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Old 01-13-2012, 01:02 AM   #341
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Yep, it's been a LONG time. I keep thinking I'll update here, then something else comes up, and I think...I'll wait til I know more...and then I find out something else, and so on, and so on, etc., etc. So...I figured I'll just share what I've been through and know so far and you guys can tag along with me on the "unknowns".

OK, recap, since I can barely follow this mess, I know you all certainly will need a summary!:

9/20/11: had bilateral mastectomies with 1st stage reconstruction

10/11: 2nd opinion path showed cancer bilaterally (we thought right side was prophylactic going into surgery), with close margins bilaterally, positive margin L behind spared areola. Bilateral radiation recommended due to close margins. No signs of invasive cancer - all cancer staged 0 at this time (excellent prognosis)


11/10/11: had repeat mammo's and MRI prior surgery to remove L areola. Mammo on R showed one remaining suspicious calcification. Surgeon feels cannot localize it at this time well enough to biopsy - will wait and reassess in 6 months (3rd opinion facility feels I should have this done ASAP - but need to heal from 2nd recon surgery so likely will do this end of Feb/March)


11/15/11: had surgery to remove L areola due to positive margins. Pathology showed all clear afterwards.

12/23/11: 2nd stage reconstruction surgery...6 hour surgery - uggh! Rough at first, doing much better now.

1/9/12: 3rd opinion on bilateral radiation - most likely no on L, but they are staining more slides. Most likely no on R, but still awaiting final tumor board recommendation (they decided to do a tumor board on my case due to its complexity - so thankful).

1/10/12: 3rd opinion medical oncologist calls me. The tumor board did not like one small spot they saw on my slides on the left. They couldn't be sure, so they ordered more slides from my tissue block in Miami which they stained themselves (I didn't realize...not all of your tissue is looked at...initially they just take a random sample...can you believe that?).

Well, it came back as I actually had a small spot (3 mm) of invasive ductal cancer on the left side. This was stunning, shocking, completely shocking news. The oncologist reassured me that since it is small and my 3 nodes that were taken were clear, that my prognosis is still good. However, I have been moved up (or down, however you look at it) a stage (stage T1a, for those who care - it's still very early breast cancer with a good prognosis). I now will have to take a medicine called Tamoxifen for 5 years to reduce my risk of the cancer taking up residence somewhere else in my body. Scary, scary. She said although it is a very, very small risk, it is possible some cancer cells had escaped and gotten into my blood stream before mastectomy. Soooo, this is why I will take that medicine.

On to more crazy news...they are now obtaining the entire tissue block from Miami to look at. I suspect they are looking for more invasion and also are trying to get more tissue to test for certain factors and assess how aggressive this cancer is. I'm not sure if this is what they are doing, but I think so based upon my reading. I think they are trying to determine if I need chemo or not.

All I know is I now feel in extremely good hands and and SO unbelievably thankful I went for a 3rd opinion. They found something I wasn't looking for...but...my gosh - I want every fighting chance to beat this! I can't believe I've been walking around unprotected for 4 months already. It's pitiful, disgusting...I'm ANGRY. But the biggest thing I feel is thankfulness that I even found out and now can treat it appropriately.

So...we wait...again!
So, do you feel your initial care was substandard? Or is it just that much of a crapshoot as to whether treatment catches everything?
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Old 01-13-2012, 02:23 AM   #342
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I have followed your story. Just want to send you best wishes and thumbs up!
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Old 01-13-2012, 05:06 AM   #343
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Take care, simple girl, and best wishes.
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Old 01-13-2012, 08:16 AM   #344
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So, do you feel your initial care was substandard? Or is it just that much of a crapshoot as to whether treatment catches everything?
I don't believe my initial surgeon did anything wrong except for saving the areola on the left - I think the cancer was too close to take that risk. However we were able to alleviate that issue by the 2nd surgery which completely removed it - and nothing was found in that specimen, so, actually, there was no risk to me with sparing it after all (but no way to know - better to be safe than sorry).

