Confused, pressured, lost and not sure what to do...

Hi and welcome to BCO, we never leave any post unanswered.

To answer your question re your decision, it is a really personal one that only you, in the end, can answer.  All we can do is offer you perhaps some insight into what the effects of that decision will possible be.  First and foremost, the end process of all this is to have peace of mind and how that is achieved brings us to the question.

DCIS is as much breast cancer as any other stage and as such should never be taken lightly or discounted in any way.  I think the reason your doc has suggested the mastectomy is even though they found those two extra little spots, it is possible that there are more but are too small even for the scans to pick up and the object of the surgery is to get rid of that possibility.  Your thoughts on having lumpectomy and rads is an option for you as well but bare in mind that should your breast be so mis-shapen by that surgery you may need some reconstruction anyway and having rads (radiation) to the breast will make that a bit more difficult.

Each of us wear some scaring but I have seen some beautifully reconstructed breasts and over time the scars that seem so hideous to begin with have faded to thin white lines that are barely there and the breasts are beautiful.

I hope I have helped even just a little.

Love n hugs.  Chrissy

Jode, there's nothing like being faced with a bunch of crappy choices, is there?  

I can identify with your situation but I had the good fortune (in a manner of speaking) of having less of a real choice.  I had DCIS in what appeared on the mammo films to be two small areas. These were removed during an excisional biopsy (the original needle biopsy had only found ADH) but there were no clear margins.  Then I had an MRI which showed that my breast was full of 'stuff'. My surgeon couldn't say for sure that the stuff was more DCIS but we both guessed that it was.  So it was pretty clear that just trying to do a re-excision on the original surgery area wouldn't have resulted in clear margins.  Plus the excisional biopsy had also turned up a microinvasion of IDC, so I knew that I was dealing with DCIS that was already in the process of evolving to become invasive cancer.  I really fought the idea of having a mastectomy but in the end I realized that it was the only viable option. Because the MRI on my other breast was clear, I had a single mastectomy only.  Since I wasn't big on the idea of having a mastectomy in the first place, I wasn't about to remove a 'healthy' breast for no good reason!

I will not be one who says that a MX is wonderful and my reconstructed breast is better than the original.  Not so.  Having had a MX by necessity and not choice, I tend to be more open about some of the short-term (pain during the process, the need for revisions) and particularly long-term problems (loss of muscle strength, phantom pains) that may come with having a MX.  But then I had implant reconstruction, which is certainly not as natural as a DIEP.  So I can't speak for how you might feel after having had a DIEP. 

What I can say is what I've said to many others who've come through here, which is that I don't think that anyone who is uncertain about having a MX should have a MX, unless it is medically necessary.  If you have a lumpectomy you can always decide to have a MX later.  But if you have a MX, it's done and there is no going back.  

So.... if your new areas of DCIS are in the same quadrant as your original surgery, and if your BS believes that a lumpectomy is a viable option, then that certainly is a reasonable choice for you. Or you could choose to have the mastectomy.  Technically it is true that your survival rate will be the same with either option, but with DCIS it's actually a little more complicated than that. Pure DCIS has a 100% survival rate. However women who are initially diagnosed with DCIS tend to have a long-term survival rate of about 98% - 99%.  The 1% - 2% who succumb to breast cancer are those who have a recurrence after the initial diagnosis and the recurrence isn't found until the cancer has evolved to become invasive cancer (which happens in about 50% of recurrences)  and some invasive cancer cells have moved out of the breast before surgery removes the recurrent cancer from the breast. After a MX, the recurrence rate is 1% - 2%. After a lumpectomy, the recurrence rate can range from about 4% to as high as 40% or 50%, depending on the pathology and the margins. Radiation cuts recurrence risk by approx. 50% and Tamoxifen (for those who are ER+) cuts recurrence risk by a further 50%. I believe that the average recurrence rate after a lumpectomy (plus other treatments) for DCIS is in the range of 8% - 12%.  This overall higher recurrence rate for lumpectomies results in a slightly higher mortality rate. However because the overall survival rate for those diagnosed with DCIS is so high, the difference in survival between those who have mastectomies and those who have lumpectomies is small enough that in most studies it's not a statistically significant difference.  And that's why your surgeon is technically correct in saying that there is no difference in survival rate.  I hope that explanation makes sense and wasn't too convoluted!

