Am I being stupid, 2/3 tumours but want breast conservation
Hi all
New here, but it looks like there's an awful lot of experience around, and nice people too.
Over 2 months ago I was diagnosed with ILC 1.2cm on ultrasound. Radiologist looked more closely and found a spot on the other (right) side which is also ILC 1.3cm. Was sent for MRI which showed up yet another suspicious <1cm lesion which I'm waiting on biopsy results for. Both confirmed spots are ER/PR+ and Her neu. In meantime I had sentinel node biopsy and nodes are clear. My docs recommended bilateral mastectomies with immediate reconstruction which I agreed to, until the researcher in me kicked in. There is no breast cancer in my family of many sisters, aunts and cousins. The more I read, the more I think mine is result of complicated hormone history plus 3 years of HRT. So my thoughts now are - I have 2, maybe 3, very small treatable cancers, and even if 3rd one is positive, radiologist said I was caught up in the MRI issue of it finding additional spots in about 20% of people. I am now consulting with docs to ask for wide local excisions (2 or 3 depending on biopsy result). My surgeon says he's not experience in doing 2 WLE's on one side and doesn't know if he will be able to find one who is.
My first consultant said I was 'complicated rather than serious' which I do feel is the case. Other than the possible 'multicentric' thing, all my indicators are good, and I just feel a bilateral mastectomy is just tooooo drastic, but I have been looking round here and seems to be lots of mastectomies for early stage treatable tumours.
I do feel if it is linked to HRT then stopping this (I did about 6 months ago) and taking tamoxifen or AIs would help prevent any recurrence. I don't want to end up with no boobs but am not too concerned if the end up looking a bit oddly shaped - I think I could always go for plastic surgery later if necessary.
I'd love to hear from anyone who's gone either way in any kind of similar situation and the reasons for your choice. I am a researcher but not in cancer, so I'm a bit nervous about going against recommendation of the cancer team. Although I do feel they are following guidelines based on studies some of which inevitably use data from before the more up-to-date techniques and therapies were widespread. I have seen numerous studies saying - bilateral is OK for conservative surgery, and multicentred is OK for conservative surgery (if you've good signs and a good surgeon).
I'm also hoping to have the oncotype dx test done on the tumours, so thought this might give me a bit more peace of mind if the results are low, or may help inform surgeons if more aggressive treatment is necessary.
Looking forward to hearing from anybody.
Thanks
S
Comments
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I did the BMX with TE. Granted my tumor was big, aggressive, grade 3 and HER2+ but once I we found out there was some suspicious stuff in 4 areas of the other breast I went for a double. We didn't even biopsy it. Ended up being a small amount of LCIS. I have no regrets. I finished chemo 3.5 weeks ago and I know I don't want to do this again.
It's a personal choice but I would ask my BS if conservation is possible and why s/he is recommending the BMX over conservation.
BTW I am the history of breast cancer in my family. Absolutely none till me. It seems these days more than 1/2 the women don't have a history.
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You are not being stupid, you are just exploring all your options. Since you did some research you are probably aware that once you are diagnosed with ILC you have increased risk of ILC in other breast as well. I had biopsy on two suspicious lumps that were very close together (12 and 1 o'clock) and my BS told me I could go with lumpectomy because it was in the same quadrant. She said she would order MRI to see if there was something else going on if I decided to go with lumpectomy and if there was another one she suggested mastectomy. I decided to go with mastectomy anyway and did not have MRI. Final report came back with three cancers in my right breast and my left one was precancerous. I had mixture of ILC, IDC, LCIS and DCIS.
After my pathology report came back both of us, me and my BS, were happy I went with double mastectomy. I think once you have two or three cancers the safest would be going with mastectomy as there could be more (some of them being so small that coud not be seen yet on MRI). Good luck with your decision.
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Some women are very attached to their breasts and feel keeping them is worth it at any cost.
Other women fear cancer recurrence more than keeping their breasts, so they opt for the surgery.
