Time for another biopsy :(
Comments
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Thanks, ballet. Good things to think about. I met with my surgeon yesterday and the pathology report said I have ADH and they "cannot rule out DCIS". That troubled my surgeon because he said he's never seen "cannot rule out DCIS" on a report. He said they usually just say ADH, and that's it. He is sending me to a breast surgeon, who I meet next week. She will do the excisional biopsy. I asked my surgeon if it comes back just ADH, should a mastectomy still be considered? He said it wouldn't be considered normally, but because of my history of DCIS, that's a great question for the BS. I have an incredible peace right now about the whole thing, although a lot of thought are going through my head regarding where I go from here whether the diagnosis is just ADH or DCIS. A friend, who had breast cancer, now sees a naturopathic doctor and wants me to check him out. I honestly don't know if I could totally change my eating habits though. I am 5'8 and weigh 140 lbs, so I'm not overweight, but I definitely don't eat the healthiest. I love sugar and eat too many processed foods. Anyone else change the way they eat after a cancer diagnosis? I wonder if it will really prevent anything. -
Hi JMB, I'm so glad that you feel more at peace right now. With regard to the "cannot rule out DCIS" you might be dealing with that situation I alluded to, where they have trouble distinguishing between the ADH and the DCIS (especially with low grade). In my situation, no fewer than six pathologists reviewed the stereotactic core biopsy pathology, to be sure that it was ADH and not DCIS, and then when I had the excisional biopsy; again, they had several pathologists review the slides to confirm that what they saw this time around was DCIS. Both sets of slides were also re-read by Memorial Sloan Kettering, where I subsequently went for the last two of the three lumpectomies (and they concurred with both the core biopsy and excisional biopsy results). So, after you get the excisional biopsy, if it comes back ADH, I would definitely recommend that you get a second opinion "read" on the pathology. I also did that on my previous ADH/ALH diagnosis. Just food for thought.
Now, about whether to do mx for ADH, just wait until you get to that place. See how you feel. If, as Beesie said, the ADH was there all along, you aren't really in any different place than you were after the lumpectomy for the DCIS. If you feel that you will just have incredible anxiety and fear going forward, as well as stress around frequent monitoring and the potential for more biopsies, you might want to consider the mx. As an alternative, you could consider taking the Tamoxifen. For all you know, you've had the ADH for years, and finally some of it progressed, through genetic changes, to DCIS a few years ago. It's likely that I've still got ADH in my breast. They didn't go for clean margins with the ADH, it was adjacent to the DCIS and forgotten about.
About the dietary changes, I've been trying to do that for a number of years (pre diagnosis). I lost a lot of weight about 6 years ago. I think keeping weight in a normal range, avoiding sugar as much as possible, and exercise, exercise, exercise is the way to go. If you can do more than that (i.e. consultation with naturopath, etc.) go for it. -
I will definitely consider a second opinion on the pathology, especially after reading about how difficult it can be to distinguish between ADH and low grade DCIS. When I asked my surgeon, he said he didn't think I need to since the pathologists are at the Cleveland Clinic main campus and are very good. Two read my stereotactic pathology. I will just wait and see what the results are from the excisional biopsy and go from there.
I also asked my surgeon if the ADH could have been there 4 years ago from my DCIS diagnosis and he said no. Ballet or Beesie, can you explain why you think it could be when my surgeon says it can't? Wouldn't it have been removed during the lumpectomy if there were clear margins? ADH was never mentioned in any pathology 4 years ago.
