Whats your ILC story?
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SeaShelly,
I have a similar diagnosis, and the recommendation was lumpectomy and rads, I realize every case is unique, but I'm wondering why your treatment plan included BMX, even though you are at stage one with negative nodes. I'm still mulling over my own treatment plan and I'm finding it helpful to learn how others arrive at their decision for how to deal with this diagnosis. There is no right or wrong path, I think it's a matter of getting enough information and feeling comfortable with your decision. I'm in the information gathering mode now.
thanks for posting -- I appreciate your sharing what is very personal information for the benefit of all the ladies here who are on a similar journey.
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I, too, am Stage1 ILC with no node involvement. I have a strong history of bc in my family (mother, sister, and both of my maternal aunts all survivors) but am BRCA-. I got a mammogram every year since I was late 30's. This year my OB/GYN asked if I would consider an MRI since I had such a strong family history. I said I definitely would. That woman saved my life. She fought with my insurance company to get it covered and the MRI found 3 tumors in my right breast. I had an ultrasound a week later and a vacuum-assisted biopsy two days after that. All 3 tumors were ILC.
Since my ILC was multi-focal (as it can tend to be) I was told that a lumpectomy would leave me so disfigured that it really wasn't an option - I had to have a mastectomy on my cancer side. I was told by everyone that having the other breast removed was my decision. I was told that ILC tends to spread and almost always spreads to the other breast. It is non-aggressive - so it would take a while - but that it spread. Since I only found this cancer by an MRI I was not sure how successful I would be at finding it again in the future. Even after they told me exactly where all of my tumors were neither my husband or I could feel them with self-examination. To me it was a no-brainer.
I had a BMX with DIEP on 6/14/2011. I don't regret it at all. I'm glad that I'm not going to have to be doing all of that screening for one breast. I'm glad that I have the peace of mind that I do now. BTW they did not find any cancerous or pre-cancerous cells in the other breast, but I'm still ok with that. Although this was a good decision for me - I'm sure it would not be good for everyone. But everyone has to find what they are comfortable with.
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Hello - I don't post here often anymore but I wanted to in order to encourage all of you and especially those of you with pleomorphic lobular cancers. I was dx in 2003 at age 44 with PILC with node involvement. I had read the studies on this cancer which were mind numbing at the time but very outdated. New studies have shown that women with PILC and also HER positive respond remarkably superior to Herceptin than women with IDC do. In fact, in a study of four women with advanced PILC, the Herceptin destroyed all of their tumors and the researchers are beginning to conclude the women with PILC HER + tumors do much better than women with IDC and HER 2. I have no idea what the future holds of course, but I am grateful for each day I have and appreciate all of the brave women who have helped all of us.
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Snicklefritz-Thank you so much for coming here and posting. It is so fabulous to hear from someone with PILC who is 7-8 years out. My diagnosis is PILC but my tumor was HER 2 negative. I'm not sure what catagory that puts me in. Still it's great to hear from someone who's thriving after many years. THANK YOU!0
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Hello Toomuch! Yes, I too was HER negative and ER and PR+. I would say that your particular situation is exceptionally good with a much smaller tumor and grade 2. I know several women of my own acquaintance who had many positive nodes and are years further out from diagnosis than I am. The use of Herceptin as I said in my previous post, has also made prognoses for HER 2 + women with PILC so much better. I have a 17 year-old daughter and my hope is that there will be a vaccine within the next ten years perhaps similar to the cervical cancer vaccine that can prevent this disease in future. Researchers are getting closer and closer I think.
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Toni_S,
I opted for a BMX for several reasons. First, because I really didn't want to do radiation. I felt that going to the cancer center 30-35 times would just be an added constant reminder of my situation plus the side effects. Also because ILC tends to spread to the other breast and with mine being so dense, I felt I would be constantly paranoid about all the lumps and bumps. On the vanity side, I figured that if I was going to have reconstruction anyway, I'd rather have it on both sides. (My size D's were extremely droopy and well used after nursing for a total of 5 years). It sure is strange being flat chested now but I haven't regretted my decision. I guess knowing it's only temporary is what gives me more peace of mind. I'm in information gathering mode too and most days lately I go into info. overload but I strongly believe that information is power. We will get through this!
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I opted for BMX because ILC is very bliateral and basically I don't want to keep going through surgeries that benefit everyone involved BUT me. I sound cynical but all too many people have started with lumpectomy to then have lateral mastectomy and finally the other side removed. It's stress for the Cancer patient and I have a little itch to make sure no one is profiting unnecessarily from my suffering.