Some women do not mind 6 month follow-ups for life...just exams that they go to without stress.
Other women get into hyper-panic each visit for a check-up.
Only you know yourself and only you can decide. Doctors guide us but it is ultimately our life.
Best to you on your decision.
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You have it in 2, possibly 3 areas of your breast, get the BLMX. And most women with BC have no family history, not sure if you knew that. Also, future biopsies create scar tissue making future diagnostics difficult.
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No you are not being stupid. Everyone has their own way of looking at things and we each make our decisions based on that. For one woman, the absolute worst thing might be having to deal with breast cancer again. For another woman, the absolute worst thing might be losing her breasts. No one should be judged for how they react to a diagnosis of breast cancer and no one should assume that they way they see things is how everyone should see it. And no one should ever tell someone else what surgery they should have or what treatments they should have.
I didn't have ILC but I had multi-centric breast cancer. After surgery which didn't result in any clear margins, I would happily have had a re-excision (another lumpectomy) if there was a reasonable chance that clear margins could have been achieved. My surgeon was willing to try. Unfortunately however my MRI showed that my breast was pretty much full of "stuff" and we both guessed that the "stuff" was lots of DCIS. So I realized that we'd never be able to get clear margins with a lumpectomy and I decided to go ahead with the mastectomy. It wasn't what I wanted and it took me a while to get comfortable with that decision, but the MRI was very compelling. So I had a single mastectomy and it turned out that my breast was in fact full of DCIS.
You have two decisions to make. The first is what to do with the breast that has cancer. As lago suggested, talk to your surgeon and find out if he/she thinks that a lumpectomy is feasible. Get one or two other opinions. Find out if any surgeon is even willing to try a lumpectomy, given that you may have 2, and possibly 3 different areas of cancer. If no surgeon is willing to try a lumpectomy, then you have your answer. If someone is willing to try it, then based on everything that you've been told about your diagnosis, you get to decide if you want to attempt the lumpectomy or not, knowing that it might not result in clear margins (which would then lead to a mastectomy anyway).
The second decision is your other breast. Even if you need to have the mastectomy on one side, this doesn't mean that you need to have a bilateral mastectomy. The second mastectomy is entirely preventative and whether you want to do this is your decision. Talk to an oncologist to find out what your risk is to be diagnosed with BC again. Any of us diagnosed with BC is higher risk to be diagnosed again, and I believe that for those with ILC, the risk may be greater (but I don't know this for sure). So talk to your oncologist, understand your risk level, and decide from there. My oncologist told me that my risk to be diagnosed again was about 22%. That's "high risk" and that might have some women running to have a BMX but for me, it meant that there was a 78% chance that I would never have to deal with BC again and that was good enough for me. That's why I decided to have the single mastectomy and not a BMX.
By the way, to my understanding, if your oncotype score is high, that means that there is a greater risk that some cancer cells may have already escaped your breast and for that reason, chemo would be recommended. The purpose of chemo is to go after any rogue cancer cells that may have already moved beyond the breast before surgery. While chemo isn't given just to address local (in the breast) risk, if you get chemo it would help reduce local recurrence risk as well as distant recurrence risk. So a higher oncotype score, indicating a more aggressive cancer, might not necessarily translate to being a reason for a BMX. In any case, it's worth discussing this with your oncologist.
Good luck with your discussions with your doctors. And good luck with your decision. Remember that the only person who has to be comfortable with your decision is you. My advice is only that you try to make an educated decision, knowing all the facts about your diagnosis and your prognosis and what each of the options would mean to you.
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Beesie makes a good point about many surgeons may not even be willing to do a lumpectomy given your situation.
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It's good to explore all your options. But, it's important to realize that imaging tests CANNOT detect all cancer in your breasts. There could be small areas that they cannot see. My post surgical pathology report said I had a 4.5 cm multifocal area of cancer. The MRI showed only a 1.5 cm area. The little bits here and there couldn't be "seen".