I am feeling overwhelmed with all the internet reading I've been doing today. Everyone has a different opinion and I'm starting to feel like it's all a big crapshoot. It's pretty discouraging when you're in the midst of it. -
Well, I'm not going to go against the views of a surgeon (is he also affiliated with Cleveland Clinic?) I have to say that for my excisional biopsy and the subsequent re-excisions, the pathology reports did not include mention of any benign or pre-cancerous findings. I was told that when they get the cancer pathology finding, they don't necessarily bother with those other findings. I realize that Beesie's path report did provide all of that stuff. So, if the Cleveland Clinic didn't list pre-cancerous findings on your lumpectomy surgery four years ago, it could be because none were there, or because they just don't bother listing those kinds of findings in the presence of cancer pathology. Would a lumpectomy get it out? That depends. They are not trying to get clean margins with ADH, only with DCIS. If it was there, they weren't really trying to get "rid" of it. About whether it could have been there four years ago, I defer to your surgeon, but I just don't see why not. These things develop over a long period of time. I had ADH 18 years ago, and then the DCIS 1 year ago. It had to start from something. Maybe you want to PM Beesie to see what she thinks. As for your current decision-making, it doesn't matter if it was there before or appeared more recently. The follow-up is the same: the excisional biopsy to see if there's anything lirking near it, and then careful surveillance if not. Apparently, most people are on this 6 month mammo, 6 month MRI rotating schedule, and some are on Tamox. I never did that, but that's the current model. -
Yes, my general surgeon is also with the Cleveland Clinic. I declined the Tamox. and my oncologist was fine with it. I just couldn't do it. -
"Everyone has a different opinion and I'm starting to feel like it's all a big crapshoot."
True.
Unfortunately, all of life is a big crapshoot.
ADH is really not something to fear. You've already dealt with DCIS and you've already taken on risks by not taking the Tamox (and yeah, I'm doing the same thing--just couldn't do it--as you said). Just make sure you don't have DCIS again--do the second opinion on the pathology report if it comes back as ADH. If it's DCIS, you'll deal with it, as painful as that might be. -
jmb, I don't have much to add to what ballet has said. Your surgeon is the expert so he probably knows something about DCIS or ADH that I don't know (all those years of medical training and treating patients would buy him a lot more knowledge than I'll ever have) but I am surprised that he would definitely say that this ADH wasn't there 4 years ago - I don't know how he could know this for sure. Could there have been a small area of ADH just beyond the margins of the last surgery? I don't see why not. As ballet said, when you have a lumpectomy, they are only going for clear margins on the cancer, not on any of the other conditions that you might have.
It would be interesting to know why your surgeon feels so certain about this. -
Beesie, Maybe he doesn't want me to think he missed something, even though I wouldn't think that or be upset. He seemed confident and was very quick to say no when I asked the question. He is sending me to a breast surgeon though, so I would say he's feeling I'm a bit out of his area of expertise at this point. I will ask the breast surgeon the same question and see what her response is. She is more of an expert, and she may have a different opinion. It is interesting that when I asked him if the excisional biopsy comes back that it is only ADH and no DCIS, should a mastectomy still be considered. He said that is a great question for the breast surgeon and he didn't really know the statistics on that, or if there has even been much research done. Certainly there are lots of women out there who have had DCIS recurrence or DCIS with ADH showing up a few years later. I'd love to talk to them. -
My thought on hyperplasia, especially those of us with lobular, is that they could probably stick a needle randomly in either of our breasts and have a good chance of coming back with some. I am not sure there is ever any way to know how many of us have it or how much of it there is unless they've done full pathology after a mastectomy. The only reason they even have a guess as to what the percentage of women with ALH/LCIS is is because of the incidence found on autopsies, many on women who did not have breast cancer. -
Beesie, what are your thoughts on MRI for DCIS or ADH? My surgeon, who did the stereotactic biopsy, said not to be surprised if the breast surgeon wants to do an MRI. I've never had one, but have read they aren't great in diagnosing DCIS and can have false positives results. -
jmb, I'm a big believer in MRIs. My MRI really helped with my diagnosis, because it uncovered a much larger area of DCIS than what was seen by my mammogram imaging.
It used to be believed that MRIs weren't good at spotting DCIS, but this was disproven quite a few years ago. The studies that I've seen indicate that MRIs are in fact better than mammograms at 'seeing' DCIS, and particularly, high grade DCIS. What MRIs aren't good at are spotting benign calcifications - and that's why I'm not sure how effective an MRI would be with ADH. -
I did change my diet after my DCIS was excised. Since I decided not to do rads and tamoxifen I decided I had to do something. I found a dietician that worked with a cancer clinic. 2 things he insists on eliminating are sugar and dairy. He is reasonable though and doesn't expect you to change years of eating habits over night. I would say that I am on a 90% plant based diet right now. I will have organic chicken or wild caught fish a couple times a month. He also put me on 4 supplements. One of them is Indoplex DIM - that is an estrogen balancer in place of the Tamoxifen. I have to say that I feel more energized and have been sleeping better. I really don't deny myself anything that I am really craving, I just have much smaller portions of it - but my cravings are really diminishing. I have no way of knowing if it is working to prevent a recurrence, but I feel like I am being proactive. -
jmb5, I also had an MRI recently, as prep for my excisional biopsy, due to ALH found in my stereotactic biopsy. I was worried about the reports of false positives in MRIs also. Then again, my breasts are extremely dense, and I was worried that without an MRI, they might miss something.