Everyone has to make their own decision on this as it's your body. I don't think it's fair on other hand to minimize that these procedures are anything less than amputations. It's a very personal decision. I at least don't have any regrets about course of action I chose but obviously for the personal reasons I listed above.
I also have TE's done at same time and it's allowing me to cope with this process and disease a lot better.
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This August will be one year from my BMX for ILC. The doctors I spoke with and the research I did on my own suggested that either way (lumpectomy & rads or BMX) would give the same mortality rate but also showed a higher recurrence rate for ILC vs ductal. I also had a strong family history (which I wasn't previously aware of). Even though nothing was suspected in my healthy breast I chose to have them both removed...I did not want the constant worry and the aggressive screening that would have to be done and live with that feeling of dread that it would show up in the other breast. After my surgery the pathology came back with 2 different types of pre-cancerous cells in the "healthy" breast...so I was very happy I chose that route. I elected to have implants for my reconstruction and now that I am done with that I am relieved that both breasts look the same...I know I would have had to have surgery on the healthy breast anyway just to get them to match and I would have obsessed about asymmetry forever otherwise.
I think we all agree it is a very personal choice and there are probably just as many women who chose the opposite of me and had success and are happy with their choice. There is not one right answer...everyone and their circumstances are so different. Just do your research well, make your decision and don't second guess yourself.
Thank you everyone for posting it is always so good to know we are not alone in this!
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DMD, Congratulations on getting through that first year. I had BMX, chemo, recon with implants, too. I really like to hear that people are coming out the other side of this diagnosis year and beginning what I think of as a new life post-BC. You are right, it is good to know we are not alone! Hugs, G.
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Hi: So went for a routine mamo and they told me to come back for an US and then told me to come for a biopsy 10 days later. On July 20th 3 days before my 49th birthday I was told I had ILC grade 2. Saw the surgeon and he said it was so small less than 5mm that they probably got it all with the biopsy he wanted to do a lumpectomy just as a precaution. Well I started to research and read all the stories and told him no I wanted a BMX. He said that was a bit radical for my diagnosis but it was my body. Since I was told it was caught "so early" it would not be in the nodes I could have immediate recon. So on August 10 2011 exactly 2 weeks from dx I had a BMX with alloderm all in one recon and guess what, was in 2 of 18 nodes and had spread to the tissues of the breast. I am so glad of the decision I made. Now I'm waiting for the oncotype to come back to see if chemo would be helpful. I just say research, reaearch and reasearch - finally follow your instincts its your body!!!!!
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Failed my very first mammy with ILC found on left and calcification cluster on right. Decided to do BMX with t/e & reconstruction (scheduled next month) as I too only want to do this once if at all possible. Hate to seem overly cautious but have decided that you can't put a price on peace of mind ....
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dixiebell and odie16: So sorry you find yourselves here
. I was diagnosed with both ILC and DCIS in the same breast, but also opted for BMX after some research and discussion with my breast surgeon (who fully supported my decision). My cancers were also very early. Fortunately, lymph nodes were negative, but a second area of lobular neoplasia and multiple areas of ADH were found in the same breast at surgery. Lots going on in one breast, nothing in the other. I figure it was just a matter of time. Oncotype of 18 and the negative nodes meant no chemo for me. My best to both of you!
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My ILC story started in March with a diagnosis after routine mammo. Excisional biopsy showed two tumors, 1 cm and 4 mm, richly ER and PR positive. My surgeon recommended lumpectomy and sentinal node biopsy and I had that surgery the end of April. Well, the good news was that I was node negative and stage one. The bad news was that the lumpectomy specimen contained a previously undetected 6 mm tumor, not picked up on ultrasound or breast MRI. My choice was either another excision to get clear margins or mastectomy. My surgeon, who is with a local community hospital recommended mastectomy, and I was leaning toward BMX. Because I wanted more reconstruction options than were available at my local hospital I switched my care to Fox Chase Cancer Center in Philadelphia.
My consult with the fox Chase surgeon was a complete game changer for me. After reviewing all my pathology and imaging he strongly recommened another excision, radiation and hormone blocking therapy. Turns out that the 6mm undetected tumor was visible on the MRI but missed by my first surgeon. Knowing that imaging was able to detect that surprise tumor gave me enough peace of mind to opt for the less drastic treatment. And a low oncotype score helped too. As my surgeon explained, the five years of follow up hormone blocking therapy has been shown to be very effective in preventing recurrence or new tumors in ER positive cancers, and lumpectomy and radiation is actually more aggressive treatment than mastectomy alone, which he thought was "overtreatment" in my case.
