Decisions: Rads/Tamox or Single vs. Double Mast...

Mom_To_Three

I'm new to this board. I'm 40 years old and married with 3 children. I'm in pretty good shape, don't drink hardly ever, and brest fed all three kids. (Note the anger) After weeks of mammos, ultrasounds, and biopsies, I was diagnosed with Stage 0 DCIS. At first, I had atypical cells in two areas and after surgical biopsies of both areas,I had a 6mm and a 3mm area in one area of my ducts. I had clear margins. Since my surgicial biopsy detected these, I technically have had a lumpectomy.

My MO actually told me I'm technically cured at this time and was only going to discuss radiation and tamoxifin with me. Prior to meeting with him this week, I was pretty convinced I wanted a mastectomy, waivering between a single vs. a double... He actually used the word "overkill" when I mentioned my feelings. I do like him and trust him, though. He acknowledged that he was making it harder for me.

Do I want to have a major body-altering surgery? NO. Do I want to worry about breast cancer again? NO. Am I afraid of the side effects of radiation and Tamoxifin? YES.

So, I need advice. My husband is leaning toward the rads/tamox because it is the advice of the Dr and not because he cares what a mastectomy would do to my body. My 12-year-old son was begging me not to die and cut them off. I am totally unsure of what to do.  Do I go against the MO's advice? I meet with my BS next week. Hopefully she can help me.

Add to that my personal experience with a dear friend. She went through a lump, rads, and Tamox 12 years ago. This past year she was diagnosed with cancer in the other breast and had to go through double mast with chemo because they found an area not previously detected, and it had spread to one of her lymph nodes. How did they not catch it when she was ultra proactive? Scary.

 Thanks in advance for reading. Is it normal to not want to deal with it and hope it all just goes away? I don't have time for cancer.

SJW1

Yes, it is normal to not want to deal with a diagnosis of DCIS and hope that it all goes away. When I was diagnosed with DCIS in 2007, I went into denial big time.

If your DCIS was not high grade, you may also have the option of omitting radiation and tamoxifen.  After my lumpectomy, I consulted with Dr. Michael Lagios, a world-renowned DCIS expert and pathologist, who has a consulting service that anyone can use. He used the Van Nuys Prognostic Index, to calculate my risk of recurrence without radiation or tamoxifen as only 4 percent.

Lumpectomy only is another standard of care option for some patients with small, low or intermediate grade DCIS, if they have good margins. Because I had such low risk, it made more sense for me to save radiation to use for any invasive cancer that might show up later, since it can only be used once in the same area.

What you really need to know is what your risk of recurrence is now. Once you know that, you can decide if you can live with that or if you need to seek more treatment. Since DCIS is non-invasive, you can take your time deciding...months if you like.

Please feel free to PM me if you have any questions I can help you with.

Wishing you all the best, no matter what you decide.

Sandie

Mom_To_Three

Thanks, Sandie!

Mine was a Grade 1. I also had an MRI post surgery, and my MO said there were 2 areas of enhancement besides the two areas biopsied. Confusing. He didn't give much credence to MRI's. I really need to run that by my BS this week.

This is my first time on any discussion site, and it is sooooo helpful and informational, but it has also put the fear of God in me about some things.

So just to clarifiy, you had a lumpectomy and opted to not do radiation or tamox, and you are OK with that decision at this time?

Thanks again!

KellieDenise66

Hi mom to three,



Oh my goodness I'm feeling your pain! I was diagnosed 7 1/2 wks ago with low grade DCIS. I have quite a complex health history and have decided to go forth with a nipple sparing bilateral mastectomy. Actually this coming Monday. : ( This decision however was torturous. The process so frustrating, and I honestly lost it on several occasions. What threw me for a loop was the difference of opinions among the medical community! I wasn't prepared for that in the least. So many shades of gray, and no ONE right answer!



I'd like to share with you the same thoughts other very kind and wise women on this sight shared with me.



First thing first- do not let anyone rush you into any decisions! Take the time you need to make the best choices that work for YOU, your body, and your spirit.



