Concerns even after 7 months from original dx

lisagwa

Hi, I am wondering where exactly to place this thread and hope to get some answers from others with experience here. Even though it is DCIS I still have lingering thoughts.



(1) Can DCIS ever recur as invasive?



(2) Being that my dx was (DCIS, grade 3) ER/PR-, would it have been better to be ER/PR+ and have tamoxifen or other med to help reduce 1-2% recurrence risk?



(3) PS said that in 3 yrs, I think he said 3, I would get MRI to make sure implants were in tact and no rupture. Nurse practitioner said she would only be able to check skin above implants for lumps. What happens if there was a recurrence on chest wall under implant and it's not found until 3 years when MRI is done?



(4) Nurse practitioner said she would check me every six months for 5 years. What about after the 5 years...isn't recurrence watched closely up to 10 yrs?



thanks.

ej01

Lisa,  I dont have answers to all of your questions.  I am one year post treatment, and something showed up on my last mamo that looked to be a cyst.  When I spoke to my BS about it she said that this would be too early for a reoccurance to show up anyway.    So maybe that's why they are waiting 3 years to check for a reoccurance at the chest walls, because it would not show up until later anyway.

Beesie

Lisa, let me try to answer your questions, as best I can.

(1) Can DCIS ever recur as invasive?  Yes, approx. 50% of DCIS recurrences are invasive cancer. The recurrence starts as DCIS but is not found until the cancer has progressed to become invasive. This is why monitoring for any new nodules or lumps is very important, even for those who've had a BMX. The good news for those of us with implant reconstruction is that implants are put behind the muscle and that pushes the muscle right up under the skin. So any recurrence that might develop, either against the chest wall or muscle, or against the skin, will be in front of the implant and therefore should be very noticeable very quickly.

(2) Being that my dx was (DCIS, grade 3) ER/PR-, would it have been better to be ER/PR+ and have tamoxifen or other med to help reduce 1-2% recurrence risk?  No. Tamoxifen is not recommended to those who've had a BMX for DCIS.  Tamox would be able to reduce recurrence risk from 1% - 2% to 0.5% - 1% (approx. a 50% reduction in risk) but that's a very small risk reduction - smaller in fact that the risks that you'd expose yourself to by taking Tamoxifen. So in fact your overall health risk is greater if you take Tamox. after a BMX for DCIS than it is if you don't take Tamox. That's why treatment guidelines suggest that Tamox. not be recommended to anyone who's has a BMX for a pre-invasive condition such as DCIS. 

(3) PS said that in 3 yrs, I think he said 3, I would get MRI to make sure implants were in tact and no rupture. Nurse practitioner said she would only be able to check skin above implants for lumps. What happens if there was a recurrence on chest wall under implant and it's not found until 3 years when MRI is done?  As I mentioned in answer to your first question, because the implant is behind the muscle, your muscle/chest wall is actually right up under your skin. So a recurrence that develops agains the chest wall would be just as noticeable as a recurrence that develops against the skin - because the chest wall and skin are squeezed together with the implant behind them. 

(4) Nurse practitioner said she would check me every six months for 5 years. What about after the 5 years...isn't recurrence watched closely up to 10 yrs?  The protocol from every surgeon is different. My surgeon saw me for only a couple of years but he emphasized the importance of continuing to monitor my reconstructed breast (I had a single MX) closely. It's just that he didn't need to be the one doing the monitoring. It's actually very important that you check your breasts regularly not for 5 years or 10 years, but for the rest of your life. Even after a BMX, you not only have a small risk of recurrence, but you still face a lifelong risk of a new primary breast cancer - although again it's just a small 1% - 2% risk. So it means that you should be doing breast self exams regularly. And once the nurse practitioner is no longer checking your breasts, you should ensure that you get an annual breast exam from either your PCP or your gyne. But here again the good news is that with no breast tissue in which to hide, finding a recurrence or new breast cancer is much easier - you'd likely notice any nodules that develop very quickly.  I do my BSEs in the shower. I put some body wash on my breast so that it's nice and slick and smooth, and then I run my hand over the entire breast, carefully feeling for any nodules.  With the smoothness and firmness of the implant, I'm pretty sure that I would notice even the tiniest 1mm nodule.

Hope that helps!  

Edited for typos only. 

Beesie

ej01, I think your BS was trying to reassure you, and what showed up on your mammo probably looked as though it was clearly benign and not a recurrence....but honestly, one year is not too early for a recurrence.  

A recurrence happens if all of the original cancer has not been fully removed from the breast. Over time any cancer cells that remain in the breast (and are not killed off by rads or hormone therapy or chemo for those who get chemo), may start to grow and multiply and become a recurrence.  Usually if it's only a few rogue cells that remain, it could be years before the growth is the large enough to be discovered as a recurrence.  But some cancers grow more quickly, or if a larger area of cells was left in the breast, those types of recurrences could become noticeable more quickly.  