Ultimately only you can know what's the best approach is for you. I appreciate that you don't want to over-treat a condition that might never be life threatening.  Some women would consider the need for rads and Tamox to be over-treatment and they'd opt for surgery alone, i.e. the mastectomy (note that Tamox. after a single MX is purely optional since it is given simply to provide protection for the remaining breast - my oncologist actually recommended against it for me). Other women would consider a MX to be over-treatment and they'd choose to have the lumpectomy with rads and Tamox.  

One thing I will say is that if you remain uncertain, you can always go with the re-excision and then take it from there.  See what the re-excision shows.... since the two new areas of DCIS appear to be so small, it's possible that there might be no more DCIS found and you could end up with very wide margins - and that could put into question the need for either rads or Tamox. That's where a second opinion from a doctor like Dr. Lagios (who strives to avoid unnecessary radiation but who will recommend it when necessary) might come into play. Or if the re-excision shows more areas of DCIS, clearly indicating a need for rads and Tamox., you could move on to a MX at that point, if you prefer that to doing the other treatments. 

Not an easy decision but you do have options, which is a good thing.  Good luck! 

I can relate to the 'shooting a hummingbird with a shotgun', I have been thinking in terms of ‘hitting a finishing nail with a sledge hammer' because some of the treatments proposed carry a significant chance of negative side effects and would likely ‘leave the wall in worse shape - the finishing nail will be well embedded but the wall may be crumbling at the site of insertion'. 

In my case I have <1cm, DCIS, Stage 0, ‘intermediate grade'.  The biopsy itself removed all the calcifications which were the initial mammogram finding pointing out the likely/possible cancer.  A thorough MRI yielded no other areas of concern in either breast.  The pathology report showed strong positivity for estrogen and progesterone receptors.  Neither  Her-1/Neu or Oncotyp were done.

I say < 1cm because my mammogram report said ‘tiny' calcifications and my pathology report said ‘tiny' focus - no sizes given.   I am very fortunate that my ‘spot' is clear of nipple, skin and chest wall.

I see lumpectomy with clear margins as a nobrainer - I should do that. 

I am being told that Radiation is ‘standard' too ‘(internal' MammoSite, external partial, or external full breast radiation).  Ignoring side effect concerns radiation is generally ‘one treatment per breast in a lifetime'.  So if I use the one treatment for this breast now and get a more serious cancer in the same breast later - but one still treatable via lumpectomy - I will have used up my radiation quota on that breast, possibly ruling out a non mastectomy treatment for this next 'possible' tumor. 

Also, this is my left breast and radiation damage to the heart is not unheard of. 

I am mid fifties, postmenopausal and have been using estrogen/progesterone HRT for more than a decade.  Clearly it is recommended that I stop HRT given my tumor cells strong Estrogen/Progesterone receptivity.  I will try to do this, but I make my living by thinking and keeping up with a lot of rapidly changing data - whenever I have tried to ease up on my HRT I have suffered significant cognitive degradation which has forced me to resume HRT - it isn't just that it is not possible for me to work it is hard for me to function through a normal day my brain powers down so much,  I have a hard time stringing a complete sentence together.  I never had a hot flash - so I am out of the mainstream as far as menopause effects are concerned. The breast surgeons I have talked to thus far even say in my case I may not be able to give up HRT. 

If I can give up HRT then Tamoxifan/Aromasin are ‘standard' treatments.  OK both are likely to reduce bone density more than a little and I have a strong family history of osteoporosis.    Tamoxifan while reducing breast cancer, encourages uterine cancer.   Again, ignoring all the other side effects - these 2 issues: bone density reduction and uterine cancer are associated with increased morbidity down the line for me.

What I don't see thus far in my brief journey into determining the appropriate treatment for me is the thoughtful balancing act of treatment/risk for the overall person's long term health and functioning weighed appropriately by medical staff primarily focused on eliminating cancer.  For me - I am fine with a reoccurrence of a ‘manageable with additional surgery' reoccurrence of cancer.  If I need a lumpectomy every few years that option beats some of the side effects of the treatment options I am learning about for STAGE 0, < 1cm, DCIS.   I am very happy that my annual mammogram has detected a highly treatable cancer BEFORE the treatment options are limited to having to go the radiation/tamoxifan type drug path.  What I am finding is though that the treatment options that are proposed to me are more appropriate for more advanced cancers.  My research has led me to some studies of OVERTREATMENT of early breast cancers.  It isn't a totally novel concept - there are doctors out there saying that early breast cancers are being over treated in some/many cases.