I saw several breast surgeons, and plastics surgeons, and one oncologist. Got second, third, and fourth opinions. Scheduled surgery, cancelled surgery, just didn't have the peace of mind I needed to move forward. Went back to my GP, and OB doctor to just run my thoughts by them. I felt like a crazy woman for sure! (btw a little Ativan at night helps with the nerves.) I thought that once I'd decided on a BMX I'd have relief, but then started the search for the right surgical team. That was agonizing. My husband helped me put together a spreadsheet to keep track of the whole process. I gave a point to all the things I placed the highest value on. Prayers, prayers and more prayers. Still felt lost, then went to consult one last breast surgeon, and I knew pretty quickly he was the one. slept like a baby that night for the first time in weeks.



Sorry to ramble, just want you to know that I understand how scary this process is. Keep pushing until you get the answers you need to make the best decision for YOU! Wishing you great peace of mind throughout your journey.



Big hugs,

Kellie

Mom_To_Three

Wow, Kellie!

I feel like we are kindred spirits. I hope to feel that sense of peace with whichever decision I make. I really don't have a complicated history - my mom & older sisters are OK so far. I have been thinking about contacting my GP just to talk things over, and because of your advice, I certainly will. The weird thing is that the entire world just keeps going on around you, and you are expected to function just like nothing is happening. Sometimes it is good to not have to think about this, but then it hits you like a kick in the stomach. I also meet with my BS (whom I love) this Wednesday, and I hope she can help guide me even more.

Thanks so much & good luck & prayers to you!

Mom_To_Three

howhm02l

I just had bilateral mastectomy and DIEP reconstruction. My final surgical pathology showed pure DCIS, low to intermediate grade with greatest measurement of 9.2 cm. mine was initially identified as areas of enhancement on MRI. I had a clear mammo just 9 months before the MRI, which was routine screening for my family history.



I will not need any further treatment, no rads, no hormonal treatment. I cannot tell you what a feeling of relief I have. The recovery has been rough, but I know with BMX that I have minimal risk of recurrence.



I should mention that I am BRCA 2+, which impacted my decision, but I had decided on the bilateral even before receiving BRCA results. My mother was 38 when she died from BC, and I was not planning to take any chances.



I am 41 and have 2 small children so my ultimate goal was to be here as long as possible!

BLinthedesert

I can totally understand your feelings of wanting a BMX to "get it over with".  Personally, I was adverse to having an invasive surgery unless I absolutely had to ... and I did not. However, the decision is a personal one, and there is no right or wrong, just what is right for each of us.  You have a RIGHT to make your own decision - based on what is going to make you feel more at peace.  And, you need to take the time you need to make sure you make the decision that is best for you.  Reconstruction is not an easy road, but many many women on this site have had good results with few side effects.  I had radiation and it was not bad, I pretty much lived my life as usual through it all and feel pretty healed up 2 months out.  I feel good about my future and am confident that I won't regret my decision - I have a recurrence risk that I can live with, with excellent survival outlook, and don't plan on losing any (more) sleep over it ... That peace is all any of us can hope for.  

 Good luck to you 

Mom_To_Three

Yes, those areas of enhancement on my MRI are weighing heavily on my mind... I pray every night for some guidance and peace of mind.

Thanks & prayers to all who have responded! I value your responses, information, and advice. More is always welcome!

Jennt28

I started a thread here called - "Someone remind me - why keep the breast" after I had a lumpectomy and was headed for radiotherapy. There are some good replies on there if you want to find it and read them.



Not long after that I quit rads - yup, had started and just couldn't keep going with them as I realised that the risks from rads far outweighed the benefits for ME.



I'm now due for my bilateral mastectomy with free TRAM reconstruction later this week and now feel like I am back on the right "train" in terms of treatments.



So, it's never too late to change your mind...