Mastectomy really isn't as bad as you may think. At least in the USA, immediate recon. is very common
In Canada, only 5% get immediate recon. You will be happy if you know you did everything possible to get rid of the cancer! The tougher the treatment, the better the outcome - is my opinion.Take Care and Stay STRONG!
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can't comment on the 2 wide excisions but can on the bilateral. When I was initially diagnosed I wanted a bilateral mastectomy. My surgeon told me that there is only a 5% chance of cancer appearing in my other breast. That really gave me pause. I opted to do a uni because I wanted to keep that other breast. It's a decision that I will live with. A lot of people told me that if you are the anxious sort and would be stressing constantly on the good boob then perhaps a bilateral would be the way to go.
I don't think you're stupid at all. If we all had a choice we would all rather not have to lose our breasts at all. I was just thinking with 2 wide excisions there may not be a lot of breast tissue left anyway. Also have you had genetic testing? If you are BRCA positive it may influence your decision to have a uni or a bilateral.
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Can't tell you what to do here,because everyone is different and needs to make their own choices. But I do want to mention something that I didn't realize until after I had my lumpectomy - I had a 2-3 cm lump, and thought that a lumpectomy would remove that much plus a few mm all around to get clear margins. I have large breasts. The actual sample that was removed (with clear margins) according to the path report was 6cmx7cmx3cm - which was huge - I ended up after surgery with a huge part hollow in my breast which i wasn't expecting. In the meantime (3 months later) - the hollow has filled with scar tissue (which makes the shape of the breast normal again, although it feels slightly different). I'm happy with the results and my decision, but I wasn't aware so much tissue would need to be removed to be sure of a clear result.
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I have had two lumpectomies in my left breast (one for a fibroid and ADH 12 years ago and the other for my cancer in December). I have large breasts (always have) and there is NO noticeable difference even after two surgeries...
BUT, I am highly thinking of a PBMX... I have lots of stuff in my left breast, in addition to all the scar tissue, and also birad 3 stuff in my good (right) breast. FOR ME, I cannot spend the next 50 years following it all up and worrying. You are lucky in that you have very small cancers that are treatable. Mine spread microscopically to the lymph node, so I am not inclined to want to wait for my next time to be a higher stage, all to save tissue.
I think if you had a more invasive cancer or a larger tumor, or if you were going through chemo you might realize you don't want to go through that again... This is all a process... even if you find a bs to do the lumpectomy, you may decide later that you need a MX... It is all what you can live and sleep with... I am having a hard time NOT worrying about the future.
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Oh so much to think about. Thank you all so much for your input. I appreciate all the varous angles and agree the decision has to come from me. How do people do this though, faced with making such a decision within the space of a week or so - my situation has given me 2 months to think about it and read up lots. The delay in my case has been partly because I'm in the UK and on the NHS. If I'd gone with early recommendations I'd be out the other end with 2 reconstructed boobs by now, but I did find out enough to ask for the sentinel node biospy and then to insist on having 3rd spot undergo MRI-guided biopsy - only one place in Scotland that has this equipment and expertise. I haven't been able to see an oncologist, however, despite my requests as this doesn't usually happen until after surgery here. Mmm how does that help me make such a big decision. Kind of wish I was back in the American system we had in the Middle East - mammograms every year after 40, I'd have been caught even earlier then.
Still think I'll go with less drastic lumpectomies if possible in the first instance, I'd so hate to wake up with no boobs and then have them saying, well it wasn't so bad really. Radiologist seemed to think it was very feasible to have smaller surgery then look again in a year, especially considering this 3rd spot would never have been picked up awithout MRI and would possibly have been 'treated' unknowingly with radiotherapy and hormone therapy. Optimist that I am!! Or perhaps too freaked about the option of 8-10 hour surgery.
Thanks again, and any other thoughts will be very much appreciated. Especially anyone who's had two WLE's on one breast.
S
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You sound like you are anything but stupid. Quite well informed I would say and I applaud you for carefully evaluating options. Your situation sounds unique..."complex" as your doctor put it.