Everyone's decision is a personal choice, there is no right or wrong answer, but for me it felt right not to go to the most drastic treament option if it was reasonable to do otherwise. I may end up with a BMX down the road or I may not, but I'm betting on the not. I know two women who had mastectomies and a recurrence of their cancer on chest wall and rib. And lumpectomy offers no guarantee either. We live with our choices and hope for the best.
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I realized I hadn't posted here in a while and a lot has gone on since I first posted. After MRI, bone scan and blood test and an axilla node biopsy and talking to multiple DRs, I decided on BMX with immediate recon with TE's. I had the surgery on July 21, 2011.
I have had a few problems along the way. About a week after surgery, I developed an infection on the right side near the drains. It cleared up within a few days of getting a new antibiotic, but the output on one of the drains increased dramatically. At about 5 weeks post op, I had 1 drain remaining on the left and none on the right. I developed a seroma on the right so I had surgery to drain it and to add a drain back to that side. I am now 8 weeks post op. I STILL have the original drain on the left and the new drain on the right. The one on the right will probably come out Monday as long as the output stays below 20cc's. The one of the left is still between 40 and 50 per day, so not sure when that will come out.
I had 9 lymph nodes removed including the sentinal nodes on both sides. All were negative. The biopsies of the additional breast tissue showed pre-cancer on both sides as well as lobular and ductal hyperplasia. I feel the BMX was absolutely the right thing to do. As my lymph nodes were negative, I won't have to have any chemo. (Yeah!)
I came out of surgery with fills of 250cc's on the left and 300 on the right expanders. I have had 4 other fills to date and am currently expanded to 655 on the left and 705 on the right. The left side pocket is higher than the right and is not as round as the right, but PS says he will fix that at exchange. I had been doing ok except with still having the drains in until this last fill. There is a lot of uncomfortable pressure and sometimes it feels like everything is pressing on a nerve. I am ok with the size on the right. PS is thinking between 750 to 800 for the gel implants. He also offered to do a tummy tuck at the same time as exchange surgery at a very reduced fee. I am thinking that if I can swing it financially, I will go ahead and do that.
I have an awesome PS now, but the 1st one I talked to had zero bedside manner. He totally did not have the time for me during the consult. He didn't even sit down to talk -- just stood in the room with one foot out the door. I started to ask questions about diep or tram flap and he cut me off saying I was too fat for that kind of surgery. I left his office crying. I talked to my BS and he referred me to my current PS whom I absolutely love. First consult took 2 hours where we discussed what my expectations were vs reality. He never even mentioned my weight as a factor, so I told him what the other PS had said to which he said, true, overweight women do have more problems with flap surgeries, but that would not necessarily make me a bad candidate. He had a greater concern for me due to the length of surgery and the fact that I have a history of afib, an arithmea and chronic respiratory problems. He did not discount my concerns about silicon implants, but showed me the information to prove that they were not the implants my sister had in the 1990's. His assistant showed me before and after photos for similar sized women with both implants and flap surgeries. I talk to him about things I have researched or read on bc.org and he always listens and answers my questions. I have total confidence in him and feel that I will have the best results possible for me in the end.
Currently, I am scheduled for exchange surgery on October 26 along with the tummy tuck. He wanted to get both booked and then if I decide to go ahead with the TT, we won't have to change any dates.
Through this whole process, I have learned to take things a day at a time. To accept help when offered and to be grateful for everyday. To forget the small stuff and revel in the joys of helping my daughter with her homework, teaching the other to sew and simply sitting on the couch with them watching a movie. I know I still have a long road ahead, but feel the worst is over. I will be diligent with getting my follow ups. After all, life is precious. I am grateful that I can come here to a safe place where others who share similar experiences can help me through my experience and where I might be able to offer a little support too.
Wishing everyone well!
Phyllis
Phyllis
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Snicklefrit, thanks for your encouragement. Since I have invasive and in situ lobular carcinoma, both classical and pleomorphic, it is nice to know that there are gals out there with similar diagnosis who are doing well.
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I too have ILC but also IDC, DCIS and LCIS. I had a lumpectomy and finished chemo (TC) in August. I then had a mammogram prior to what was to be a simple surgery to get clean margins. The mammogram showed abnormalities so a MRI was done which also showed something significant going on - either scar tissue or more tumor. So I am having a biopsy tomorrow. I found out today that my insurance company has refused to pay for the MRI but my doctor has responded and argued for coverage. I'll know more tomorrow about that.