Regarding the other close margins, it just happens to be that my cancer grew close to the chest wall on the left and close to the skin on the right. The cancer cells are microscopic, so it is impossible for the surgeon to know for sure how good the margins are. On the left I was protected more b/c he removed the pectoralis fascia, which acts as a barrier to DCIS. On the right, where it was found close to the skin, the surgeon can only remove so much breast tissue near the skin, or the skin will die from lack of blood supply. So the surgeon walks a fine line with how close he can scrape tissue from the skin without it dying. The only other thing that perhaps should have been done is taking a radiograph of my specimen prior to finishing surgery to see if any calcifications (which indicate DCIS) were seen near the margins, which would tell the surgeon to go back in and try to take a bit more. This is not done routinely, though. It is, however, something I wish had been done in my case.

Regarding the close margins, I think overall it was just bad luck for me for where my cancer happened to grow.

I DO believe the pathology analysis was substandard. I recognize that others on here have said they can't look at all of the tissue b/c there are sooo many cells. However, I've done some reading, and the American College of Pathology set new guidelines in 2009 advising the entire specimen be analyzed:

"The changes in pathology practice, generated by the necessity of examining and detecting minute foci of disease in a large resection, were dramatic and culminated in a new set of formal guidelines by the American College of Pathology in 2009 (1). The new guidelines required serial, sequential tissue processing of the entire specimen, minimizing the likelihood of missing microinvasion, and permitting accurate assessment of size and margin width. The serial subgross technique had been an integral part of prospective nonrandomized studies (2, 3, 4, 5, 6, 7) for some time, and had been validated in a formal registration trial by Hughes et al (2009)8. Arguments against this approach were that it was too costly and/or too cumbersome, and not “randomized” but have not hindered widespread acceptance of the new guidelines.." from: Perspectives in Breast Cancer Pathology

And from the Archives of Pathology (1) referenced above: "For specimens with a known diagnosis of DCIS (eg, by prior core needle biopsy), it is highly recommended that the entire specimen be examined by using serial sequential sampling to exclude the possibility of invasion, to completely evaluate the margins, and to aid in determining extent."7–9 An Error Occurred Setting Your User Cookie

My initial pathology report said that my specimen was "serially sectioned lateral to medial" so I thought it was fully analyzed. However later it said "sections submitted as follows"...I didn't realize that meant not all sections were submitted.

Usually I'm not one to get vindictive and angry, but...apparently standard practice in my pathology analysis was not followed...unless I'm misunderstanding something.
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Old 01-13-2012, 12:34 PM   #345
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Christmas week of 2010 DW was told she needed a biopsey on a lump in her rt. breast. We decided not to tell anyone until after the Holidays. Feburary 2011 started her surgery. DW has the same thing as Simple Girl. Today I am sitting with her at the Cancer Center on her next to last infusion of drugs. She completed her chemo and radiation treatments. She has been taking the oral drug (chemo in a pill form) since she finished her radiation which was about a month ago. Chemo was no cake walk for us. It took it's toll on her from day one. Sure hope you do not need it.
Anyway it is true you are now in a special group of ladies and plenty of support.
Take care of your self and if you do need anything please ask. If DH needs any advise he can ask too. MGB Oddjob
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Old 01-13-2012, 05:53 PM   #346
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Christmas week of 2010 DW was told she needed a biopsey on a lump in her rt. breast. We decided not to tell anyone until after the Holidays. Feburary 2011 started her surgery. DW has the same thing as Simple Girl. Today I am sitting with her at the Cancer Center on her next to last infusion of drugs. She completed her chemo and radiation treatments. She has been taking the oral drug (chemo in a pill form) since she finished her radiation which was about a month ago. Chemo was no cake walk for us. It took it's toll on her from day one. Sure hope you do not need it.
Anyway it is true you are now in a special group of ladies and plenty of support.
Take care of your self and if you do need anything please ask. If DH needs any advise he can ask too. MGB Oddjob
Oddjob thank you so much for sharing your story - I certainly wish you and your wife all the best and am so happy to hear she is almost finished with treatment! Here's to hoping no chemo for me.
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Old 01-13-2012, 06:12 PM   #347
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Usually I'm not one to get vindictive and angry, but...apparently standard practice in my pathology analysis was not followed...unless I'm misunderstanding something.
Ok, so people don't think I'm going off the deep end, I've calmed down a bit now (that was SG's version of a rant, LOL).