Regards Jenn

Beesie

Mom_To_Three,

What follows is a list of considerations that I put together a while ago for someone who was making the surgical choice between a lumpectomy, mastectomy and bilateral mastectomy.  I've posted this quite a few times now and have continued to refine it and add to it, thanks to great input from many others.  Some women have gone through the list and decided to have a lumpectomy, others have chosen a single mastectomy and others have opted for a bilateral mastectomy. So the purpose is simply to help women figure out what's right for them - both in the short term but more importantly, over the long term. 

• Do you want to avoid radiation? If your DCIS isn't near the chest wall, then you will be able to avoid radiation if you have a mastectomy. This is a big selling point for many women who choose to have mastectomies. However you should be aware that it's possible that radiation might be recommended after a mastectomy, if some DCIS is found near the chest wall. On the other hand, for women who have just a small area of DCIS and good surgical margins, it may be possible to pass on radiation, with very little risk, even after having just a lumpectomy. Mom_To_Three, it sounds as though your situation is closer to the second one I mentioned - a small area of low grade DCIS.  So as Sandie suggested, you may want to get more information about what your recurrence risk would be with a lumpectomy alone, without rads.  It might be low enough that you are comfortable skipping rads.

• Do you want to avoid Tamoxifen? For those who are ER positive who have DCIS, this may be possible if you have a mastectomy and particularly if you have a bilateral mastectomy. Tamoxifen provides 3 benefits: 1) It reduces the risk of local recurrence; 2) it reduces the risk of the development of a new breast cancer in either breast; and 3) it reduces the risk of a distant recurrence. For most women, a mastectomy will reduce the local recurrence risk to a low enough level that the benefit from Tamox will be minimal. For most women, a bilateral mastectomy will reduce the second risk to a low enough level that the benefit from Tamox will be minimal. The third benefit, protection against a distant recurrence (i.e. mets), isn't a factor for women who have DCIS, since by definition DCIS cannot move beyond the breast.  However for those who have invasive cancer, this is a crucial benefit and is not affected at all by the type of surgery. So for women who have an invasive tumor that is ER+, usually Tamoxifen (or an AI) will be recommended whether they have a lumpectomy, mastectomy or a BMX. However if you have DCIS (and therefore face virtually no risk of mets) or a very small non-aggressive invasive tumor (and therefore face only a very small risk of mets), it may be possible to pass on Tamox with little change in your long-term prognosis.  It's important to note that here again, as with rads, if the recurrence risk is low after a lumpectomy alone (i.e. a small lower grade tumor with good margins), it may be possible to pass on Tamoxifen, with little added risk, after just a lumpectomy.

• Does the length of the surgery and the length of the recovery period matter to you? For most women, a lumpectomy is a relatively easy surgery and recovery. After a lumpectomy, radiation, if necessary, is usually given for 6 weeks. A mastectomy is a longer, more complex surgery and the recovery period is longer. How do you feel about going through a longer surgery and a longer, more restricted recovery period?

• If you have a mastectomy, do you plan to have reconstruction? If so, be aware that reconstruction, even "immediate" reconstruction, is usually a long process - many months - and most often requires more than one surgery. Some women have little discomfort during the reconstruction process but other women find the process to be very difficult - there is no way to know until you are going through it. Are you prepared for this?

• How will you deal with possible complications with reconstruction? Some lucky women breeze through reconstruction but unfortunately, many have complications. These may be short-term and/or fixable or they may be long-term and difficult to fix. Common problems include ripples and indentations and unevenness. You may have lingering side effects (muscle pain, spasms, itching, etc.) on one side or both. If you don't end up with symmetry (symmetry is not a sure thing by any means, even if you have a bilateral mastectomy with reconstruction done on both sides at the same time), will you regret the decision to remove your breasts or your healthy breast? Are you prepared for the possibility of revision surgery, a surprisingly common occurance?