Before my surgery they thought I had IDC and DCIS and that it was around 1 cm. As it turned out I had multiple things going on and it was much larger than they had thought - 2.5 cm ILC and 1 CM IDC. Both the original MRI and the biopsy were not conclusive. All of this was in my right breast but my left breast was also biopsied and the spot seen on the MRI was normal. At the time I think I made the right decision but I am now wishing I had had a BMX. My father also had breast cancer but I tested negative for the BRCA gene and have just recently been tested for the check2 gene.
I am so ready to move on. I thought I would have minor surgery and then 6 weeks of radiation and be done by December. Once again I am living in uncertainty and second guessing my decision to have a lumpectomy. I'll know more in 4-5 days.
Has anyone else dealt with this - is it usually scar tissue? That is what I have to believe to get through the next several days of waiting.
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I was diagnosed with left IDC in August and requested a BMX. The surgeon did not want to do a bilateral, recommending just a single. I held my ground as I had a spot I could palpate on the right, had a suspicious area on MRI on the right, although ultrasound guided biopsy was negative. I told the doctor and radiologist that they did not biopsy the correct area but none of them would palpate the spot I felt. I had a BMX Sept. 18, with sentinel node biopsy of left breast IDC showing no spread, but surprise, the right breast was positive for a 1 cm. ILC right at the spot I was able to palpate (just off the margin of where a mammogram could capture it but right at the spot identified on the MRI). Now my surgeon wants to go back in and take all the Level I and II lymph nodes out next week to check for spread. Has anyone else had a similar experience? I would really like to avoid a full ALND due to lymphedema risk, but sentinel node biopsy cannot be done as the breast has already been removed
Does anyone know if there any scans that could be done to identify possible spread to the lymph nodes without taking them all out? Also is anyone familiar with Axillary reverse mapping? Any suggestions would be welcome. Thanks. 0 -
Laural - Damn. I hate when doctor's don't listen to the patient. You do know your own body! I have no experience with this but I think that a PET scan may show positive nodes but it might not be conclusive if you have a Grade I or II slow growing ILC. An MRI could show enlarged nodes but wouldn't tell you if there were small mets in a normal sized node. If the ILC was close to your chest wall with a poor margin and radiation is in the cards, you may want to discuss the risk and benefits of a level I & II AND vs. radiation to the chest wall and axilla with a radiation oncologist. LE is a risk with either but is significantly increased with both. I hope that other's come along with more information and experience. This thread can be sleepy so you may want to start a new thread if you don't get more responses.
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I had a full Level 1 and II axillary lymph node dissection yesterday. Home today from hospital and starting the recovery process again. I will get the pathology reports next week and am hoping for a clean report. The doctor (who has since had surgery on his own hand so his cohort did the surgery) showed up the morning of the surgery to state that he has learned a lesson and should listen to the patient better next time. I guess it's his way of apologizing. I think the surgeons have such little contact with the patients that mistakes like this can happen all too easily.
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Laural - Sending you vibes for a benign report.I hope that you feel better each day!
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Laural and Momof4girls ! Hang in there. It is the worst when you have your mind ready for one set of problems and an entire new set shows up. What you are going through really stinks. I went into my surgery asking for a BMX and like you had ILC on one side and IDC (which no one knew about) on the other side. I think there was a little DCIS thrown in there too. Because my ILC was stage 3 I had chemo and rads and am on Tamoxifen. None of it is easy but it's all doable. My big pieces of advice are drink lots of water, go on walks as soon as you can and cry all you want.
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thanks JFV for the encouragement and good advice. I did get the results from my biopsy back late last week and it was only scar tissue so I am having surgery Tuesday just to get clean margins. No BMX needed! Then I'll only have radiation and Tamoxifan left. I am seeing a light at the end of the tunnel finally.
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If you opt for BMX, what is the follow up over the years to be sure there is no reoccurrence? What tests should be done? And are these ordered by the MO?
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Kimdy, After BMX, chemo and radiation I have had one pet/ct scan, a bone density scan, blood work and a visit with my oncologist every three months. During the three month check I am checked for lumps especially in my neck, armpits and the area that is now my silicone implants. No mammos or sonograms. The MO orders all my tests. Some are because of cancer, some because of age, some are to check for side effects from Tamoxifen. I get a pap smear annually now from my GP. I try to make sure she gets a copy of all the results from the tests my onc has run. GP sometimes adds something not cancer related to my list of tests.
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JFV
I would love to hear your treatment plan. I have been Dx with ILC and also have Ductal components. A skin biopsy also shows up positive. I am ER+, PR+ and HER2+. You are the only one in this group that I see with HER2+. My Onc said I have a complicated Dx and they will treat it agressively. I am very confused at this point. I have started on Herceptin and Tykerb and also medication for the supression of estrogen. A shot every three months and a tablet daily.