I am less than a month into my positive biopsy results - so I have a lot to learn before I am ready to plot my treatment path.  I do believe I should get this taken care of ASAP though so I will be reading up in this forum and elsewhere.

All my best to those struggling with plotting the best course for their treatment - it is challenging!

L2012, did you have a core needle biopsy?  If so, and if all the visible calcs were removed, then the area of DCIS might be considerably smaller than 1cm.  I agree with your assessment that the lumpectomy is a no-brainer.  After that, if in fact the final pathology shows that you had a single focus of non-high grade DCIS that was less than 1cm in size and if you have large clear margins, then the question as to whether any other treatment is necessary is a matter of opinion and risk assessment.  Once the surgery is done and you have all the information about your pathology, ask your oncologist what your recurrence risk is, assuming no additional treatment.  Then ask how much radiation alone or Tamox. alone would lower your risk.  Also ask how much your risk would be reduced if you had radiation and took Tamox.  This should tell you whether either or both of these treatments make sense for you - or not - based on your level of risk tolerance. 

As for hormone therapy, at this point only Tamoxifen is approved for DCIS patients. Tamox actually has a slight positive impact on bone density - so if you are concerned about osteoporosis, then Tamox might be a good choice for you.  As for uterine cancer, it's true that Tamox. does increase the risk and this can be a very serious side effect, however the overall risk remains very low, unless you already have other factors that increase your risk for these cancers.

Endometrial Cancer
Studies have found the risk of developing endometrial cancer to be about 2 cases per 1,000 women taking tamoxifen each year compared with 1 case per 1,000 women taking placebo. Most of the endometrial cancers that have occurred in women taking tamoxifen have been found in the early stages, and treatment has usually been effective. However, for some breast cancer patients who developed endometrial cancer while taking tamoxifen, the disease was life-threatening.

Uterine Sarcoma
Studies have found the risk of developing uterine sarcoma to be slightly higher in women taking tamoxifen compared with women taking placebo. However, it was less than 1 case per 1,000 women per year in both groups. Research to date indicates that uterine sarcoma is more likely to be diagnosed at later stages than endometrial cancer, and may therefore be harder to control and more life-threatening than endometrial cancer.

http://www.cancer.gov/cancertopics/factsheet/Therapy/tamoxifen 

I'm in the midst of this too, although a little further along.



I had excisional biopsy, lumpectomy, the re-excision. I was trying to avoid a mastectomy but unfortunately, circumstances are such that I will likely end up going that route. I had an infection, which really disfigured my breast, and radiation would make the disfigurement worse.



That said, I am not sorry I went through everything I have gone through. If I'd had a mastectomy right away, I would have always wondered whether it could have been avoided.



No matter what, my lists of pros and cons for each procedure always equaled out.



Best of luck to you. It's a hard decision, and even now on the eve of another appointment with my PS, I'm still not entirely sure what I'm going to do.

Question on the Tamoxifen and uterine cancer, I was recently told that if you are perimenopausal, it wasn't a concern...it was only after menopause that uterine cancer became a concern.  I've tried to search but it is simply staggering....anyone know of studies of uterine cancer while on Tamoxifen broken down by ages?

Jode - I have been doing a lot of research into the side effects of radiation.  My tumor is in the left breast which means the radiation is much more likely to damage my heart than were it in my right breast.   I have looked into external full and partial breast radiation and MammoSite treatment.  I am planning to travel to a breast cancer treatment facility which provides IORT to evaluate it but I haven't gotten far enough in that planning to know if I can do it 'in time' - there seems to be a lot of hurry up and wait built into 'treatment' and I do want to have my lumpectomy sooner rather than later. 

 I am APPALLED that the radiation therapies are delivered to breast cancer patients ON THEIR BACKS.

