact it's ILC (not IDC) there is good argument for prophylactic. ILC is more likely to show up in the other breast, and the "finger-like" spread seen with ILC makes it harder to get clean margins. There is also the psychological and emotional well-being of the patient who feels she needs symmetry and also assurance that she'll never have to go thru BC again. There are good reasons for insurance to cover the procedure. I'd have your BC and plastics submit the claim, they know how to word it. It's not the same as getting a nose job or tummy tuck, it's more for health reasons and general sanity than vanity.

TBB

My left side was the good side and I was doing prophylactic and they found a 6 cm tumor inside that none of the tests would pick up.... This is a very sneaky cancer.... So my decision was easy anyway from the beginning... best of luck!

sakura73

At biopsy I was diagnosed with IDC and an MRI showed only the one lump but after the first lumpectomy it turned out to be multi-focal ILC which had not showed up on the mammogram or MRI or ultrasound and which had spread to the sentinel nodes.  Sneaky indeed.

Fortunately for me, on re-excision (my surgeon encouraged me to give my breast another chance before getting rid of it!)  I did get clear margins, and the other nodes were clear. So I still have my boob and am about to start chemo, which became non-optional after the node involvement was revealed. 

Texas357

Thanks for the insights. I see my oncologist next week and I plan to ask him about this.

kyra

hi texas how did you get on with your oncologist, l see you have the same as me and are HER- thank goodness your lymph nodes are clear which is good, l am waiting on genetics test to see iof l have to have ovieries out and with ILC l was informed it always come back at some point so l am in the process of waitng for results and l shall have my other bust off, l had right mastectomy in feb 08 and my mother & sister had it BC to but they were different types, its all a nightmare.

best of luck

kyra

cat08

Hello Everyone,

I was diagnosed Jan 7th with ILC and DCIS in my left breast after having part of the breast removed in California. Because I had received what I felt was not very good medical care, I switched facilities to MD Anderson in Texas. Once I was there they confirmed that I had cancer still remaining in my breast and that I needed a mastetomy. Once I have the matectomy on my left breast, then I will find out what kind of treatment (chemo, tam, etc...). 

 This has all been very stressful switching hospitals and basically traveling from California to Texas. I am wondering about something though. Since I do not know what it is like to have total mast, and I am very worried about the cancer spreading, I am wondering if anyone can chime in with their beliefs on this. I still have my breast, but I wonder if I should look for another opinion. However, I feel like they gave me the best advice given that ILC is multifocal. 

I guess I just do not know what to expect and am wondering if anyone can help me understand what the next steps are going to feel like. Whether traveling on a plane is going to be horrible, etc...

thanks in advance. xo

Seabee

Hi cat,

If M.D. Anderson thinks you need a mast, you probably do. If you want firsthand accounts of people's experiences with them, you might try the surgery forum on this board.

As for plane travel, it's crowded and often boring, but it's also efficient and relatively safe. The first few times it can even be fun. These days I usually work crosswords to pass the time.

ktn

TBB-  My story is very similar unfortunately. I felt a thickening on my left breast and my MD also felt something on my right one- both turned out to be ILC. I had 4+ nodes on left and 5 on right. I just turned 50 and had mammograms (all normal) for 10+ years. Since both breasts were involved it was easy to decide on a double mast. It was recommended by my BC that I have the expanders placed. Due to bilateral tumors and the sneakiness of ILC, tram flaps might hide a recurrence and the expanders would push anything forward he felt. I did the AC and Taxol X8. It was doable but I was on a LOA from work during the time. I had treatments every 2 weeks, rested when I needed to and did fun stuff too when I was up to it. I started Arimidex last month and will have the expander exchange late summer/early fall (I had 5+ weeks of bilateral radiation so need to wait til all is healed). My advice as I look back at the treatments? Try to stay positive and take care of yourself. This is the time to take to help your body heal. At first I read all the books about breast cancer but after awhile I wanted to read the survivor -story books. Now I am back at work and trying to look ahead. You already made it through the surgery so your part way done! Good luck as your chemo starts. Kathy

SunnyOne

Hi Tabby,

Thank you for sharing. I will be having "the girls" off next week. It has been a very difficutly decision and but once I made it I knew I was making the right decision for me. The "funniest" thing was that when I started to tell people of my decision that have all said that they were so glad that I had made the decision to go ahead with the bilaterial mastectomies. Even my GP told me this! I have been started on Tomoxifen and have been asked to participate in a drug trial that is looking the prevention of bones mets. I am terrified of surgery, mostly the anaesthetic, but I know I will make it through.

SunnyOne

ktn

SunnyOne- I had never even had an iv in before let alone a surgery before my mastectomy. I found everyone at the hospital was so great about explaining everything. Since I was asleep for the surgery it was hardest for my husband waiting and worrying. They often give medications to relax you before they even start anything.

I believe you may be in a trial for Zometa. There is alot of info on this site about it. I get it every 3 months and started last month without problem. It helps increase bone loss and had been given for different cancers that spread to the bone. They started thinking it actually helps prevent mets and trials are happening now. I think anything I can do to help my chances is good!

Best of luck on your surgery and keep us posted!