need advice on doctor's recommendations??
I have just started using this wonderful forum as I was just diagnosed Jan. 30th of this year. I found a small lump in my left breast which didn't show up on mammogram or ultrasound, couldn't believe it! The biopsy proved to be ILC and was the shock of my life! My margins weren't clear so I had a re-excision which still had a small anterior portion of cancer cells. So now I need a 3rd surgery. the surgeon recommends removing the aeureola complex and the RO recommends 6 weeks of rads. I have been reading the forum and am scared having read that ILC is sneaky and can often not be seen on scans or felt (although I felt mine). So, I am wondering about masectomy instead and no rads. Also the MO said that my onco-dx score is 21, borderline or in the middle, and that chemo wouldn't help me. She also said I be on a hormone blocker for 5+ years. Now I am wondering about all the folks who have had chemo with ILC and why. Maybe it's because I am pr- I didn't think to ask at the team meeting. I wonder if I had a recurrence and already had radiation what would they could do besides surgery. So I guess my real questions are: do I have the lumpectomy and rads or mastectomy like a lot of others. Also the onco thing, many of you had chemo with very similar pathologies. Maybe the pr+ is when chemo works. I was upset when the MO said I am borderline and the chemo has not proved to help in my cancer which I think she said that less than 5% of the ILC people have; or maybe I just don't need it. I am so undecided and confused and exhausted and I haven't even begun therapy yet! hope you all can understand all this. thanks for your help
Comments
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Hi Beachwalker
So sorry you find yourself here... So, a few things. ILC tends not to show up on mammogram-- so one suggestion would be to have an MRI if you have not already--- just good to know what is going on everywhere.... I think the data suggests that more like 20% of people get ILC.
Your oncotype score is something you should get a second opinion about.... the low end of the range for chemo has been a moving target over the past few years, but your score looks to be close to intermediate.... which is what my onc called the gray area where it is hard to decide.....
I know others will be along with suggestions about your third surgery--it sounds like it has been draining. I can tell you that I had ILC in 2008, ended up with a lumpectomy, no nodes, clear margins and an oncotype score of 26 or 27.... gray area. I did have a pre-surgical MRI because I had had a mammogram 6 months prior to my diagnosis and nothing showed up. What I have learned is that mammograms are great for catching certain kinds of breast cancer, so I will always have them, but for ILC, ultrasound or MRI is the best. But of course, we are not having MRI's before we are diagnosed, so how would we know? I now have an MRI annually.
Anyway, I chose chemo-4 rounds. There is some suggestion that chemo may not work as well on ILC or on low grade bc..... but with my oncotype score, I felt that I needed to go forward. I also had radiation and have been on femara for 4 years. It was all unpleasant, but doable.
I think 2 surgeries must have been exhausting--- and the idea of a third I am sure has you down a bit. This is such a personal decision. There were no good medical indicators for me to have a mastectomy, but if there had been, I probably would have done it. I am glad I did not have to decide that. There are some good posts on the DCIS forum by Beesie who lays out the decision making process around these options... she does a great job, it is worth looking at them.
All I can say is that if you go forward with another lumpectomy, I would recommend a second opinion from another MO about chemo with your oncotype score. My onc did not tell me to have chemo, but she did say that "it would be hard not to give you chemo".....
The PR- is somewhat of a challenge in that for the most part, they make their decisions on the ER. I had er+/pr+ from pathology, but then er+/slightly pr- from oncotype.... onc treated for ER+ and said that was the standard (at Dana Farber)..... keep in mind, these things change rapidly, so it could be slightly different-- but you should really ask the hard questions on the oncotype and the chemo--- that oncotype report is 3 pages and shows you very clearly the benefits of chemo for someone in your range.... and then you can make a decision.