So while most recurrences aren't usually discovered until a few years past surgery and the end of treatment, and while sometimes a recurrence might not develop until many years later (10 years or 15 years, if the remaining cancer cells stay dormant), it's certainly possible for a recurrence to be found 1 year or even just 6 months after surgery. 

lisagwa

Beesie - If you can further explain, I would appreciate it. (1) so, even after BMX, there is still 50% of invasive recurrence? Why would a person not be able to find it until it is invasive? Wouldnt it start in breast skin? (2) in your opinion, why do all the doctors pretty much say "you're cured, you'll live 80, go enjoy life, nothing to worry about."



Lisa

lisagwa

Ej01- did you have a lumpectomy or mastectomy?

BLinthedesert

Lisagwa, risk of reccurence after mx is ~1-2%, of *those that do recur* 50% of them will be invasive.  Which means 0.5-1% chance after MX of having a recurrence that is invasive.

There *might* (the literature is all over the place about this) be a slightly higher risk of recurrence with ER- negative tumors, but this is likely more of an issue with lumpectomy than MX (and, I too feel the same way about tamox - on the one hand I am glad it was not an option for me, on the other I wish I had a little more "comfort" with taking it).  Since you have had a BMX, you have reduced your risk of both a recurrence and a new cancer in the opposite breast as low as you possibly can.  

 Regarding follow-up - I want to reiterate what Beesie has pointed out -- you SHOULD get an exam by a professional at least every year for the rest of your life.  You are right about risks of recurrence or contralateral cancer - you are in the higher risk group.  That said, you have minimized this risk considerably, by having a BMX.

Good luck to you .... 

Beesie

Lisa, 

BLinthedesert said everything I would have said so I won't repeat any of that.

To your question about why doctors say "you're cured, you'll live 80, go enjoy life, nothing to worry about.", it's because you had both a BMX and pure DCIS.  Anyone who has a BMX reduces their risk of local recurrence and a new primary BC as low as it possibly can be. This is true whether you have DCIS or invasive cancer.

But women with invasive cancer still face the risk of a distant recurrence, i.e. mets. Having a BMX doesn't do anything to reduce that risk. A distant recurrence can develop shortly after diagnosis, or it can develop many years later, even 15 or 20 or more years later. This is why it's argued by some that breast cancer (invasive, that is) can never be cured. That's not really true - most women are cured by their surgery and treatment - the problem however is that women who've had invasive cancer can never really know with 100% certainty that they've been cured. Once you've had invasive cancer, the only time you can be completely sure that your surgery and treatment actually 'cured' you is when you die of something else (hopefully peacefully in your bed at the age of 95).

And therein lies the difference for those who had pure DCIS.  Pure DCIS cannot spread beyond the breast and move into the body; it cannot develop into mets. So with pure DCIS, the only risk is locally in the breast area. By reducing the risk of a local recurrence or new primary to as low as 1% - 2% with a BMX, you are as close to cured as anyone with BC can be.

If the doctors were to be 100% accurate, what they should say to DCIS patients who have a BMX is "you're cured, you'll live 80, go enjoy life, nothing to worry about... but be diligent and continue to check your breasts because there is a 1% - 2% chance that I'm wrong and at some point in the future you might develop a local recurrence or a new primary BC".

So yes, being diligent is important. If you develop a recurrence, you want to catch it as early as you can, hopefully while it's still DCIS and has not yet progressed to become IDC. So be diligent and get checked. But as I wrote in a post some time back, no one should live their life worrying about something that has only a 1% to 2% probability.   

jill47

Hi Bessie:  if a woman has pre-cancerous legions found in the breast tissue removed during BMX such as ALH and LCIS (o.k. I confess that is me) does that add a risk for the recurrance or are only cancerous cells from DCIS a concern?  Thank you.

Beesie

You can't develop a recurrence or a new breast cancer from breast tissue that's been removed. So whatever conditions you had in any breast tissue that was removed presents no risk, whether it was DCIS or a pre-cancerous condition such as LCIS or ALH. The only risk comes from the tiny amount of breast tissue scrapings that are left after a mastectomy, and what might remain in that breast tissue. If your diagnosis was DCIS, the presence of ALH or LCIS won't lead to a recurrence; a recurrence can only happen if some of the original DCIS cells are left in the breast tissue that remains. However if there was ALH or LCIS right at the margin of the removed tissue, this raises the possibility that there might be some ALH or LCIS in the scrapings that remain, and that might slightly increase future breast cancer risk (a new primary BC, not a recurrence).  But you have to remember that you are dealing with only a very small amount of breast tissue - I've read that generally only around 3% or less of breast tissue remains after a BMX.  My understanding is that a normal breast with LCIS presents about a 25% - 40% breast cancer risk.  If you have only 3% of your breast tissue, then technically you have only about 3% of that risk (0.75% - 1.2%).  I'm not sure that it's entirely fair to do the math that way but I'd guess that the risk level is probably not far off. 

