Confused about recurrence possibility

You are assuming that regular screening will detect a recurrence in the early stages.  I had regular mammograms, sometimes as often as every 6 months, for many years. I was seen in a breast center, by a breast surgeon, and ultrasound often accompanied these mammograms.  Mammography missed my DCIS and 2cm of IDC completely.  It was seen on ultrasound, but all imaging, including MRI, missed my 6mm positive node.  None of the imaging saw the undiagnosed ADH and ALH in my non-cancer breast - that, and the two positive nodes, were surprises on post-operative pathology.  Screening techniques are not foolproof, particularly for those of us who had very dense breasts.  The failure of regular and diligent screening to find my cancer is what prompted me to go from being a lumpectomy candidate to asking for a bilateral mastectomy.  I did not have faith that a recurrence, or a new primary cancer, would be detected in the either the treated or untreated breast.

You can have a recurrence after mastectomy because it is impossible for even the most skilled surgeon to remove all of the breast tissue.  1-2% remains after mastectomy, and you can have a recurrence in the remaining tissue, the chest wall, the skin, or regionally in the nodes.  All treatment - surgery, chemo, radiation, hormonal therapy - does not guarantee that the cancer will not return, either locally as a recurrence in the breast, or distantly as a metastasis.

SpecialK, cancer can also spread through the bloodstream. I had a mastectomy with Stage 1, had no lymph node involvement and no discernible vascular involvement, but three years later, the cancer had spread to my bones. At this point, it's not in my soft tissue, as far as we know.

I think if I had to do it over again, knowing what I now know, I'd have the lumpectomy as the docs suggested. I thought the mastectomy would make it less likely that my cancer would metastasize, but the statistics don't seem to bear that out. There really seems to be no advantage with regard to a distant recurrence.

Mayanne..I understand your dilemma. Please keep in mind a few htings, I just went through this 6 weeks ago.

while it is fine to have "complete trust in your MD", blind faith is NOT ok, please research, educate yourself and advocate for yourself.

Like it or not, we are being advised based on statitistics, but we ARE people., patients. I have been an  RN for twenty years and wish I had a dollar for every patient who told me after a reoccurence that they had been more aggressive from day 1 even if it was against the surgeons wishes.

It is UNETHICAL,  according to AMA standards for a surgeon to show a strong bias while presenting the pros and cons of both OPTIONS to you. They are options because it is your decsion.

Fact: The survival rate of both mastectomy and Lumpectomy with radiation may be the same BUT it does not tell you that the RISK of reoccurrence with Lumpectomy is MUCH higher and that those patients do in fact survive- at a lower rate than mastectomy though, after then having to undergo aggressive treatment like chemo, radiaion and yes a mastecomy.

For me, preserving breast tissue for cancer to grow in, even  on my non cancer side, was a risk I was not willing to take with Grade 3 DCIS in all quads of ducts that mammo and U/S did not see because of my dense breasts. Even 6 months is time enough for DCIS to become IDC and perhaps metastisize.

My Breast Surgeon, at a HUGE National Breast Center said to me at the first appt. "you dont know how many women I try to talk out of Mastectomy" My husband and i were stunned. The call from her a week later with my pathology results- she then said "good call on your gut and going with Mastectomy, you were full of DCIS, I could not have done a lumpectomy.

So, my dear, please rememeber, the medical community is very aware and dismayed and upset at what they call te HYSTERIA of the escalating rate of Mastectomy for even Stage 0 DCIS. They are not in favor of it and feel that it is taking us backwards medically. I DISAGREE. This is your body, your choice, please be comfortable making the decision best for you and how you will feel later, sleeping better, less anxiety about re-occurence..Nothing is perfect, there are no guarantees, but I like 1-2% risk vs. 8-12% with lumpectomy and radiation quoted to me by my surgeon.

Good luck to you and many blessings and you go forward...Hindsight is 20/20

Mimi

"Fact: The survival rate of both mastectomy and Lumpectomy with radiation may be the same BUT it does not tell you that the RISK of reoccurrence with Lumpectomy is MUCH higher and that those patients do in fact survive- at a lower rate than mastectomy though, after then having to undergo aggressive treatment like chemo, radiaion and yes a mastecomy."

Mimi, I'm sorry, but I have to disagree. That is such a generalized a statement that while it may be true in many cases, it will also be completely false in many cases.