I wish you luck. If you have to do chemo, it is doable.... lots to consider. I was young, had young children and very healthy--so I was able to tolerate it reasonably well. You need to think about your own life circumstances and what you will need to feel that you did what you needed to to eradicate this. I should also mention that my onc thought of all the treatment, the hormonal therapy was the most powerful...... the rest, according to her, was just insurance......
keep us posted-- try to get some rest--ask for some ativan for the anxiety if it gets to be too much. You have already been through alot....
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thank you so much. I had the tests after I found my lump and then before meeting with my surgeon for the first time had the MRI. I do need to ask my MO about the chemo not being a treatment and why, at least that's what I thought she said. I will call her next week. Yes, the pr- is troubling when most have pr+. Oh well, hopefully things are always being discovered and improved upon.
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Hi Beachwalker,
I wondered some of the same things. I'm still fairly new to all of this so I can only tell you my story and what I have decided. What I can say about this is that it will come down to it being your personal decision as it was mine.
I was dx in November with IDC and had my first lumpectomy also in Nov.
Margins weren't clear and then was told it was ILC . Then in December I had my second lumpectomy. After 4 weeks the second incision became infected so I had to wait to start rads. My onco score was 14 so with no question there was no Chemo. I finally started rads on Jan 30th and after 8 weeks have just recently finished them. I am still working on getting my energy back . I have now been on Tamoxifen for 2 weeks and having a lot of sleepless nights at this point but luckily no hot flashes yet and hopefully I won't .
I am going in on Monday .... Yes Aprils Fools Day ....For reconstruction on the other side which will be reduction because of the damage that the rads have done.
The tissue that they take out will be biopsied .... I am very nervous because I had been followed for two years for mamos every 6 months and when they said I was clear for yearly ones it took me two years to get another one and they saw something VERY small but when they took it out it wasn't so small !!!
I still believe that I made the decision that was best for me but will always be wondering if it will be back.
I wish the best for you and I'm sure that any decision that you make will be best for you
:-) -
Hi beachwalker. I had a bmx and did chemo and radiation. I had positive lymphnodes which decided the chemo question for me. I believe I was told if my nodes were negative than I would not have had to do chemo. Radiation helps prevent a local reccurrence and chemo helps prevent a metastatic reccurrence. Wishing you the best.
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Beachwalker54 - I'm sorry that you need a third surgery. It must be mentally exhausting going back for a 3rd time. Can he explain how he will determine the margins he takes this time?
The oncotype is just one of the factors that my MO considered when coming up with my treatmrnt plan. This is a big decision and I would encourage you to get a 2nd opinion. What's most important is that you're comfortable and at peace with your plan.
Wishing you an uneventful recovery and clear margins on your next surgery.
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Beachwalker, welcome. You have some difficult decisions to make. The other ladies have given good advice already.
Regarding chemo, I did have it as I had isolated tumour cells in two lymph nodes. I did not have the oncotype test and the two doctors I consulted could not say whether I definitely needed it. I chose it anyway to be on the safe side even though I wished I didn't have to.
Even when one chooses chemo, there are then decisions to make about what type.
I have read that chemo works better on high grade tumours rather than low grade.
In your position I would get another opinion on chemo. You can also consult Cancermath, which is an online tool for predicting the efficacy of treatments, but it is not personalised like oncotype. Google it. -
BW
there is a thread somewhere on this board called "mixed-type breast cancer" and there are plenty of people there who were ER+PR-.... lots of good info there.....
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I had chemo because I had lymph nodes involved and a large tumor. All together stage 3, rather than stage 1 like yours.
I would strongly second the MRI, especially if they are going to operate a third time (you poor thing, that is quite crazy). Did they check your sentinel node?
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If they are going to take your areola área then you will be left fairly mis- shapen so it may be worthnconsidering añ mx......