• How you do feel about your body image and how will this be affected by a mastectomy? A reconstructed breast is not the same as a real breast. Some women love their reconstructed breasts while some women hate them.  Most probably fall in-between. Reconstructed breasts usually looks fine in clothing but may not appear natural when naked. They may not feel natural or move naturally, particularly if you have implant reconstruction.  If you do choose to have a mastectomy, one option that will help you get a more natural appearance is a nipple sparing mastectomy (NSM). Not all breast surgeons are trained to do NSMs so your surgeon might not present this option to you. Ask your surgeon about it if you are interested and if he/she doesn't do nipple sparing mastectomies, it may be worth the effort to find a surgeon who does do NSMs in order to see if this option is available for you (your DCIS can't be right up near the nipple).

• How do you feel about losing the natural feeling in your breast and your nipple? Are your nipples important to you sexually? A mastectomy will change your body for the rest of your life and you have to be prepared for that. Keep in mind as well that even if you have a nipple sparing mastectomy, except in rare cases (and except with a new untested reconstruction procedure) the most feeling that can be retained in your nipples is about 20% - the nerves that affect 80% of nipple sensation are by necessity cut during the surgery and cannot be reconnected. Any breast/nipple feeling you regain will be surface feeling only (or phantom sensations, which are actually quite common and feel very real); there will be no feeling inside your breast, instead your breast will feel numb. For some, loss of breast/nipple sensation is a small price to pay; for others, it has a huge impact on their lives.

• How will you deal emotionally with the loss of your breast(s)? Some women are glad that their breast(s) is gone because it was the source of the cancer, but others become angry that cancer forced them to lose their breast(s). How do you think you will feel? Don't just consider how you feel now, as you are facing the breast cancer diagnosis, but try to think about how you will feel in a year and in a few years, once this diagnosis, and the fear, is well behind you. (Yes, the fear will fade with time.) Keep in mind as well that most women are pleased with their decision to have a mastectomy or bilateral when it's first done - they are relieved that the cancer is gone and the surgery is over and in most cases it wasn't nearly as bad as they anticipated. For women who are affected by the loss of their breasts, the real impact usually doesn't hit until many months or often, not until a years later. That's why trying to think ahead to a time when this diagnosis is long behind you is really important.

• Will removal of your breast(s) help you move on from having had cancer or will it hamper your ability to move on? Will you feel that the cancer is gone because your breast(s) is gone? Or will the loss of your breast(s) be a constant reminder that you had breast cancer?

• Appearance issues aside, before making this decision you should find out what your doctors estimate your recurrence risk will be if you have a lumpectomy with or without rads and Tamoxifen. Is this risk level one that you can live with or one that scares you?  If the risk level is high enough that it will scares you, then having a mastectomy might be a better option for you; many women get peace of mind by having a mastectomy.  Be aware however that while a mastectomy will likely reduce your local (in the breast area) recurrence risk, a recurrence or the development of a new BC is still possible after a mastectomy.  A mastectomy is not a guarantee that you won't have to deal with a recurrence.  It can still happen.

• Do you know your risk to get BC in your other (the non-cancer) breast? Is this a risk level that scares you? Or is this a risk level that you can live with? Keep in mind that DCIS cannot recur in the contralateral breast so your current diagnosis doesn't impact your other breast. However, anyone who's been diagnosed with BC one time is at higher risk to be diagnosed again and this may be compounded if you have other risk factors. Find out your risk level from your oncologist. When you talk to him or her, determine if BRCA genetic testing might be appropriate for you based on your family history of cancer and/or your age and/or your ethnicity (those of Ashkenazi Jewish descent are at higher risk). Those who are BRCA positive are very high risk to get BC and for many women, a positive BRCA test result is a compelling reason to have a bilateral mastectomy. On the other hand, for many women a negative BRCA test result helps with the decision to have a lumpectomy or single mastectomy rather than a bilateral. Talk to your oncologist. Don't assume that you know what your risk is; you may be surprised to find that it's higher than you think, or lower than you think (my risk was much less than I would ever have thought).  And know too that a masectomy is not a guarantee against the development of new breast cancer in the future.  The risk is low, but it can happen. This board unfortunately is full of examples of this.