I'm glad we did the MRI. They did find a second very small mass, same breast, that cannot be seen by mammography. A subsequent ultrasound only rated the little mass BIRADS 3 (scan again in 6 months.) But my surgeon has offered to do an ultrasound guided core needle biopsy of the new spot, while I'm still under the anesthesia for the excisional biopsy of the first area. So now I'll get pathology results for both areas.
Like you, I have deductible issues. My $5000 deductible has been met for this year, so checking out the new tiny mass by CNB now means my insurance will cover it 100%. If we wait another 6 months, and the new little mass looks more worrisome, I may need another core needle biopsy (goodbye another $5000.) I decided this was my best bet to move into 2014 with something close to a clean slate.
So for me, the MRI may have allowed me to take care of another issue now, that might have become a more worrisome issue next year. I'd love to have zero biopsies next year.
I know these are all hard decisions, and I totally understand the crapshoot comparison. -
Cactus, I hope you all your results are benign, and that you can get through next year with no additional healthcare costs. It's such a bummer, but when I start to get negative about it, I remind myself that it can always be worse. Since I have also met my deductible, I'm hoping the breast surgeon will do the MRI. I've thought about spots that could be there that mammograms have missed. Sometimes I think mastectomy would be nice to not have to continue going through this, but then the thought of mastectomy makes me extremely sad. I'm sure the consult with the breast surgeon on Wednesday and the biopsy results will help me know what to do. -
Well, my consult with the breast surgeon at the Cleveland Clinic wasn't the greatest today. The first thing they did was show me my mammogram images and inform me that there was not one area of calcs, but THREE! The general surgeon biopsied one spot a couple weeks ago and found ADH, but there were two more spots. When the original radiologist looked at the pictures, he found a cluster of calcs and a linear spot, which he said was vascular, caused by the radiation 4 years ago. The radiologist in Cleveland, who looked at the pictures today, said it definitely isn't vascular, and also pointed out the third area, which was 3x3 cm! I was floored! How on earth was that spot never mentioned before? It was also linear, and very obvious when the BS pointed it out. She said that she cannot do an excisional biopsy on all three areas, that it would disfigure me, so the plan is to biopsy (stereotactic) the 3 cm. area and try to get a definitive diagnosis. She said she thinks it's DCIS again, and the radiologist wants a better picture of a certain area when they do the mammogram after the next biopsy. There is a suspicious spot that might be invasive. One thing the surgeon mentioned was that none of this was there on the mammogram a year ago, which I guess makes it concerning. Any thought on all of this? Thoughts on how the radiologists have such differing opinions, and one missed some areas? The only thing I can think of is that the main campus at Cleveland Clinic has better technology? (My original mam was at a local Cleveland Clinic branch.) -
Wow, jmb. That's quite a lot you were hit with today. I do believe that the technology can make a difference. I am now treated at Memorial Sloan Kettering, after having initially been treated at another teaching hospital (which did pick up the DCIS). I've got very dense breasts, and when I saw the mammos at MSK, I was amazed at the difference in quality. Everything looked like "snow" or polar bear in the snow in the other mammos. These just show right through the breast.
Sorry you are having to face so much, and it's getting a bit scarier, with the thought of an invasive component. I'm sure that the ADH seems like nothing now! -
Thanks, Ballet. I don't have my next stereotactic biopsy until Nov. 25, so the waiting stinks. The PA did tell me she will do everything she can to make sure I have results before Thanksgiving, so I don't have to wait an extra 5 days. As we all know, the waiting is often the hardest part. I was fine yesterday, but this morning I'm feeling sad. -
i'm so sorry this has turned alarming. I know you're frightened and I hope you get your results as soon as possible. -
No advice, but wanted to send along some (((HUGS))) as I am sorry you are having to go through all this. -
No advice here either, just more (((Hugs))). -
Thanks for the hugs. It's nice to have support from the ladies on these boards.