It is a fact that the survival rate of both mastectomy and lumpectomy + rads is the same. Many very large long-term studies have confirmed this.

It is also a fact that while the difference in recurrence rate between a MX and a lumpectomy might be large, it also might be small - it all depends on the specifics of the pathology, the surgical margins, etc..

As for the comments about having to undergo aggressive treatment.... if someone does have a recurrence, whether they had a lumpectomy first or a MX, the treatment might be surgery alone, or it might be something more. Each case is different.

Here are the facts:

- Some women who have a small single area of cancer come out of a lumpectomy (usually with rads but sometimes even without rads) with a very low local (in the breast area) recurrence risk. However if someone has a large area of aggressive cancer (whether invasive or DCIS) that is multi-focal, and if the surgical margins are narrow, the local recurrence risk after a lumpectomy, even with rads, might be very high.

- On the other hand, many women come out of a MX with a low local recurrence risk. However if the cancer is near the chest wall, rads may be required, and the recurrence risk, even after a MX, might be much higher (higher than it is for many women who have a lumpectomy).

What it comes down to is that every case is different and we shouldn't use generalized information to make a decision that is so dependent on the specifics of our own case.

A couple of other facts:

- For anyone who has invasive cancer, whether one has a lumpectomy or a mastectomy makes no difference when it comes to distant recurrence risk (i.e. the risk of mets).

- Separate from a recurrence, as women we all continue to face a breast cancer risk for the rest of our lives.... this would be the development of a new cancer, unrelated to the previous diagnosis. What our risk is depends on many factors, almost all personal - our family history, our own breast health history including our age at time of our first diagnosis, whether we took HRT, etc. etc.. Most women who get breast cancer one time don't ever get it again, nevertheless this risk will always remain with us whether we have a lumpectomy or a MX or a BMX. This risk will however be higher for women who have a lumpectomy or single MX vs. those who have a BMX, simply by virtue of fact that they have more breast tissue.

The last thing that I want to point out is that there is a lot more to this decision than just recurrence risk. Both options - a lumpectomy + rads and a MX - can have lingering and sometimes life long effects (lifelong particularly for a MX). No one should make this decision without fully understanding what they are getting into with the choice that they make. Once the fear of recurrence is out of your mind (and for most women it does fade considerably as time goes on), you will have to live with the physical consequences of the decision for the rest of your life.

Edited for typos only.

A huge undersold benefit of mastectomy( for most people) in my opinion is avoiding radiation. Not sure why surgeons don't point this out as a benefit. They still push for lumpectomy. Hmmmm…wonder why? I think it's seen as an 'advance' to remove less of the breast when the results are the same insofar as death from the disease. For some reason it's seen as an advance to remove less of the breast, when it's not like that with other kinds of surgery, especially on parts of the body we don't need. Seems there's lots of 'judgment' around the breast…! No one cares whether I take out my whole thyroid or just the growth on the thyroid. Surgeons don't push one way or the other, at least in my very limited experience they didn't. It was kind of up to you. Sort of like the breast thing was, only I felt TONS of judgment and opinion about that.

While breast cancer deaths maybe the same btwn lump. and mast. candidates, I think there have been studies that show that if the left side of the chest is radiated, there is a higher risk of heart issues later?

Everyone does see it differently, and it's important to remember that when we offer advice and particularly when we talk about benefits or about what might cause extra anxiety or fear.

Jessica, for me, I don't see avoiding rads as being a benefit at all. I appreciate that some women fear rads but I never did and knowing a lot more now than I did when I was diagnosed 8 years ago, I still don't fear rads. Many women get a reassurance from having rads, and keep in mind too that having a MX does not always mean that rads can be avoided. I've been here long enough to have seen many many women who've had mastectomies - some even made the choice to have a MX in order to avoid rads - and then to their shock have found out that they needed to have rads anyway. This can even happen with DCIS, if the chest wall margins are too narrow.

As for the risks associated with rads, yes, there are risks. And there are risks with having a MX. Most women do not experience any long term problems with either procedure but there are a percent who will - whether it's issues because of rads or issues because of having had a MX. One difference between the two procedures: After a lumpectomy with rads you still have a natural breast, with natural feelings and natural movement whereas all women who have a MX lose their natural breast sensation for the rest of their lives. That doesn't matter to many woman but for me this is one of the big benefits of a lumpectomy.

So, clearly what is a benefit for one person is not necessarily a benefit for someone else. I would gladly have had rads rather than have a MX. But I understand that some women feel differently.