I'm not a pathologist, nor do I pretend to be one on tv. I did try to read a bit more to understand what is done. I think they slice the entire specimen serially in small sections (perhaps 1 cm slices I read in one reference). Then they use a microtome to shave off a very small slice from each section which is made into a slide.

Problem is, with DCIS, microinvasions can be small (aka mine at 3 mm), and if the invasion is in the middle of that 1 cm slice, it gets missed. I guess this is why some women (a very small percentage) who are diagnosed initially as DCIS only end up with metastatic cancer 5 or 10 years later. The invasion was never caught.

If you have widespread DCIS, like I did, you are supposed to have more slides taken than normal to try and minimize the chance that something is missed.

Once again, this is just my summation as I try to understand why this was almost missed in my case. I'm just glad someone caught it and feel very, very lucky they did, so that I can be treated and monitored properly.

If someone has a better understanding of how this works, feel free to educate me...I'll try not to go off the deep end again!
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Old 01-13-2012, 10:03 PM   #348
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Ok, so people don't think I'm going off the deep end, I've calmed down a bit now (that was SG's version of a rant, LOL).
If someone has a better understanding of how this works, feel free to educate me...I'll try not to go off the deep end again!
Wow, SG, your "deep end" is my wading pool! I admire you so much for taking charge of this whole situation, as much as is humanly possible, and taking time to explain it so clearly to us. I believe many of your readers will find this helpful, for many different reasons. Someone said it before, but I believe that your avatar should be changed to Super Girl! Best wishes for a speedy full recovery.
BTW in the distant past, my aunt needed tamoxifen to treat her ovarian cancer, but they hadn't synthesized it yet, they still made it from yew trees, and she told me she couldn't get the treatment because there weren't enough yew trees to make the extract from (they grow in old-growth forest) and it was too rare and costly for someone in her condition at her age. So I'm glad you can get it, even if I'm sorry you need it.
We all really appreciate you keeping us posted. Cheers!
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Old 10-09-2012, 09:50 AM   #349
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Hello all! I haven't been on the site much b/c of being preoccupied with my health stuff, but I hope to resume being a more active member soon.

Much has happened since I last updated my thread. I found out my tiny invasive cancer was the aggressive HER2+ type. Because it was so tiny, I received conflicting opinions on whether I needed chemo and Herceptin or not. I finally flew to see a specialist at MD Anderson, and she strongly recommended tx.

So, I finished my 6 weeks of radiation in March and then a few weeks later had my port installed for chemo...and unfortunately had a complication of a partial lung collapse. Eeeks! That landed me in the hospital for 2 days. I did recover fully from that, thankfully. Then I did 3 months of chemo with Herceptin. That sucked royally, to put it mildly. I finished chemo in June. I am now 4 months PFC (post f*cking chemo...yep, it deserves that title). I am doing much better, although I do have some residual side effects from chemo that I am dealing with.

I am back to work and dance and all my normal activities now - feeling much better - yahoo! I am considered cancer free at this time - "NED" - no evidence of disease. Now my biggest challenge is trying to return to "normal" life and not let the recurrence fear "demons" get into my mind. I'm doing ok with that, but it does take some effort to not let my worries about the future ruin my todays...my goal is to not let cancer take any more enjoyment from me!
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Old 10-09-2012, 09:56 AM   #350
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Good luck, and I hope you continue to improve!
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Old 10-09-2012, 09:56 AM   #351
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Hello all! I haven't been on the site much b/c of being preoccupied with my health stuff, but I hope to resume being a more active member soon.

Much has happened since I last updated my thread. I found out my tiny invasive cancer was the aggressive HER2+ type. Because it was so tiny, I received conflicting opinions on whether I needed chemo and Herceptin or not. I finally flew to see a specialist at MD Anderson, and she strongly recommended tx.

So, I finished my 6 weeks of radiation in March and then a few weeks later had my port installed for chemo...and unfortunately had a complication of a partial lung collapse. Eeeks! That landed me in the hospital for 2 days. I did recover fully from that, thankfully. Then I did 3 months of chemo with Herceptin. That sucked royally, to put it mildly. I finished chemo in June. I am now 4 months PFC (post f*cking chemo...yep, it deserves that title). I am doing much better, although I do have some residual side effects from chemo that I am dealing with.