• How will you feel if you have a lumpectomy and at some point in the future (maybe in 2 years or maybe in 30 years) you get BC again, either a recurrence in the same breast or a new BC in either breast? Will you regret your decision and wish that you'd had a bilateral mastectomy? Or will you be grateful for the extra time that you had with your breasts, knowing that you made the best decision at the time with the information that you had?

• How will you feel if you have a bilateral mastectomy and no cancer or high risk conditions are found in the other breast? Will you question (either immediately or years in the future) why you made the decision to have the bilateral? Or will you be satisfied that you made the best decision with the information you had?

.

I hope that this list is helpful. The thing to remember is that everyone's experience with surgery is different, everyone's pro vs. con list is different and everyone's emotions are different. Additionally, there is so much in this situation that you can't control..... how you feel emotionally about the loss of your breast or breasts.....   whether you have pain from your mastectomy or reconstruction or not...  whether the fears you have now, just after you've been diagnosed, will still be as strong in 6 months or 2 years..., etc..  So don't make your decision based on what someone else did or the experience that someone else had or how someone else felt.  Make the decision based on knowing yourself.  Do what's best for you.

I'm going to add one personal comment now. I had a MX, not because I wanted to but because I had too much DCIS in a small breast - a MX was my only option.  I had a single MX with implant reconstruction. I'm almost 7 years out and I still have horrible phantom itching.  I still get muscle aches when I lift something heavy.  Every day when I look in the mirror and wash in the shower, I know that I had breast cancer. Whenever I get intimate with my husband, I know that I had breast cancer. A MX truly does affect you for the rest of your life. The attitude that I've seen in many posts recently in this forum is that a MX or BMX is the solution to all the problems - you can avoid rads, you can avoid Tamoxifen, you can get your recurrence and new BC risk to the lowest possible level. All likely true. And all very important. But what is also true is that a MX or BMX opens the door to a whole new set of possible problems and concerns, and the changes to your body impact the rest of your life.  Anyone making this decision needs to understand this and needs to consider the pros and the cons of the decision. It doesn't mean that a MX or BMX isn't right for many women - but I don't want anyone to be surprised after the fact about what it's really like. I don't normally add my personal comments but too many of the recent posts about BMXs have only talked about the benefits and not the risks and downsides.  That's simply not fair to anyone who has to make this decision. 

JamieB86

I have to agree with Beesie. Some postings seem rather cavalier about BMX. I'm glad those who had them are doing so well, but I think caution is in order. 

I ended up not having a choice about a UMX.  I am 6 weeks out from my final exchange, and while my PS did a fantastic job, it's just not the same and never will be.  I'm glad I still have my one natural breast, however, even though dressed no one would ever know, in private, I know.  I recently have found myself resenting women on TV and in catalogs for their lovely breasts. There is no one right choice for everyone, but please take your time and consider all of the options.  Some decisions cannot be undone. 

Mom_To_Three

Beesie and Jamie,

Wow, I am loving all of the helpful comments. I'm currently printing off everything I find helpful all over this website and highlighting the questions and thought provoking points because I want to be prepared when I meet with my BS on Wednesday.

I'm still waiting for the feeling of a "right" decision. I really feel as though if I can get through the surgery and recovery, I would be OK with the outcome because I would be as worry-free as possible. But, then I start to second guess myself and think I am overreacting because a double mast would go against my MO's advice... Plus, I'm 40... the odds of getting BC again increase with age, and what are the long-term effects of radiation? Tamoxifen sounds like a real treat, too. Not. As you can tell, my mind is racing.

Thanks so much! You ladies are so positive and true inspirations!

Mom_To_Three

Oh, and Jenn,

Thanks so much to your sharing of your personal story, too! I'm in awe of your strength to change your mind and go with your gut. Best of luck to you and many prayers as well!

You ladies ROCK!

JamieB86

Mom to three- - I have been on Tamoxifen since May 1 with a short break for exchange surgery and I have been fine. A few "warmings" can't even really call them hot flashes.  I know its scary, but not everyone has all those bad reactions. People who have troubles post mainly. Keep that in mind. You don't have your DX in your post, so I'm not sure all that you're dealing with grade wise. That plays a huge role in what choices you may feel comfortable with. Continue to educate yourself and ask questions.  The answer will come.