The same is true for those who have a lumpectomy. Whatever was in the removed breast tissue doesn't matter at all; it's what might be left in the remaining breast tissue that counts. If there is nothing left in the remaining breast tissue from the original cancer - if all the cancer was removed surgically and/or killed off by rads or hormone therapy - then there won't be a recurrence, whatever the original diagnosis.  There will still be a risk of a new BC, but that risk will be the same whether you had IDC originally, or grade 3 DCIS or grade 1 DCIS. 

jill47

Makes sense, thanks Bessie!

lisagwa

I don't know why I have a hard time following this. I feel kind-of dense. Please, if you dont mind clarifying this in even simpler terms...



(1) how is it possible to have DCIS recur as possibly invasive when DCIS is not invasive. Does that mean that some cancer cells remained and grew on the skin and weren't caught so it spread? (2) how could there be a possibility in getting breast cancer in the other breast which never had cancer and was removed. there is no breast? (3) is it correct to say that DCIS cannot recur as mets?

Beesie

Let me try to reply, first with a simple answer, and then with the explanation (because not much about DCIS and breast cancer is simple).

(1) how is it possible to have DCIS recur as possibly invasive when DCIS is not invasive. Does that mean that some cancer cells possibly remained and grew on the skin but weren't caught so it spread?  Yes that's sort of what it means.  But it's important to understand that having an invasive recurrence doesn't mean that the cancer has spread.  

IDC (invasive cancer) develops from DCIS.  It's the same cancer and even the same cancer cell.  A cancer cell initially develops in the milk duct as DCIS. It's stuck in the duct and can't move beyond the ductal system of the breast. But over time this cancer cell continues to evolve. Eventually it develops the ability the break through the wall of the milk duct. When the cancer cell moves through the wall of the milk duct wall and enters the open breast tissue, it's now IDC. It's exactly the same cell that was once DCIS but it has advanced in it's development to become IDC.  It's not a new cancer.

A diagnosis of DCIS simply means that the cancer cells have all been found while they are still confined to the milk ducts.  The cancer was caught before it had the chance to evolve to become IDC. After a MX surgery, a few DCIS cancer cells might remain either against the chest wall or against the skin.  These DCIS cells might continue to evolve and eventually become IDC.  A recurrence may be found while the cells are still DCIS, before they've evolved any further, or it might not be found until after the DCIS cells have evolved to become IDC. But even if they've become IDC, it does not mean that the cancer has spread.  It just means that that cancer cells have now moved into the open breast tissue (rather than being confined to the milk ducts) and therefore they have the ability to spread.  But having the ability to spread and actually spreading are very different things. 

(2) how could there be a possibility in getting breast cancer in the other breast which never had cancer and was removed. there is no breast?  There is still some breast tissue, even after a MX. 

A MX removes most of the breast tissue but a small amount of breast tissue always remains.  It's simply impossible for the surgeon to remove it all.  There might just be a few tiny scrapings of breast tissue against the chest wall or the skin, but that is breast tissue. Breast cancer can develop in any breast tissue. This is why a MX or BMX does not completely eliminate the risk of breast cancer.  With so little breast tissue left, the risk is very low, but there will always be some breast tissue left and so there will always be some risk of breast cancer. 

(3) is it correct to say that DCIS cannot recur as mets?  Yes. DCIS cannot recur directly as mets.

If you had DCIS and it was all removed and you never develop invasive cancer, you cannot develop mets.  But if you had DCIS and you have a recurrence that is not discovered until it is IDC, then the situation changes.  IDC can develop into mets.  So for someone with DCIS to develop mets, they must first develop IDC, either as a recurrence or as a new primary breast cancer.    

4caseygirl

Hi Beesie-

Just wondering why they do not radiate everyone after a mx or bmx to kill off any rogue cancer cells?

Beesie

4caseygirl, it's the same reason why they don't recommend Tamox. to women who've had a BMX for DCIS.  The risks and side effects of the treatment are greater than the benefits from the treatment.  So you put yourself at greater health risk overall by having the treatment vs. not having it. 

If you have a lumpectomy and have a 12% recurrence risk, rads can cut that to about 6%. That 6% reduction in recurrence risk outweighs the risks of any serious side effects from radiation. (Note that the 12% is just an example - recurrence risk after a lumpectomy can range from about 3-4% to as high as 50% or more, depending on the pathology and margins and the age of the patient.)