Simply having the patient FACE DOWN with gravity alone pulling the breast away from the heart, lungs and ribs would help reduce the damage done to those structures.  I am not inclined to let anyone give me radiation treatment with me on my back and the really good radiologist I met with indicated that no one ever even thought of having patients face down - it would be uncomfortable!  I am more worried about how uncomfortable breathing will be if I have rib damage - which would be lifelong rib damage, or heart damage, and I am not wild about losing 'maybe 5% of my lung capacity' due to lung tissue damage. [2012-05-20 update, after further research I found some US facilities using 'heart saving' radiology methods - including breathholding synchonized with radiation which increases lung exposure but reduces heart exposure. I have opted out of radiation use in my case so for now, for me it is a moot point]

My MRI was done face down, my stereotactic biopsy was done face down....... I can not imagine why the standard for care here is to put the breasts in the worst postition with regards to delivering radiation to parts of the body that will be damaged as a side effect of the treatment. 

The way my MRI was done my breast were pulled out from my chest wall a good bit. Having the radiation delivered with a similar setup seems a lot more reasonable than letting my breasts just huddle right on top of my torso....

I know it is a bit of a rant, sorry.  I know if the docs change how they deliver radiation then all those studies that show the effectiveness of radiation are now not quite an apple to apple comparison. 

If I have a significicant negative side effect down the line from radiation therapy it won't be the radiologist treating me  - it will be a heart, lung or bone doctor.  At the end of my 3 hour discussion with the radiologist I think he was seeing the other side of radiation treatment for someone with a very very early LEFT breast cancer in a different light.  He was really a good guy and it was more him than me that made the discussion 3 hours in length. 

Like your surgeon #1 he said if I had another tumor later down the line I would have a mastectomy.  When I said,  I understand that is the standard treatment but that does not mean that is what I will have -  He looked dumbfounded, then he thought about it - I think he thought about my current dx (maybe 4 mm tumor, dcis, stage 0)  and said - that's true in your case.  

Back to your original post, I am not being pressured into anything I am not comfortable with.  I am not letting a surgeon I don't trust completely work on my.  At this point I am only sure that I am going to have the lumpectomy - and only if I completely trust the surgeon not to do a mastectomy while I am under.  I don't have to decide on any radiation for 'lumpectomy day' unless it is the IORT.

It is confusing and frustrating but these are good problems to be having - only the ones who get REALLY EARLY diagnosis of REALLY EARLY breast cancers have the choices.  I'd rather be deciding what is best than have to have mastectomy, radiation, chemo..... due to advanced cancer.

All my best

Diagnosed in February with er/pr positive DCIS. Since it was extensive, decided to have the mastectomy. Surgery is scheduled for beginning of May. The hardest part is the waiting. Now that I am getting closer, I am focusing on the recovery period. Having DIEP flap immediately after the mastectomy. Any tips on recovering from the surgery? I know there will be drains to deal with, just wondering what else I can expect that they have no mentioned.

Madisonlisa, Finding peace after such a terrible thing does not come easy, in fact, for me I have to work on this every day. I have had a panic disorder for over 20 years now, and to hear I had  breast cancer, it *sunk* me to a new all time low.

I could not handle reconstruction, I needed the cancer out of me, finally a double mastectomy over 2 years time, and I needed to move forward. I have days where the prosthetics trigger pain, or anxiety. I am forever thankful to the women here who have helped me in so many forums and discussions.

I do take an antidepressant which began the same week as my "suspected" cancer (my diagnosis weeks) and I also have xanax to get through tests. I began a meditation class when diagnosed and I practice this the best i can every day. I make myself do something good for my self every day...

I do still at times cry to see myself in front of a mirror, i have self esteem issues, I fear I have cancer again at times, but I also feel a new pride in myself that I have dealt with something impossibly difficult and I am not allowing it to sink me.

I think talking about this with others , here, saves me and helps me find peace. I have also been told by family I should not talk about my mastectomies and cancer with others, that it is upsetting. (I travel with my job and am a working artist) but I have now found women want to hear my story, they are encouraged to see me look healthy, they are encouraged to get a mammogram or deal with their own body...I would never force a thought on anyone, but if anyone notices my rhinestone pink ribbon, we talk, it helps *me* very much.

we are all different, for me it seems vital i find support here, as often as every day or as infrequent as once a week...we are here for each other.