I am one of the gals who chose a lumpectomy originally. My doctors were split, one said I should have bilateral mastectomies, the other said lumpectomy was fine. I wanted to keep my breasts and felt totally comfortable with my decision. 4 years later though, I had a local recurrence in the exact spot of my original tumor (even though I had chemo and radiation). At that point, mastectomy was necessary along with 6 months of add'l chemo. I also opted at that point to have the other breast removed, just to be safe. 18 months later, I had a massive, stage 4 recurrence (liver, lung and bone mets). I was totally shocked and devastated.
I wonder now if having the more conservative surgery from the beginning would have made a difference. We can never know for sure, but if I had it to do over again, I would choose the bilateral mastectomies from the beginning. I think I was lulled into thinking that early stage cancer is totally curable (which, thank God, it is in most cases), but I do think you need to take it very seriously and hit it with all you can.
I'm guessing that, as a researcher, you are looking at the statistics and thinking there is such a small chance of recurrence why take the drastic step of mastectomies. If you end up being in that small fraction who does get a recurrence like me, you might regret your decision. I certainly do (though, in fairness, I had cancer in 3 nodes when I was first diagnosed). Still, you've got 3 tumors. That seems unusual and enough reason to make you be particularly cautious.
On the other hand, even with bilateral mastectomies, you might end up with a recurrence. I see both sides and totally understand how this is not an easy decision.
Best of luck to you.
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Hello nancy, do you mind if I ask you how your Stage IV recurrence presented? Were you in pain in a particular area and your onc order scans?
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I would be surprised if any surgeon will do a lumpectomy with multi-focal (is that the correct term?) tumors.... but I could be wrong....
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Fearless, I had multi-focal tumors. I'm small breasted and I'd already had a lot of breast tissue removed during an excisional biopsy and yet one of the surgeons I consulted with - the one who had the most expertise and only does breast cancer surgery - was willing to attempt the lumpectomy. We decided to not go that way only because of what was seen on the MRI.
Rather than repeat this same points over and over again, maybe you should let sarana consult with her surgeons, as she is planning to do. If sarana's 3rd area of suspicion turns out to be a false positive (which happens a lot with MRIs), then it might in fact be very possible to do a lumpectomy with her two areas of cancer. And then the decision on whether to do a lumpectomy or mastectomy is hers.
I will say that if I was given the same choice again and if I had MRI results that only showed the two areas of cancer (rather than a breast full of cancer), I would go ahead and attempt the lumpectomy to see if clear margins could be achieved. I say that having already had the experience of a mastectomy with immediate reconstruction. My overall surgery/reconstruction experience was good - virtually no pain and minimal complications - and yet I would still choose lumpectomy over mastectomy if both options were feasible and if a lumpectomy did not leave me with too high a recurrence risk. A mastectomy - even one with good results and great reconstruction - affects you for the rest of your life and opens you up to long-term side effects and future risks (and surgeries). It's not as simple as saying you have all the risks & worries if you have a lumpectomy and you eliminate all of the risks & worries if you have a mastectomy w/ reconstruction. You reduce some of the risks but you create a whole new bunch of potential issues. So I can identify with sarana's position and concerns. She has to weigh the pros and cons of each option for herself and make the decision that is right for her.
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There are many reasons to choose a mastectomy over a lumpectomy and I would never question another woman's decision. But as for me, I am trying very hard to have a lumpectomy. I was diagnosed last August (after two years of hrt) with a large ILC tumor that took me out of range for a lumpectomy. An MRI done shortly thereafter showed another mass, although much smaller, nearby. When my breast surgeon delivered the news that I would need a mastectomy I was shell-shocked. Seeing my reaction, she told me that if I was "highly motivated" to save my breast there was an option -- neoadjuvant anastrozole -- that could possibly shrink my cancer enough to avoid a mastectomy. She (and my oncologists as well) gave me low odds (about 20%) that the total dimensions of the tumor area would shrink enough to change my surgical options, but I still wanted to try.