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Hi Beachwalker,
I did lumpectomy and am currently doing rads, recommedation is 5-10 yrs of Tamoxifen. Hard hard decision to make to not do the MX or BMX. The deciding factor for me was the BRCA testing. Did you do that? If not you might want to inquire about it. As far as chemo, my MO did not do the oncotest and said it would only help 0-1% and the risks outweighted the benefits for me at my age. I did have 2 isolated tumor cells but clean nodes, so I was really unsure if this was the way to go. The women here have taught me alot but over everything else to be at peace with the decisions and not to look back. I am learning... I do think they also need to tell you what the breast is going to look like after this surgery so that can help with your decision. You are the one that will see it everyday, I have a couple scars, and a indent I can live with these and they do not bother me. Now if it ever dares to show its ugly self again, they both go. Good luck with your upcoming surgery, I am sorry you have to have another one.
Take care.
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Large tumor and large lymph node at diagnosis, so no Oncotype for me and directly to chemo (do not pass go, do not collect $100). ILC often does not get detected until it is large and/or in the nodes. Since you seem to have caught yours prior to that, that is wonderful news. I don't know what I would have done if I had to make any decisions about my treatment other than where to have it. I had some reduction in tumor size, but not a pathological complete response to chemo. Most with ILC are unlikely to have it. Honestly as said above, many oncs say getting on the hormonal therapy like Tamoxifen or Femara is the most potent tool in their arsenal, so if you don't have chemo, you'll be on that more quickly. For whatever reason, they do not start those drugs until all treatment is complete, meaning for me, it was an 8-month or so wait.
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Hi Mary625,
I am glad that you mentioned how long you had to wait for therapy. I was biopsied on Jan.30th, had another re-excsion and still need another for anterior clean margin. I'm also waiting for the braca results so I haven't had any therapy yet. The docs said it's no problem waiting all this time so I hope they are right!!
Marlene (beachwalker54)
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Hi lemom68,
I had a whole thing written and lost it, I think, still learning how to use this forum: Thanks Nancy for helping me with it! I have a ways to go as I'm not that good on the computer.
Also, thank you eveyone for your warm welcome. I am subbing now and have a free period and just noticed all the posts for me. Thank you all!
I also can live with an indent and scar across, which is what my surgeon said I would have. However, my left breast is already smaller from the 2 surgeries and then a 3rd and rads!! I wonder if I will see it at all? I think I would rather still have some of my own breast rather than none at all at this point. I realize that the rads will be a real pain to go to everyday. Like you, if in the future it is back they are both gone!
(beachwalker54)
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Beachwalker---1/30/13 was also the day I was diagnosed. I too, have a dirty margin after bilateral mastectomy and recon that has to be re-excised this week. I'm so sorry you find yourself a part of this club, but I have found that there is tremendous support and knowledge here on this site.
This week I'm haivng a little pity party for myself because there were to have been TWO Oncotypes sent out for me (left and right), but someone screwed up and only the left was sent out. Genomic Health Labs has now informed me that they have now received the right breast tissue specimen, but it arrived 3 weeks after my surgery, and was a specimen taken from a biopsy on 1/25/13 (the left specimen was taken on the day of surgery as expected and arrived 4 days after surgery). I can't prove it, but this smells like someone lost my right breast surgical specimen designated for Oncotype, and then scrambled to send what they had on hand when my BS started making phone calls trying to track down the results after she received only the left Oncotype score. The left side was a score of 15.
So now I am waiting for the right side score. This of couse has delayed my getting to see the Onc as she will need all the results on which to base my treatment plan. Sometimes I think this nightmare will never end.
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Beachwalker,
I just got done (yesterday )with my reconstruction on the side that wasn't effected by radiation . I had the same thoughts as you as to be able to keep what I could of my own breast . I am now officially an A cup on both sides and not bothering me one bit!! On the bright side of it I won't be spilling out of my bathing suit top:-)
On the bad side of it is waiting for the pathology report to come back..... If they find any of that sneaky stuff the rads will make me lopsided again and then I don't think I will have much more options...... So right now just hoping that it comes back negative!!!