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We'll be thinking of you, and really hope you get the results before Thanksgiving.
(((Hugs))) -
jmb- virtual hugs- I think the good thing I am hearing is that you are now hooked up with the CC Main Campus where they have surgeons specializing in breast and probably the latest and greatest in digital mammography and other diagnostic imaging. The fact it was not there a year ago probably has everyone very attentive as its a "new" development and warrants checking out completely. Finding out more than what you originally thought was happening is a downer but as several others have posted, you don't want to miss anything that requires different treatment options. Keep us posted please -
My Dear - I was just 3 wks.ago diagnosed , through stererotactic biopsy, with DCIS. Don't know what my ultimate result will be, until path after lumpectpmy (which I'm really sad about). I am new here; can't give you much real advice. Still; I am a person and a counselor. We (you and I) are immediatly put into a world that 3 weeks ago, we didn't know was ours, didn't know existed, for us. Such a mixed- bag. Are we lucky. because we are possibly OK, because we don't live in Syria , because we have not lost a limb, or a partner? I don't know. To me, after life being hell these last 5 years, I don't feel so lucky. On the other hand, my best friend of 30 years, Gil, has a prostate cancer; everyone thought great outcome. Now, it's spread to his bones. With treatment, he can have a few years. And, here I am, with my little Low-grade DCIS, worrried about small possibility of recurrecnce, and worried about my breast. If it would make Gil live to be 90, they could take BOTH of my breasts, no pause. We are all living in the reality we are livng in. Your situation is trying. I send you my love, my prayers, and all good thoughts. I'm scared, at my level, too.. Love - P.
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No advice here, just even more (((Hugs))) that you receive good news quickly. -
Wyo, I see you're doing radiation. Hope you're feeling well. I went through that 4 years ago, and other than being tired at the end, it wasn't too bad.
percy, I am so sorry about your friend, and so sorry for your diagnosis also. I know how hard it can be emotionally when you have a DCIS diagnosis and you watch others who have it much worse, yet it is very real and scary regardless. I had DCIS 4 years ago, and honestly never thought I would be back in this place. Denial maybe. Haha! I watched my best friend's 9 year old daughter die from neuroblastoma 2 years ago, and it was the most heartbreaking thing I've ever seen. I loved her very much and miss her sweet giggle. Cancer is an ugly beast, no matter how it shows up. My faith is what gets me through. I read this last night, and it gave me strength...
We pray that you'll have the strength to stick it out over the long haul - not the grim strength of gritting your teeth, but the glory-strength God gives. It is strength that endures the unendurable and spills over into joy, thanking the Father who makes us strong enough to take part in everything bright and beautiful that He has for us.
-Colossians 1:10-12 -
Thank you so much. My thoughts are with you for a really happy outcome. - P.
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I had my second stereotactic biopsy in a month yesterday. It hurt much worse than the last one. Maybe because my breast was still tender. It didn't seem like it was numbed as well. Anyhow, I was expecting my new breast surgeon to do the biopsy, but it was a breast imaging radiologist. The Cleveland Clinic breast center is so large, and apparently everyone is a specialist at something. So the radiologist who did the biopsy said he will call with results probably Wednesday mid-morning. My breast surgeon told me that she thinks it's cancer, so I am prepared for that, and actually am okay with it, knowing God uses my hurts for good. I'm not freaking out while I wait, but I do feel some sadness. Wishing I didn't have to go through this. If she's wrong, and I get a good call tomorrow, it will just be a bonus. Hoping all you ladies are doing well. -
Hi jmb, thinking of you and praying for you. I know you want the results on Wednesday, so I hope that happens. That would be an amazing turn-around time. -
The pathology is right there at the clinic, so they don't have to send it anywhere. He said they have up to 5 days to do it, but the average is 2. He also said if they didn't have it by lunchtime, he would start bugging them. I will definitely be disappointed if I have to wait until Friday.
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