Mom_To_Three

Jamie, 

That is a good point that mostly problems are posted. I am actually very "lucky" in terms of diagnosis. DCIS Grade 1 that were 6 mm & 3 mm both in same area with clear margins. That is what makes it hard, in a way, because it is early and noninvasive, I should go with my MO's advice of rads/tamox., but I'm afraid of side effects & more BC in the future due to my age of 40.

Ugh. Back to the real wold tomorrow but at least less time to think. Thanks again!

mishka

Hi mom to three, my MRI sowed a big area of enhancement and thebiopsy came back cancer free. The enhanced area may be from the hematoma I had after my lumpectomy .

JamieB86

Did you have the Oncotype for DCIS? It's a relatively new test but it might help you make a decision.  Not all insurances cover it, but the company will work with you price wise.  They accepted what my co-pay would have been had my insurance covered it.  There is also mammosite radiation, which is a partial breast radiation.  Ask your BS about that too.

I completely understand your fear. I was 43 with no family history and completely terrified by rads.  Since my DCIS was so wide spread, I ended up with a UMX. When the time came to start the tamoxifen, I waited 3 months to fill my script. 

There is also a doctor who specializes in 2nd opinions for DCIS. He name is on these boards somewhere. Infobabe used him recently. You could PM her to get his name. I know she decided against further treatment base on his recommendations.

Too much to take in sometimes.  I'm sorry you have to go through all of this.

Infobabe

Here is Dr. Lagious' web site.  I have used his service the same as Sandie who posted above.  I just had my first post treatment mammogram and all is well.

 

I will also send you the Van Nyes test so you can have some idea for yourself.  There is also cancermath.net you can check out.

 

http://www.breastcancerconsultdr.com/index.html

 

You certainly have the lowest form of bc but you are also very young.  Best wishes to you on this journey none of us want to be on.  You may have 50 or more years of life ahead of you so you want to get this right.  

 

I am sorry that your doctor started messing with your mind suggesting rads when you were ready for the MX.  It is a well known fact that us DCIS patients have the hardest time making a decision on treatment.

Infobabe

http://dciswithoutrads.com/van-nuys-prognostic-index-2/

JamieB86

Thanks Infobabe - missed Sandie's post

Beesie

Infobabe, I wouldn't say that the doctor was messing with Mom_To_Three's head when he mentioned rads.   What the doctor was doing was discussing standard-of-care treatment for the type of diagnosis that Mom_To_Three has.  That's his job. 

A lumpectomy followed by rads, and then sometimes followed by Tamox., is the standard-of-care for those who have a small area of ER+ DCIS. What's important to understand is that the standard-of-care treatment option is just the starting point when deciding on what to do. Once the standard-of-care treatment option is tabled, then other options can be discussed.  For women who have a low risk diagnosis, i.e., small areas of low grade DCIS, more and more often women are choosing to pass on some of the treatment - skipping either rads and/or Tamoxifen.  And then, on the other side, some women choose to exceed the treatment recommendations, choosing to have a MX or a BMX.

Standard-of-care treatments are established based on an assessment of the benefit vs. risk of each treatment. The idea is that the benefit of getting the treatment should outweigh the risks of having that treatment. Less treatment results in greater risk from the disease; more treatment results in greater risk from the treatment. Therefore anyone who undertreats vs. standard-of-care, passing on rads after a lumpectomy, for example, should understand that she will be exposing herself to a greater risk of recurrence than if she had rads. Anyone who overtreats vs. standard-of-care, having a MX with SNB or BMX instead of a lumpectomy, for example, should understand that she will be exposing herself to a greater risk of treatment related complications and side effects.