And yes the rads were a pain to go for 8 straight weeks but even with the redness and soreness it was doable.... I don't work so it made it a easier and my appt times were at 8:30 am . My energy levels fell pretty quick towards the ends and I'm still trying to get it back.... I should of waited for the reduction but I am one that just wants to get back to my new normal as soon as possible. -
Hi all,
I just got off the phone (home with a cold) with my insurance and was told I was denied the onco test, although I already got the results!! Go figure! I was questioning where the BRACA results were (been 4 weeks) and they mixed up the onco for it and they were wrong about that anyway. Everything is resolved since I just called the lab in Cal. myself about the onco test to make sure it was in fact paid for, which it was, (after almost having a heart attack)!
Also my surgeon called and said we should just go ahead with surgery for the 3rd time and rads since she feels I have only a 2% cnance of a mutation (braca being +). She confirmned that this is the way to go and I said that i will have a size A boob left if I'm lucky. She said that the other one could be reduced to match after about 9 months after everything is over and we see how my breast has settled. So, I still wonder, why not just have a mx and no rads and never need a mamogram or MRI again. I guess I still really want some of my own breast. This must be me thinking out loud. I guess we are on the same page about this (1American). Did you have an oncodx type taken? Mine was a score of 21, low borderline, not acceptable for chemo. So surgery will be in 2 weeks.
The pic of the tulips took my breath away! I have a friend in Holland who always tells me to visit. I think I should go around tulip time. It is a wonderful event to look forward to, especially since I haven't ever really traveled anywhere except to Israel in 1980.
I'm off to the lyme disease support group tonight with my 31 year-old daughter who has chronic lyme. That can be another awful disease to cope with. She started with severe headaches at age 13 and then all kinds of other symptoms presented themselves. Drs. were cluless. Finally 5 years ago it occurred to me that she might have lyme disease and her dr. tested her. It came back positive, so we finally had an answer. That is a whole other story.
They say that G-d doesn't give you more than you can handle but I really wish he didn't have so much faith in me!
Have a good night everyone.
Marlene (beachwalker54)
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Lyme sucks, Marlene. Sure hope she has no co-infections.
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Hi Galsal,
My daughter does in fact have co-infections. She is being treated for bartonella and lyme. What a mess! The govt. won't admit to lyme and many think insurance companies would go broke if chronic lyme was exposed as it really is; a disease needing validity and much reasearch. Chronic fatique, fibromyalgia, M.S., and many other problems are probably lyme related or really lyme disease.
Anyway, I am wondering about your treatment. I see that you had a double masectomy and your pathology almost matches mine. ( I am PR- however.) My doctor is recommending a 3rd re-excision to get clear margin (a little left) and then radiation. Did you decide to do that radical treatment or did your dr. recommend it? I also am wondering why you changed meds. 3 times in 1 year? I am rather scared of how I will reaact to the drugs and the radiation.
Marlene
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HI 1American,
I forgot to thank you for your reply to me. I will probably be an Acup or less when all is done. I missed the call to scedule my 3rd re-excision yesterday and will find out today when they want me in. Still hoping this is they right way to go. so many women seem to have bmx with ILC. I can understand about waiting for pathology reports. thanks.
Marlene
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Marlene -- I am an ILCer and, after a year of neoadjuvant hormone therapy, had a lumpectomy and re-excision. No regrets.
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Thanks JSwan.
My surgery is next tuesday and i will finally have my 3rd re-excision, (hopefully my last). still going with my gut feeling (and the dr.) `to save my breast even though it is now more like an A size. just hope i'm not asking for trouble with this ILC coming back to haunt me. if so, they both go. just hope they see it if it returns, i suppose on mri it would show up.
marlene
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Beachwalker-
I am glad you have come to a decision, I know its not easy. Let us know how your surgery goes on Tuesday, sending love and prayer.
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Marlene -- I am now an A- at best but don't mind. I have yearly MRIs along with the mammograms. Best of luck with your surgery next week.
