Recurrence after bilat mastectomy?

SusansGarden, I think you're right than cancer rarely develops in the breast tissue, although I think sometimes it does (does anyone know this for sure?). But what also happens is that even after a MX, there is a small amount of breast tissue left, against the chest wall, against the skin and possibly around the outside edge of your breast. I've read that about 3% of breast tissue remains. Within this breast tissue, there are tiny remnants of the ducts and lobules. That seems odd but apparently that's the case. That's how it is that even DCIS can recur (or develop anew) after a MX. DCIS only exists and can only thrive within the ductal tissue, so obviously there must be some ductal tissue left. Not a lot, of course, which is why only 1% - 2% develop a new primary after a MX. But to my understanding, that's how it happens.



Violet, your comment helped me crystallize my thoughts. It's true that we can never know if we've cured - and it's really important to always remember that - but if all the signs are favourable, there is no reason to not choose to believe that we've been cured. It's an important distinction. I'd rather live believing I've been cured than worrying that I haven't been. If it turns out that I'm wrong, my mistaken belief won't have changed a thing except that I'll have lived worry-free for years.

Great discussion. Many excellent points.

This is an excellent discussion!



Violet, thanks for the heads up and the invite to this thread.



I have to admit, I've never been more confused in my life than I have in the past three months. Just when I think I'm ok and I know what I'm doing, and I'm good with it, there's a new study or statistic that makes me wonder. This disease is mind boggling!



I've had my bi mx, working on the expansion now. No nodes involved, great margins on the tumor, the path report says it didn't spread to the skin or other tissue, my onco score is 29. Not good, but I decided no additional therapy for me. Qol is extremely important to me. The mo and the surgeon however are pushing the tamoxafin. I understand my recurrence rate is 19% with it, and higher without it, but then I see on here that there are people who basically threw the book at their cancer and did all the treatments and had a recurrence anyway. So why the big push? Is it money from the drug companies?

MSsusan, it used to be after 5 years without a sign of cancer you were considered "cured"...interesting that it's now after 20 years!! 

I think part of the percentages are very skewed because of the late age of the AVERAGE woman diagnosed with breast cancer. I was considered young at 50!!! I think most percentages were made from women in their 60's and 70's which means, of course, that they either had other health issues or died a natural death. Now with women getting screened at earlier ages it research will begin to tell us the "real" numbers over time.

So, if breast cancer starts in the nodes and lobes, why do so many women get chemo (full body) and rads (breast)??? (I do know the answer, it's due to that "random" cell that might escape.....) So, considering that the cell is just waiting for the perfect storm (or, for Colt, that random dice roll....) then anyone could get mets!!! Remember, there's a difference between local recurrence and mets.....

I had a rare cancer type, Papillary, they really looked at all my breast tissue closely and found Isolated Tumour Cells. That means that little bitty cells were already floating around my system looking for a new home. That's what they found in my breast. What was already in the rest of my system that they didn't get???? (I didn't get chemo as my doc said to "save the big guns until next time!!") So does everyone else have ITC's??? Do you know if you do???

Beesie, {{{{{ hugs }}}} for your mets scare!!!

Barbe, just to be clear-----I don't believe in the random dice roll.



I believe more that we don't know enough about why people get breast cancer or recur, so it seems random-----but I believe there's an order to it.



We know a lot about fires. How they start. Why they start. What combinations of conditions increase their probability slightly/ moderately/ greatly, etc.

We can even go in after a fire and determine how it started.

We know how to prevent them and how to extinguish different kinds.



We need this level of knowledge when it comes to BC... but we're so far from that, so it appears random (because we cannot explain it)---- but there are reasons.

Ha! You got me, Barbe. Lol.

I always say it's a crap shoot.  But I too believe that it's only because they/we just don't know.  When we are choosing treatment..it's a crapshoot.  Chemo may or may not stop the cancer for recurring.  Hormone therapy may or may not stop the cancer from recurring.  Surgery alone may or may not end your cancer journey.  We have statistics, we have tests, we have best guesses..but nothing that can tell us for certain.  