But if you have a MX and have at most a 2% recurrence risk, rads will only be able to cut that to 1%. That 1% risk reduction is probably equal to or less than the risk of side effects from rads. So why expose yourself to a whole new set of risks, even if it's just a small risk, for the sake of a maximum 1% reduction in recurrence risk?

On the other hand, a study from a few years ago suggested that those who have positive or very narrow margins after a MX for DCIS may have a considerably higher recurrence risk than the 1% - 2% average risk that most women face.  That study put the risk at 16% for those with narrow margins after a MX. So for these women, the benefit from rads would be greater - on average rads reduces local recurrence risk by ~50% - and for this reason, more and more often these days rads is being recommended after a MX for DCIS if the margins are positive or close.  

Hope that makes sense. 

lisagwa

Thx so much. I still am wondering and am not sure if there is an answer but here it goes.... If a person with bc/ mastecomies (ok, like me) gets checkups at least once a year, it would seem that the only way to be dx as IDC would be if it was missed in the palpable checkup. is this correct or is there a diff reason why there would be a diff dx?... does this also mean that women who originally get dx other than DCIS (IDC, stage I and so on), that their bc was missed at Mammo or other testing?

4caseygirl

Hi Beesie-Thanks for the information. In the study you mention about close margins, I would asume that would be near the chest wall.  What would be an optimal margins width?

BLinthedesert

Lisa, there are some things we just don't know about the cellular make-up of cancer.  Not ALL women with IDC had DCIS first.  And not ALL women who have a diagnosis of IDC later (after a diagnosis of DCIS) are from the same cellular process of their initial DCIS.  

The "standard" ADH -> DCIS -> IDC model is NOT the only way to get breast cancer.  Some people go straight to IDC, and some go straight to DCIS and stay there (or ADH and stay there).  As you can tell from this board, breast cancer is a very hetergeneous (very variable) disease.  If you have ADH or DCIS then you are at a higher risk than the general population, because you are "breast cancer" prone ;-), but there is no way of knowing exactly why ...

SO -- the short answer is that missing DCIS from a breast exam after MX is not the ONLY way you can end up being the 1% of people who have IDC after MX for DCIS.   

Casey - yes, my RO was planning on recommending radiation regardless of whether or not I had lumpectomy or MX because of the location of my one of my foci -- luckily, my surgeon did a great job (and even though I had multiple areas of DCIS they were all in one quadrant of the breast) and was able to get decent margins with the lumpectomy.

lisagwa

Thanks again. Where do you read all your knowledgeable info? lastly, or so I think, what do you all think about having a hysterectomy since we might now be more susceptible to this combination of cancer?

BLinthedesert

I am not sure about that - unless you are BRAC1/BRAC2, I don't think most physicians are suggesting that removing your ovaries (or uterus) is warrented.  Tamoxifen is associated with higher rates of uterine cancer, so if you are post menopausal and taking it then some people are opting to having a hysterectomy (but not all, and I don't think it is part of the NCCN guidelines).  

(I do research for a living, on colon cancer, and I have some collaborators that are doing breast cancer research.  So, I am constantly inundated with data and science ;-) ).

lisagwa

BLinthedesert- are there any specific websites you would recommend for a layman like me to get reliable info? Thx.

BLinthedesert

Lisa, the BCO website has all kinds of good information - and links on the latest research.  The other site that I would recommend is the NCCN site http://www.nccn.org/patients/patient_guidelines/breast/index.html

and the American Cancer Society http://www.cancer.org/cancer/breastcancer/index

Both of these sites have links to other sites.  

lisagwa

BLinthedesert- thank u so much for the above websites. (hugs)

BLinthedesert

No problem Lisa, I hope your "new breasts" are doing well   

I hope you don't mind me asking, but, how are you doing?  Do you have shoulder and chest muscle pain?  I am asking because even though I only had a lumpectomy, my chest muscles are so very tight.  Not the "stabbing" pains I get sometimes, but so tight that I can't really raise my arm above my head, and even taking a deep breath hurts.  I can't tell if it is from the surgery (had to go down to the facia because I had a foci of dcis on the chest wall) - or from radiation.   I figured you might have even worse side effects after the surgery of MX and then implants on top of that?

Hugs back at you. 

lisagwa

BLinthedesert - I do not have any shoulder or chest muscle pain. Occasionally I get nerve pain (I think that is what it is) which lasts for a second. My chest muscle isn't tight. When I lay flat on my back and my foobs separate to each side, you can feel more of my middle chest bone. Otherwise all seems okay (knock on wood).



I would definitely discuss these problems with your doctor and maybe start a new thread to find out if others have similar issues after lumpectomy. Please let us know how you are and what you find out. (hugs)