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Hi JSwan and Lemon68,
I haven't been on the site for awhile, needed some reflection time on my own and was becoming overwhelmed I guess. Am leaving for Boston today and surgery is tomorrow. thank you for posting your decisions and your good wishes. I am not so concerned about the 3rd surgery. Just still hoping I am doing the right thing and like many of you I will have no regrets. Also my braca (finally) came back negative and my onco is 21 and MO said no chemo. I have not gotten a sceond opinion on that. Onward I go, finally moving along.
Will let you know how it all goes. Am also going to mention to my surgeon that I THINK I feel a thickened area in my "good" breast and did have a mamo and ultrasound last week on that one. All is said to "look" fine. Hopefully the surgeon will know or lead me in the right direction for this. Never dull moment!!
Have a good week everyone.
Marlene
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Hope all went well for you today with the 3rd incision. I had taken time off the board because of another infection and complications of the antibiotics and a trip to the ER on Sunday. But from the trip to ER they had did a ultrasound on both sides and found a small spot on the ILC side..... Dr asked were they sure they had gotten it all?. So at my appt. on Monday with Rad Oncologist he says ...... I see what they are seeing and we can do a biopsy.... At this time my response was NOOOOOO. I have had enough right now and could we just keep an eye on it right now ..... He wants to do a cat scan in a couple of months since that is how he has been following me. And I have a mammogram at the end of may...... I just can't take anymore at the moment... I'm planning a road trip in June and want to be over the infections and feeling good!!!
My onco type was 14 so no question of chemo.... Thank goodness :-)
And yep your right about ....Never a dull moment!!! -
Marlene- Your in my thoughts, I hope things went well for you today. Good news on the BRCA testing too! When you are up to it please let us know how you are doing.
xo
1american- I am sorry to hear they see a spot, I understand your choice just dont wait too long to get it checked. This ILC is so sneaky but slow growing so we do have that on our side. I am with you I told MO I need 30 days of nothing, to be left alone so I can heal and find myself again, we know our bodies both physically and mentally. It is for me also a time to heal. No chemo, thats good news! Hang in there.
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Hi everyone,
I haven't been on for awhile but want to fill you in on my current medical status and as usual I have so many unanswered questions. I had my 3rd re-excision and thank goodness it had no residual cancer, aerelo and nipple are gone. Looking at my newly shaped breast is taking getting used to that's for sure. It's so different looking and is a constant reminder of the disease. I actually try not to look too at too much. Am still in a little disbelief about this whole cancer thing. Perhaps reconstruction will be in the future but I really can't think about that now. Mapping for rads is schelduled for 5/14 and then I'll find out my schedule. It will be 3 weeks plus a week of boosts, I think. There was discrepancy about this because the team RO in boston thought 6 weeks and the RO in Falmouth said maybe 3 weeks or the Canadian or European radiation method, (whatever that is). Then I went to see the RO in Falmouth again ,( who is wonderful), and he showed me the report of my 3rd surgery and the recommendation from the Boston RO, it now says the 3 week course. After speaking to the doc from Boston he definitely agreed, so I got that settled!
In the meantime I thought I felt a thickening in my good breast and got nervous and went straight to my gyn who sent me for a mamo and ultrasound. (I did have an MRI in Feb in Boston). Both showed nothing and my BS in Boston said she spoke to the doc who did the tests and said it was "normal "tissue. I have "fibroglandular densities and no change from previous exams. No new mass lesions or clustered microcalcifications are present."" This being said, I am still worried because I have read so much about ILC, that it often doesn't show up on scans, as mine didn't but I felt it. Also many women seem to have had BX when treated the first time (and they often find cancer in the good breast too) and my doc really wanted breast conservation, which I WAS comfortable with. Now that I feel the thickening in the good breast I am second guessing my treatment (a little late now). What a pickle! On top of all this I read where some women get chemo when they have better pathology than I do, like grade 1. Maybe they had a higher oncodx score but I don't think so. I have to be in the gray area having a #21
which they say chemo doesn't help. I am trying to believe that the docs at MGH really know what they are doing but I feel unsettled and worried still. Any suggestions to help put my mind more at ease would be a great help! I know i wrote a lot, pls forgive my rambling. Peace and contentment (P&C) to you all. How about a long cruise!! lol.beachwalker54 (Marlene)
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Marlene -- First of all, congratulations on your successful re-excision. It's a great feeling to know you are done. Congratulations too on getting the three week radiation protocol. Even though I really didn't mind radiation and had no problems with it, three weeks sounds better than six.