Fast forward to the present -- I have now had nearly six months of neoadjuvant anastrozole and according to the ultrasounds I have had done the tumor area has shrunk considerably. I am having an MRI the week after next, which should give a clearer picture of what is going on.
I don't know how many well-meaning friends have told me that I am nuts and that I am foolishly choosing my breast over my life. But I want, if possible, my breast and my life, and I see that as an entirely rational approach, with which my doctors concur. I don't know if that will work out in the end (although I am encouraged by the results so far). If it turns out that I need the mastectomy after all I will do it and move on, knowing that I at least gave it a shot.
So, Sarana, if you decide you want a lumpectomy and your doctors agree that it is feasible and wise, I say go for it. And good luck.
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I had multi small calcifications and two areas of tumor. I decided on MX because I would not have to have the rads. Also my BS was concerned that we would have to evaluate each area and over time, he felt that new growths might present.
I have felt more peace of mind knowing all the tumors are gone and that I could move on to chemo then reconstruction. Good luck in your decision. I know I stressed over mine.
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Sarana..I had a bilat....both surgeons I interviewed suggested/recommended that I consider bilat....the cancer side had 3 areas of tumors, too far apart for anything but mastectomy....also I had lymph node involvement that was picked up on MRI.....as it turns out the prophy side was ALH (or was it ADH) and I would have gone downt he cancer road again.....not something I would have wanted to do.....I don't regret having the bilat, but I do miss my breasts sensually....my recon is okay.....in clothes I look okay, naked in the mirror, well thats a different story...
I don't think you are being stupid....you are exploring all your options and what is best for you!!
All the best to you....Karen
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Letlet - my stage 4 recurrence presented with back pain in the middle/upper part of my back, near the spine on the right side. The pain persisted for months before it even occurred to anyone to scan me.
Sarana - My reason for commenting on the thread was to be the voice of a real person who chose lumpectomy over mastectomy and many years later ended up with a recurrence. I guess I'm trying to appeal to your analytical side and giving you another "data point". It is possible that my surgery decision made a difference (though obviously I might have ended up with a recurrence even if I had chosen mastectomy, there are no guarantees).
Whatever you decide, you will have loads of support on the boards.
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absolutely do look in to all options - i too would recommend that you discuss your concerns and your thoughts with your surgeon - also talk to your surgeon about ILC's reputation for being difficult to image accurately
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Sarana - I had Grade 3 pleomorphic ILC in the left breast dx in October 09 - lumpectomy followed by chemo and rads. Node negative but had chemo due to HER2. Fast forward to October 10 - mammo/us showed a spot in my right breast. It was missed on the mammo the year before - you can actually see it on the old films but they didn't pick it up. MRI showed 3 spots in that breast. They managed to biopsy one of them and it was cancer - IDC this time. Node negative again. My surgeon and onc both recommended BMX. I refused. My surgeon agreed to a lumpectomy but wanted to remove all 3 spots to be safe. I thought she would do one big cut to get all 3 spots, but when I woke up she had done 2 lumpectomies. The other 2 spots turned out to be ADH so it's good they've been removed. The IDC was only 5.8mm and not as agressive as my first cancer. I have large breasts, so there is no obvious change in shape at all. Doing rads again at the moment.
I am a software engineer and have a very logical way of looking at things. If the second cancer had been a brand new nasty one I would have gone the BMX route as it would have shown the treatment failed me. BUT I want to give the Arimidex and other treatment a chance to work, hence my decision to be conservative. IF (a very big one) I have a new cancer show up down the track, of course I'll get them off - there will be no choice. I'm a big sook also and hate surgery, so that was another reason to not do the BMX.
Where in Soctland are you? We are planning a trip in August/September to visit your fair country. I'm a member of the Wallace clan and can't wait to see the Wallace monument.
Sue
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I've just been watching the British version of the Oscars on TV, and want to do the same - thanking everybody here, I can't believe I've had so many thoughtful responses, and I really do want to thank you all.