Special K I am with you too re the imaging problems and 'no faith' after diligent screenings…

Timbuktu, I don't know those details re Elizabeth Edwards, however, it is possible that cancer was found to have spread into other areas of the breast after the lumpectomy, a new primary, or a recurrence in another part of the breast and size/location / previous radiation prevented them from doing a lumpectomy and radiating the same area again.? I don't think it has anything to do with one being better than the other, just that if you have a recurrence locally you can't , I don't' think, get radiation again-it must be a single mastectomy. This is why pretty much anyone who has a local recurrence or second primary after lumpectomy gets a single (or bi) mastectomy….And boy hindsight is 20/20 there! Definitely would have gone back in time and done it all mastectomy the first time.

Timbuktu, where did you read that Elizabeth Edwards had a mastectomy? I've never read about that. This article goes into detail about her treatment, and there is no mention of her having a MX. Elizabeth Edwards: Her Breast Cancer Experience

Jessica, I don't agree at all that there is a push for lumpectomies. I do think however that the medical community is concerned that too many women who don't have a medical need for a MX are choosing to have a MX based on fear and/or misinformation, when the evidence shows that a lumpectomy + rads is an as effective, if not more effective, treatment. That's not to say that there aren't many very good reasons why women choose to have a MX or BMX, but the key is that the decision should be made with facts, not out of fear.

Ultimately I think what's most important is that everyone make an educated decision. And if everyone is making an educated decision, then clearly they've determined that whatever they've chosen - lumpectomy or mastectomy - is what's best for them. That's all that matters. My concern, however, is that too many women make this decision without a full understanding of the implications. Many women fear rads, and those fears are openly discussed and supported on this board. The problem is that too often, those fears are exaggerated, sometimes vastly exaggerated. On the other hand, I've seen too many women chose to have mastectomies without any real understanding of what's involved and what the implications might be. And that's rarely discussed on this board, or anywhere else, for that matter.

Whatever decision anyone makes, they should go into it with full knowledge and a full understanding of the potential side effects and risks.

After DCIS diagnosis in one breast, I had 3 days to learn all I could about breast cancer before meeting with the breast surgeon. I relied on information on the MD Anderson, Mayo, and John Hopkins websites as well as a NIH algorhythm . Since lumpectomy is the usual recommended treatment and it is usually followed by radiation, I carefully read everything, pro and con. My decision was bilateral mastectomy with sentinel node biopsy. Not having to have radiation was not the only reason, but it was a big factor. I have a large aneurysm in the ascending aorta of my heart and a malfunctioning aortic valve. I will have to have open heart surgery in the next year most likely. Avoiding damage to my heart is important and I know that as hard as they try, radiologists have not perfected a way to avoid it. They've made progress but in my case, it's not enough. Even if I didn't have heart issues, I would have wanted to avoid radiation unless it was absolutely necessary. The side effects can be serious. If my cancer had been invasive, I would have had a tougher decision.

It came down to the same things many of you have already mentioned. I could not deal with worrying if the surgeon had taken a big enough margin, whether I would need a re-excision like some women do, whether I would need the mastectomy anyway as some do, and would it show up in the other breast? Would it be found early enough? I saw no point in trying to save my breasts, even the one with no cancer. They were a liability. I had no emotional attachment to them. They had nourished three kids and provided hours of entertainment in 43 years of marriage, but at nearly 65, I didn't need or want them anymore. Perhaps I'd have felt differently at a younger age.

I understand that most other women feel differently and I support their decision for lumpectomy and radiation 100%. We should ALL have the treatment we want without having people suggest we have made the "wrong" decision. Fortunately, my breast surgeon said my DCIS was an aggressive kind and he fully supported my decision. After the operation, my oncologist said I had made a good decision because pathology had found LCIS in the other breast, missed in testing because of my dense breasts. If I'd chosen a single mastectomy, I would have given the LCIS more time to potentially become invasive. My decision to have a BMX was the best one for me. I have no regrets and don't feel I should have to listen to any more people who tell me that I'm only 3 months out and will be sorry later. People have actually asked me why I didn't try harder to save my breasts. Save them for what?