As I mentioned before, I had a lumpectomy and re-excision and have no regrets. My lumpectomied breast is smaller than the other one and, let's face it, doesn't look like it used to. But when I am wearing a bra no one would know and I really don't think about it that much anymore. For me it was the right decision and one that my doctors supported.
Like you, I also didn't do chemo, although my doctors were divided on the issue because of my tumor size and positive node. In the end I went with the advice of one of my doctors who told me that the odds I would benefit from chemo were low and not worth the risks. I know it was the right call for me and my circumstances.
Last week I had a mammogram and ultrasound to check out a thickening in my good breast. Both came back normal. So I understand what you mean about the monitoring issues and the fact that ILC doesn't always show up on the imaging. But I and my doctors keep a close eye on things and I have yearly MRIs. Plus, I know that having a BMX would not have guaranteed that the cancer wouldn't come back or elude detection either.
I really think that the breast cancer experience is all about making the best of a bad situation. It sounds to me like you have done that and I think you will grow more comfortable with your choices as time goes on.
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Happy to hear that your done with the 3rd incision . I know what you mean about the unanswered questions I still have many.
I had to have the 2nd incision but was able to keep my nipple and areola and then had the reduction on the other side a month ago. Each side now looks very different due to where the incisions were but they are similar in size .... A cup
Wow three weeks of Rads sounds good. I had to have six weeks with five boost on top of that. I had become extremely fatigued and a bit red but no blisters.
After the reduction I went into another infection and ended up at the ER and while there they had taken an ultrasound and then asked.... Are they sure they had gotten all the cancer out.... WHAT???
I had a follow up appt the next day with the rad oncologist and asked him to look at the report.... He said that he saw what they are talking about and I could have a biopsy... WHAT???? I actually laughed and said you've got to be kidding!!!! And then said NO I'm not ready for that and can we just watch it for now.... He agreed ...
Now today I went and saw the med oncologist and he wanted another ultrasound in a month to compare... I told him my 6 month mamo is scheduled for at the end of this month so he said let's get that first.... Thank goodness because this illness is in no way cheep!!! Way to many tests!!
I also have had a hardened lump on my neck for 4 years and when it was tested it showed something or another and I was always was told they couldn't rule out cancer but if I choose to have it taken out that I could possibly have nerve damage from it..... That alone kept me from doing that.... Well today the med oncologist said that its unlikely that would happen and I should have it tested for lymphoma or leukemia with either a needle biopsy or to have it taken out and test.... both along with a special test that they perform to determine weather it is either one . I of course have chosen the needle because I really DO NOT want to go through another infection with an incision .
I think we all need a break at some point of all the treatments .... A cruise sounds great but my husband thinks I will push him over board !!! Lol
I chose a road trip for two weeks with a five and six year old!!!! :-)
Oh and the tamoxifen .... I have been on that for almost 2months with hardly no sleep!!! He took me off of it for a month to see if that is the problem and if so he will give me something else ... He said the name but I just can't remember everything these days!! -
1american,
I will be watching to see the results of the neck lump biopsy. Not that I would wish lymphoma/leukemia on anyone, but I wouldn't mind having a dual pathology buddy to commiserate with.
So far my CLL/SLL is classed as indolent, although at my visit with the MO last week his comment was no longer "if, but when". Sigh.
Gail
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