Nancyh especially, you are definitely the voice of the real person who may have made a different choice if you'd known then what you know now. How can any real person know enough to make the decision we might regret later. I wish you the best.
Seeing all the responses has led me to agree with Susan Love - this is not one disease, with one lot of symptoms and outcomes but a collective name for so many different forms of something called cancer and this makes it all the more difficult to establish what is the best way to go.
I admit to only researching early stage/bilateral/multicentric/invasive lobular/node negative/ER-PR+/HER-. All factors which on their own aren't too scary, but bilateral and multicentric together (if this turns out to be the case) may be the big deciding factor. But, the radiologist still made me feel I've got a bit of wiggle room - try conservative, and look again in a year. Like Suepen, I think I'll still go the less drastic route (am a big sook too - thought that was a Scottish term!)
But just in case I change my mind, and I'd better decide soon, I'll go post to see what experience is of bilateral Mx with LD flaps, which is what I was recommended. I just have this vision of mutilated front and back - but with nice perky (and matching) boobs to look forward to.
Good luck JSwan - I'd be interested to hear how things go for you. And thanks too Beesie, I do think the conservation option does depend on having a surgeon who is trained in doing this kind of thing and the one I'm seeing has admitted he is not, but does say there may be an option of me seeing another, But at 2 and a half months, I'm concerned its all taking a bit too long and I may lose the advantage of early detection if this takes any longer.
Take care all.
S
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Sarana - Being a sook was not the real reason I opted to be conservative. It was the logical thinking - let the Arimidex have time to work. In your case, only you can decide, but I thought it would help to share my experiences with bilateral cancers and multiple spots in one breast. See if you can find a surgeon who can do 2 lumpectomies. I was even prepared for her to do one, then go back a few weeks later for another but as it turned out she was brilliant doing both at once.
Sue
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SOOK???? help with the word
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"sook"... I never heard the word before either. Found this definition on www.koala.net.
Sook : person or animal who is soft, tame, inoffensive. Hence sooky (adj.)
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I had 2 small tumors in the same breast and was given the option of 2 lumpectomies followed by radiation or a unilateral mastectomy. As I am small breasted - a crumpled B - my surgeon said a lumpectomy would leave me pretty mangled. Luckily, I went with a mx and reconstruction as more cancer was found in the breast. If I had had the lumpectomies, I would have had to go back into surgery the next day for a mx. I decided that my primary goal was to do all I could to remove & stop the cancer. My secondary goal was reconstruction.
Take care!
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The reason we use the word sook over here is because we come from English/Irish/Scot background.
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Hi Suepen
Have had more time to look at your case and seems quite like mine. I'm concerned about going against docs' recommendations, but have gut feeling this is the right way to go. I have big enough boobs hopefully to handle a bit of reduction if necessaryl Think my problem is finding surgeon who will do it. Am really hoping to get female from Glasgow.
I'm in Ayrshire, south west Scotland. Wallace monument is in Stirling, a lovely place. If you want any advice on Scotland for your trip do let my know.
S
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Sarana,
As you can see, experiences are all over the board. Of course you will want to consider the experiences of others, but ultimately, it is YOUR choice.
My thought was, "You can always take more, but you can't put it back" And I'm sure you know that a reconstructed breast is essentially a lump of flesh(implant or autogolous), with no feeling or sensation.
I wish you the best and hope you can find the right surgeon to meet your unique plan for your complete physical and mental recovery.
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Sarana - Yes, you are similar to me except for the bilateral issue. If all 3 of your spots turn out to be cancer, it might be a good idea to have a mastectomy. When I had my recent surgery, we didn't know what those other 2 spots were - not sure what I would have done if they turned out to be cancerous. But, I knew going in they were probably benign as they didn't show on mammo or ultra sound whereas the cancerous one did show on both.
I'll PM you tomorrow with the deatils of where we plan to go in Scotland - thankyou.
Sue
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