I believe I am stage IIIB ang grade 3. I have had some symptoms IBC (this is the reason for the skin biopsy). My breast is not red and swollen at this time. My Onc has not DX me as IBC.
Is there anyone that has a DX similar?
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tBev hang in there ! The begining of treatment is insanely difficult. Actually, I am HER 2-. But ladies I am friendly with are HER2 positive. They took herceptin once they were done with their other chemo. Herceptin is given over a number of months. The nice part is that it's not ver hard on the body. I took dose dense chemo Adrimyacin, Cytoxin and Taxol. I had chemo every two weeks for 4 months. That was followed up with radiation and now I am on Tamoxifen.
I joined a discussion group that included women who started chemo the same month I did. I found that group very helpful. Even though we all had different cancers and different chemos it was great to compare notes on treatment and information we got from doctors. I have remained in touch with some of these ladies. See if you can find a thread for women starting treatment at the same time you did.
I think if your doctor has told you that you have a complicated DX and they will treat it aggressively you can be pretty sure you will get as much chemo as you need. I have no real proof of this but I think ILC reponds to chemo and hormone supression and anything else the doctor throws at you. We live in a time where women are surviving breast cancer. I am sure you will survive too !
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Hello everyone-my story just began this is day 1. i was told i have breast cancer today and am somewhere beyond scared. My tumor is or 9cm. It is ILC from what i am told. I am having my surgery in about a week and a half. i will be having a mri for to check further(i cannot remember what they are checking) .I do know that limph nodes and metastisis make it worse. I am not sure what stage i am. I am having a full breast removal - mysectomy
My tumor grew very fast and did not show up on first mammogram-august and did not show on ultrasound december 20. But tumor showed on both last week. I also had a biopsy done last week the results this week say i have cancer. I am the only person in my family to have breast cancer on both sides of my family as far back as we can track.
It is sad and overwhelming to see how many other woman/men of all ages are dealing with this cancer. When i got on this site i could not believe the number of people effected.
But i am so glad i found this site as all your stories i am reading are helping me to learn more about the cancer and remind me to keep my chin up and think there may a light(no matter how dim) at the end of this long tunnel. Thank-you to you all for sharing it really does help to know you are not alone or the only one dealing with this.
Hopefully i can continue to tell you my story as i become cancer free
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Beth. The beginning is a nightmare. So much information - you are just in overload. It sounds like you have a plan which is great! That is the first step. Hang in there!
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Bev_22, Welcome. I want to say hello and give you a virtual hug from all of us. Her2+ is not that rare among those with an ILC diagnosis. Since my diagnosis many women have come on the boards with Her2+ ILC. momof4kids, sweetbean, and kira1234 all come to mind as recent posters who are Her2+; you may want to PM them. I've read that Tykerb/Herceptin combo is showing great results in trials, so you are getting great treatment. Let us know how we can help. We have been through it and understand.
beth1965, Welcome to you, too. Giant hug going out to you tonight, as I know it's so hard right at first. Since you've read through our stories here you know how ILC tends to be diagnosed late, with larger tumors. It's unfortunately a common situation for us. Even with this, though, ILC does respond well to treatment. There are many here as living proof. I hope you will come here and share with us and let us help if we can. We are a sleepy site among the ILCers some times but we are a caring group. G.
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Beth1965: I was told I had around a 10 cm tumor in total from examination. On the first MRI it was read as a multifocal tumor with a 2cm portion plus a 5 cm portion and other branches. I also had a positive lymph node. Now that I've had neoadjuvant chemo (which means chemo before surgery rather than after), the 5 cm portion seems to be almost gone and everything reduced in size including the node.
In addition to reasserting that the larger tumors are unfortunately such a common situation for us with ILC and that mine did not show on mammos either, I want to point out that there may be further information coming from the MRI if you're having one and ultimately surgery. I also wanted to mention that if you are told that you need chemo, you might want to ask about neoadjuvant chemo which is sometimes done with larger tumors. I am hoping this has been helpful to my surgeon getting good margins. I am having a MX but nonetheless, I think this would be helpful.
Also, there will be further information from your biopsy about the aggressiveness or rate at which your tumor grows. I was told ILC is slow growing. The fact that it did not show up on previous mammos does not mean it grew fast. This concept has been hard for me to understand, but that is what I've been told by several doctors when I was in my first and second opinion. I don't know whether it's the position in the breast or whether it was because of having dense breasts, but it just doesn't show up. My previous mammo 8 months before was rated clearly benign. I found mine myself due to some soreness in the area. It has helped me to know that other women have experienced the same mystifying situation and that they have come through the treatments successfully.
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