I have breast cancer. :-(((

[antmary]

Same here, SG!
Keep on your path awake and aware, questioning, and asking. Thank goodness you listened to your intuitive re: getting other opinions. You are an inspiration to us all!

 

[simple girl]

My heart went out to you while I was reading your story again. I am so glad that you went for the extra opinions. I don't know that I would have went for a second opinion, let alone a third one. You have given me valuable information, in case I ever develop any problems. I am so glad that everything is in the early stages. Just remember that there are many people that love you on here and are keeping you in our thoughts while you are going through all of this. Thank you again for posting about this and all of your updates. You are providing a valuable service . Best wishes.

Thank you Dreamer! I'm sooo glad sharing my story is helpful to others - that is definitely something that makes me feel good amongst all the cancer cr*p! LOL

 

[simple girl]

Wishing you nothing but the best!

On a personal note I'd like to know what you think in ref. to the tamoxifen. (side effects) My family has a very strong history of breast cancer and my doc would like to see me on the tamoxifen for preventive care.

Thanks

I have only done some preliminary research on Tamoxifen, but the most serious concerns are blood clots and endometrial cancer. Here is a link that describes Tamoxifen, benefits, risks, etc:

Medscape: Medscape Access

I would want to know, if I were you:

1) since you don't have cancer, and thus you don't have tissue to find out if you are estrogen-receptor positive, how do they know this will work for prevention? (my cancer cells are 95% ER positive, so I am a good candidate for Tamox)
2) you have a family history, but have you been genetically tested? If you are BRCA1 or BRCA2 positive, you may have a stronger reason to take it, I would guess
3) what research, if any, has been done on using Tamox as prevention in women who have never had cancer?

If you want to learn more from women who may have faced this question, I would go to the boards I frequent and pose your question, specifically on the high risk women forum: Breast Cancer Forum: High Risk Women
Since I already have cancer, my knowledge is focused on that and on prevention of recurrence; prevention of a initial cancer would be a whole different set of risk vs benefit scenarios, so I think those gals on the high risk forum would be most well versed in this. Hope that helps!

 

[Meadbh]

That's common sense, but AFAIK they're looking at individual cells, and even a very tiny tissue sample contains a LOT of cells.

Exactly.

Kudos to you, SG, for your strength and courage in the face of this unwanted challenge. You continue to be an inspiration.

 

[tightasadrum]

Simple girl,
Sounds like you have things under control, your control. DW just ended three years of tamoxifen, if that is the hormone positive treatment. She found it to be a pretty rough drug that affected many things in subtle ways. I could ramble on for pages on the treatment and drugs, she had chemo, but not radiation, but she is now doing great. You are spot on to take control of your personal situation. DW spent untold hours over the last three years researching all aspects of her case. The doctors told her she was way over involved, I thought she was being pretty obsessive, but she is a very smart woman. She gave herself, in my opinion, an advanced degree in this stuff. She got rid of one oncologist, a known jerk, and took herself off of tamoxifen after a little over three years with the new oncologist's concurrence. Statistically, a minimal help after that based on the early diagnosis, also 1B, and the side affects, can affect your heart. She has a family history of heart problems.
So do your research, ask questions, and if you don't think the answer makes sense, check further. It sounds like you're already doing it. Good luck.

 

[simple girl]

Simple girl,
Sounds like you have things under control, your control. DW just ended three years of tamoxifen, if that is the hormone positive treatment. She found it to be a pretty rough drug that affected many things in subtle ways. I could ramble on for pages on the treatment and drugs, she had chemo, but not radiation, but she is now doing great. You are spot on to take control of your personal situation. DW spent untold hours over the last three years researching all aspects of her case. The doctors told her she was way over involved, I thought she was being pretty obsessive, but she is a very smart woman. She gave herself, in my opinion, an advanced degree in this stuff. She got rid of one oncologist, a known jerk, and took herself off of tamoxifen after a little over three years with the new oncologist's concurrence. Statistically, a minimal help after that based on the early diagnosis, also 1B, and the side affects, can affect your heart. She has a family history of heart problems.
So do your research, ask questions, and if you don't think the answer makes sense, check further. It sounds like you're already doing it. Good luck.

Thank you for the encouragement and input! Yeah, I'm hoping I take well to the Tamoxifen and am not one of the ones who gets all the nasty reactions. <sigh> Time will tell. Lots of family heart history here, too, so thanks for the heads up...will be watching that one closely...

 

[DangerMouse]

Wow, you keep getting curve balls thrown your way. You are your best advocate and you have done a damn fine job making sure this thing is done right.

Keep positive because you are going to slay the big C-monster.

 

[Avalon]

SG, I'd like to second the very thoughtfully worded post above by Dreamer.

And as antmary has already said, thank you for being an inspiration to all of us.

 

[Moemg]

I amazed at how well you are handling these crises . You really are an inspiration to me ! You deserve bags of potato chips and good beer to wash them down and maybe chocolate for desert !

 

[simple girl]

I amazed at how well you are handling these crises . You really are an inspiration to me ! You deserve bags of potato chips and good beer to wash them down and maybe chocolate for desert !

I might get kicked off the Wednesday weigh in board, but...BRING IT! LOL!!!!

 

[kz]

Thanks for the reply, SG. Yes, we were tested and and negative for BRCA 1 and 2. My identical twin, an 11+ yr survivor, was ER positive. Mother was a 26+ yr survivor but oldest sister died from this disease as did my grandmother. To clarify my old doc wanted me on the drug...new doc says no.

 

[Alan]

I amazed at how well you are handling these crises . You really are an inspiration to me ! You deserve bags of potato chips and good beer to wash them down and maybe chocolate for desert !

+1

I might get kicked off the Wednesday weigh in board, but...BRING IT! LOL!!!!

Never!!

Treat yourself, we'll look the other way

 

[simple girl]

Thanks for the reply, SG. Yes, we were tested and and negative for BRCA 1 and 2. My identical twin, an 11+ yr survivor, was ER positive. Mother was a 26+ yr survivor but oldest sister died from this disease as did my grandmother. To clarify my old doc wanted me on the drug...new doc says no.

So, so sorry to hear about the extensive breast cancer family history. Such a hard decision for you to make! I highly recommend you check out that forum I noted. You can learn so much from talking to other women who are in the same position - just learning the right questions to ask your doctor is huge!

You may want to consider getting a 3rd opinion - if you live near a NCI center that would be a great place to go: Cancer Centers Program - Cancer Centers List

 

[simple girl]

+1
Never!!

Treat yourself, we'll look the other way

 

[Moemg]

+1



Never!!

Treat yourself, we'll look the other way

Not only will we look the other way we will subtract 10 pounds for stress weight !

 

[Buckeye]

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?

 

[chris2008]

I have followed your story. Just want to send you best wishes and thumbs up!

 

[obgyn65]

Take care, simple girl, and best wishes.

 

[simple girl]

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.

 

[Oddjobdth]

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

 

[simple girl]

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.

 

[simple girl]

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!

 

[toofrugalformycat]

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!

 

[simple girl]

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!

 

[Nemo2]

Good luck, and I hope you continue to improve!