I am back to work and dance and all my normal activities now - feeling much better - yahoo! I am considered cancer free at this time - "NED" - no evidence of disease. Now my biggest challenge is trying to return to "normal" life and not let the recurrence fear "demons" get into my mind. I'm doing ok with that, but it does take some effort to not let my worries about the future ruin my todays...my goal is to not let cancer take any more enjoyment from me!
Welcome back, SG. Good news after a long rough spell. I am very glad for you.

Ha
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Old 10-09-2012, 10:00 AM   #352
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Welcome back! What an ordeal! Hopefully, we can help you focus on the positive.
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Old 10-09-2012, 10:28 AM   #353
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What an ordeal ! I am so glad you are on the mend . Maybe a group of other Cancer survivors would help you with the mental aspects ? Take care & Keep dancing !
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Old 10-09-2012, 10:31 AM   #354
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Hi simple girl, nice to see ya' around again. Sorry you had to go back to work, but it is good that you can. Stay healthy.
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Old 10-09-2012, 12:08 PM   #355
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Dancing bear and I are so pleased to hear from you....
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Old 10-09-2012, 12:10 PM   #356
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What an ordeal ! I am so glad you are on the mend . Maybe a group of other Cancer survivors would help you with the mental aspects ? Take care & Keep dancing !
Thanks! I have an extensive online support group of FANTASTIC women I couldn't have done this without! And I also go to a monthly Young Breast Cancer Survivor's support group which is great. There are a ton of resources out there if you just look for them.
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Old 10-09-2012, 12:17 PM   #357
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Hi simple girl, nice to see ya' around again. Sorry you had to go back to work, but it is good that you can. Stay healthy.
Ha ha ha - it's only part-time and doing something I love on my terms. Fortunately hubbie is happy with his FT job and has made it very clear to me that he doesn't want me to work if it makes me unhappy. I am so thankful for the years we spent working towards FIRE. Having a big nest egg sure did take away financial pressure over this past year.

Now...did my diagnosis ruin our chance to FIRE b/c of insurance issues? We'll see how this all goes with the Obama plan in 2014, if it doesn't get repealed. Without it, I'm guessing my chances of finding a plan we could afford would be zero. It's obviously a big concern of mine.
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Old 10-09-2012, 12:34 PM   #358
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Very happy to see things getting back to normal for you SG.....
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Old 10-09-2012, 12:37 PM   #359
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Now...did my diagnosis ruin our chance to FIRE b/c of insurance issues? We'll see how this all goes with the Obama plan in 2014, if it doesn't get repealed. Without it, I'm guessing my chances of finding a plan we could afford would be zero. It's obviously a big concern of mine.
Not necessarily, but it does leave fewer options. Assuming your coverage is from your DH's policy, under the current system when he leaves his job COBRA regs allow him to continue with the same group policy for 18 months (at full, unsubsidized price + administrative fee). After 18 months you would then get a conversion policy, which is guaranteed issue, individual coverage, for each. You won't have much choice, most states have only a few conversion options, it doesn't assure you the coverage will be the same, but it will have to meet coverage standards (set by the state) and pre-existing conditions cannot be denied. The price tends to be steep, but it is an important option for those that would be otherwise ineligible for health insurance.
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Old 10-09-2012, 12:44 PM   #360
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Not necessarily, but it does leave fewer options. Assuming your coverage is from your DH's policy, under the current system when he leaves his job COBRA regs allow him to continue with the same group policy for 18 months (at full, unsubsidized price + administrative fee). After 18 months you would then get a conversion policy, which is guaranteed issue, individual coverage, for each. You won't have much choice, most states have only a few conversion options, it doesn't assure you the coverage will be the same, but it will have to meet coverage standards (set by the state) and pre-existing conditions cannot be denied. The price tends to be steep, but it is an important option for those that would be otherwise ineligible for health insurance.
Yes, coverage is from DH's policy. Is the conversion policy you are talking about what is considered the state's high risk pool? Or is it the new option that will be available under the Obama plan in 2014? Anyway to find out what the price likely would be before pulling the plug on working?
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