You are placing your bets based on the information you have at the time and the type of treatment you are comfortable with.  Then you just have to hope you either made the right choice, or that your fate wasn't predetermined no matter what you would have chosen.  Either way, you will never know for certain.

Beesie,

I have a question for you about staging 1a and 1b. This all reminded me and I had forgotten that my second opinion oncologist mentioned a while back I could be 1b something about being borderline... So I had my check up with my original oncologist surgeon last week I mentioned it to him and he agreed but we got off track and I never got it clarified.

So what I'm wondering is how the hell could I maybe be borderline 1b? It cannot be because of the size of the IDC tumors... They are well under 2 centimeters so does that mean it has to have something to do with micromets?....although path. says no node involvement...? It does say tumor on 1 side was near axilla...????



Or I'm thinking it could be because of the size of the DCIS I ALSO had in both breasts... I'm so confused now...just sent email to Oncologist...Sigh...

ANYONE?

KathinDC:  Thank you, thank you, thank you, for posting Dr. Susan Love's speach at Stanford.  She is my hero.  Her book is the one I turned to when i was first diagnosed with DCIS and had BMX & SLN and everything clear.  Her book is the one I turned back to just two years down the road when I was diagnosed with IDC in a chest wall recurrence (&/or mets to the lymph - still undetermined).

If you didn't watch the YouTube of the speech, take the time to go back and click the link.  Get comfortable since it's 30 minutes.  Prepare to laugh - since she's funny - and prepare to learn A LOT about BC.  I think she's right.  We need to stop focusing on awareness & treatment and start spending our money looking for a cure - like a vaccine.

And thanks to all of you for weighing in.  I think it's great that we've been able to continue this discussion & still respect each other's feelings & beliefs.  What a wonderful support this website & discussion boards have been for all of us.

Beesie,

I bet you are right!!! Knew I should ask YOU...:)!! My IDC tumors (both sides) are about 1/2 inch each. It is soooo confusing to ME when sometimes they are measured & interchanged in cm or mm or inches!!! And I HAVE looked at the staging sites...but I still get confused...so many different scores to consider/figure out!

I think I need to print out a few Staging site pages & sit down & look at EVERYTHING again...OY!

Thanks so much!

I'll have to check out the great links that have been posted here..;)

I'm glad you asked barbe!  I was just as confused as you were!

Violet, don't worry about your tumour being near a node!!! The nodes were MADE to stop disease!! And even far from the nodes, a tumour could send out cells that are caught by the nodes, so proximity has nothing to do with it. Think of a node as a strainer in a sink. The strainer catches the crap that wouldn't go down the drain!!

My Onc told me that my ER+ breast cancer is slow growing and to NOT expect a recurrence in the first five years. Now that I'm just short of 5 years, I see her every 4-6 months instead of every year. You are a grade one, which means your cancer is slow growing as well. The old adage of "You are cured if your cancer doesn't return in 5 years" is crap as we've said. I don't expect any stars for reaching 5 years as it's now that I am being watched even closer!!

Lucky, there is a "two week rule" that any new pains or complaints, say bone pain, nausea, etc get checked by your PCP first and if he is concerned or gives you scans, then you see your Onc. Everyone is like that, right up to the stage 4's. You don't want the amount of nuclear stuff in the scans to be another worry!!

Hi ladies!

I was looking for a thread similar to this.  I had my bmx 7/11 and am blessed with no chemo or rads however was recommended Tamoxifin.  I have the script but I have not filled it yet.  EVERY decision I have made since my dx i have been confident in but I am just on the fence about this one.  I already have high cholesterol, blood clots, cataracts and uterine cancer run in my family. my mo told me if I take it I will have a 5% chance of reoccur and if I don't 15%... that is only a 10% difference?!?! I should mention that my orig. dx was dcis right breast I choose bmx and IDC was found in the left. Any thoughts?

Much Love,

Amy

Rowan47, thank you very much for the quick response, unfortunately I don't know at this point what to do.  I am certain I will get to a comfortable decision but every decision I have made up until now I have been very content with but this one just has me stumped!

Thanks again!

Amy