Jode... here is one post I read from a woman... she is asking my PS a question about her lat flap:

• I had a Mastectomy on my right side w/ an expander. 10 months later, after chemo & radiation, I had Lat Dorsi flap reconstruction with a small implant. A year and a half out, the reconstructed breast continues to spasm across my breast up into my armpit, with stinging & burning. By evening it aches terribly. I have had chronic shoulder issues which is probably a result of the muscles constantly tightening with every spasm. I wonder if removing the implant will relieve the pain - or is it the moved muscle that is having the fits? Can anything be done to give me relief? My PS said I either needed to live with it, or get the DIEP done! 

Jode, there is no right answer.  What someone else did or what someone else might do in your situation should not be a factor in your decision.  The only thing that counts is what your doctors say is feasible and what you want to do and are comfortable doing.

When you say "I know I should probably get the double mastectomy and be done with this, no radiation or tamoxifen and half the chance of another cancer; but I haven't been able to get there. I just don't know why. I'm feeling kind of like a failure over all of this." it sounds as though you believe that a BMX is the "right" answer and because that's not what you want, you are failing at this BC thing.  NOTHING COULD BE FURTHER FROM THE TRUTH. 

The truth is that BC stinks and it presents us with a bunch of crappy options.  The fact that you are having trouble choosing between Crappy Option A and Crappy Option B is completely understandable.  The fact that you are not there on losing one or both breasts (if it's not necessary from a medical standpoint) is also completely understandable. None of that makes you a failure - it's just makes you normal and human.   

You've had several doctors tell you that a lumpectomy is a viable option in your case.  So if a lumpectomy is what you feel more comfortable doing, then for you that's the right decision.  As for concerns about how your breast will look after surgery, you have a couple of options.  You can go with TDAP at the time of surgery. It's true that some women have had problems with lat flap surgery, but many are very happy with the results. Do your research to make sure you understand the procedure and the risks but don't make your decision based on what happened to one or a few other women. Everybody's experience with surgery and reconstruction is different so what happened to someone else - either good or bad - is not an indicator of what your experience will be. The simple fact is that no one can predict what your experience will be. Another simple fact is that every surgery and every type of reconstruction comes with risks and possible long term side effects; the TDAP is no exception but it's also not unusual in this regard.  Another option is that you could have the lumpectomy surgery, and assuming clear margins, then have radiation. Once that's all done, you can decide based on how your breast looks whether or not you feel the need to have any type of reconstruction. There have been a number of women on this site who have had reconstruction months or years after having a lumpectomy.  So that's another possibility that you might want to discuss with your doctors.

Breast cancer is about as personal a disease as there is; it affects the way that we think about ourselves and our bodies and our relationships. No one but you can know what the right decision is for you. You are not a failure for not feeling comfortable taking the same path as someone else or for not instinctively knowing what you should do or for not going all out and doing the most possible now. This is a difficult, life-altering decision. Make the decision that you are most comfortable living with, whatever that decision might be.  

I totally understand how you feel, I too had the same decision you are facing. I researched until I had peace with my decision. I feel lucky that I was diagnosed early enough to have time to research. I had a lumpectomy first but margins were not clear, I had a choice of another lumpectomy to try to get clear margins or mastectomy. In the end I chose BMX with immediate recon and am 4 months post op. I am happy with my choice so far no regrets. For me, I just couldn't see having surgery after surgery until they got it all. I couldnt see having rads every day for 6 weeks and taking tamoxifen for 5 years. There are MANY side effects to Tamoxifen and the benefits are negligible, in my opinion especially for post menopausal women, it is absolutely not a 50% reduction in recurrence that has been stated by many. It is maybe a 1% -4% benefit. You really have to learn to read research reports to understand the exact benefit it may have for your personal diagnosis . There are also many side effects to rads and I too had cancer in my left breast thus the heart damage risk possibility. I too do not want to give up my HRT for many of the reasons you listed. Finally I wanted the least chance of recurrence and BMX gave me that. I originally wanted DIEP but turned out I wasn't a candidate. I had direct to implant recon with saline and my breasts look better now then before. Good Luck with your decision. Whatever you decide you will beat this and in a year or so it will all be a distant memory . Hugs Karen