We can't use the word cure. There IS currently no cure for breast cancer. We are diagnosed and get treatment, but are not "cured." There is always a chance for recurrence, albeit a small one in most cases. The best we can hope for is to be NED (no evidence of disease.) Fortunately for most of us, we will STAY NED. There are plenty of women on this forum who have been NED for 10-15+ years. But there are others that do get a recurrence. If not in the breast, the most common place for mets (breast cancer spread) is lungs, bones, liver, and skin. Pathology may show the cancer is breast cancer, not lung cancer, etc. It is treated with breast cancer drugs unless it is proved to be a new primary cancer of the lung, etc. This is why it's important to see your oncologist and get checked every 6 months or 1 year. Things change quickly in breast cancer research. Three years ago is an eternity ago! New clinical trials are leading to new treatments for breast cancer. Someday we WILL be able to say we were cured of cancer.

Having a recurrence outside of the breast has nothing to do with your lumpectomy/mastectomy choice. (Or if the study I cited is right, having a lumpectomy plus rads, may actually decrease recurrence risk more than a mastectomy without rads.)

There are many reasons why one might choose a mastectomy, as many of the ladies above have articulated, but I have to say that I was thrilled to have the lumpectomy choice, and have never regretted going that route because:

* a mastectomy is a more major surgery; with more possible complications, longer recovery time, more expense, time lost from work etc. etc. I hate doctors, hospitals, drains, surgery...anything medical, plus I had things to do and didn't want to give up that much time to 'cancer'.

* a mastecomy either means you will need to learn to live breast-free, which is a difficult adjustment for many, or you will have to undergo more hassle, expense, pain, recovery time, possible side effects etc. etc. doing of reconstruction....which does not guarantee good or lasting results....again, I hate medical stuff; and particularly after learning about all the reconstruction horror stories (even the successful ones make me feel faint); I am pretty sure I couldn't do it. Which means I would have to be flat, which would make me feel sad, or deal with a prosthesis, which would be a pain in the butt. I am glad to still have my breast, and if down the road I would have a local recurrence & have to have a mastectomy, well, I would still be glad I made my original choice because I will have had many extra years without all that hassle/pain/money/time.....

* when I was making my decision, I asked a friend who is a 35 year BC surivor and a surgical nurse. When she was diagnosed, you didn't have a choice...you had a mastectomy. Later, when it was widely available, she had reconstruction. So, she has seen BC from both sides of the operating table. When I asked for her opinion, she said (without skipping a beat), "If you have the choice of a lumpectomy, TAKE IT."

Mia... I initially had a lumpectomy also thinking my nodes were clean... But I too had a micromet (.38mm), and my MO not only wanted me to have chemo, but gave me 6 doses instead of 4. I have no regrets. I worried that if the cancer spread to the node, it could be anywhere. I handled chemo fine... lost my hair, but it all came back. No regrets at all. During the chemo, I had time to think about the MX or radiation and it was during this time I chose to have BMX.

Mia... I had 6tx of TC and have been on Tamoxifen for 2 years now. I handled it all fine. When I started TC, I had one more period and then that was it... had some hot flashes, but those have passed now. Your diagnosis sounds very similar to mine, and I think the chemo is the way to go. My MO didn't do the oncotype because he said its not for node positive women... And even though we are mildly positive, we are positive. So even though your tumor/cancer type is less likely to recur, that is completely unrelated to chemo. Chemo's job is to kill any rogue cells that may have escaped the breast... and since it did go to the node, you run that risk. For me, I didn't want to take any chances. And for you, 4tx is 3 months of chemo... Small investment of time for a future of some protection. I won't try to convince you, but chemo has nothing to do with recurrance liklihood and has everything to do with killing cells that could metastisize...

Mia - sorry you're having to join us here, but it's an incredibly supportive and informative place to be! *hug* My MO wanted me to "consider" doing 4 cycles of TC (maybe 6) because of the tumor size (> 1 cm), but my high Oncotype score nixed all that and I went on to 20 weeks of ACT. Every step of the treatment plan offers choices, some of which are harder to make than others. I admit that I was really glad my Oncotype score was so high (42) - I didn't have to think twice about my decision to move forward with chemo. I'm surprised, even with your low Oncotype score, that your MO isn't more strongly encouraging chemo; I guess I thought, like bdavis pointed out, that a positive node meant chemo was more important in treatment. I hope your Mammaprint gives you the clear-cut results you need to help you make your decision.

I tried Tamoxifen - twice - and gave it up. While I was on it, however, I was given very low dose Effexfor to counteract the hot flashes, and it worked great! It's always a helpful option.

Good luck to you during your decision-making period.