The most important thing to understand is that for each patient, the benefits and the risks of every treatment are different.  This is why standard-of-care provides a good starting point for the treatment discussion but standard-of-care isn't necessarily the best decision for every woman.  For example, as a general rule, rads cuts recurrence risk by ~50%. I believe that the average woman with DCIS comes out of a lumpectomy with approx. a 12% recurrence risk; having rads will cut this risk to about 6%. However someone who has grade 3 DCIS and narrow margins may have a 30% recurrence risk after a lumpectomy; in this case, rads will be able to cut the risk to 15%. So the benefit of rads for this individual is much greater. Then there is someone who has a small grade 1 DCIS diagnosis who might have only a 5% recurrence risk after a lumpectomy alone; here the benefit from rads will be smaller, cutting recurrence risk to 2.5%.  

Similarly, the risks of each treatment are different for each individual, based on her age, her health background and her family health background.  For example, whereas the risk of serious long-term side effects from rads is relatively low (best I can find, it's in the range of 1% - 3% combined for all types of risks), this risk would be higher for someone who is in poor health or who has a heart condition (left side radiation) and the risk would be lower for someone who is young and in good health.  

No patient is obligated to do what her doctor recommends. Most doctors recommend standard-of-care treatment; they recommend what they consider to be "medically necessary" and the best option in terms of an assessment of benefit vs. risk.  That's the medical side of things.  The patient's decision often includes more than just medical considerations.  When dealing with breast cancer, there are emotional and physical and body-image considerations. There are our fears, which are very individual and may be rational or irrational but in either case, they are there influencing the decision. There's the question of how we deal with risk. Some women are willing to live with a slightly higher recurrence risk, rather have subject their bodies to harsher and/or more invasive treatments. Other women will opt for a harsher or more difficult treatment in order to get a lower recurrence risk.  In both cases the benefit vs. risk equation might not be logical from a medical standpoint, but it still could be the "right" decision for that woman. 

All that to say that the doctor was just doing his job, recommending the medically appropriate treatment.  Now, with that information in hand, Mom_To_Three gets to decide what she wants to do.  

Mom_To_Three

Wow, you ladies never cease to amaze me with your guidance and knowledge. The websites posted were very helpful, positive, and thought-provoking. I had never seen the Van Nuys Prognostic Index. I will surely take it with me to my appointment this week. I fall around a 6... right on the border between radiation and no radiation...

Also, Beesie, you seem to be a very wise soul. Your words are comforting and jam-packed not only with thoughtful information but with empathy weaved in as well.

Last night I was totally leaning toward BMX but tonight I'm waivering again...

One quick question, Beesie, you mentioned that the risk is lower for young, healthy people like me rather than someone less healthy and perhaps older? I was thinking the opposite because of my age (40). I'm worried about the long term side-effects, like 20-30 years down the road (hoping I get to live a much LONGER life). So, long term effects aren't as dangerous? Do I have little to worry about in that area? That might change my thoughts...

Sorry, so many questions, I know. Thanks so much!

A big shout out to the wonderful Kellie for well wishes for a safe, successful surgery and recovery!

Jennt28

Long term side effects for secondary malignancies after radiation are very real.



It turns out that my BC was likely caused by excess radiation (multiple diagnostic x-rays in adolescence) which is why my docs are now on board with me having the BMX since we have identified I am at high risk still in both breasts (as well as for thyroid cancer...).



Sorry, since we all realised this I just hate seeing those effects minimised to indicate it would never happen. Most likely it wouldn't but you could end up being the unlucky one like me and you need to go into it knowing that and accepting the risk.



I think those long term SEs are totally brushed over by many many doctors...



Jenn

ballet12

Thank you Beesie and all of the rest of you, for providing such helpful information and reassurance.  I, too, and making these decisions now.  I have high grade DCIS (with necrosis).  The actual "amount" is not clear because of my diagnostic history.  On stereotaxic biopsy, I was diagnosed with atypical ductal hyperplasia.  On a surgical excision, DCIS was diagnosed (and reconfirmed), and the pathological area goes to the margins.  The area is somewhere between 3 to 4 cm.  I also have those unclear areas of enhancement on MRI, so there may be more. 

Anyway, I am actually still seriously contemplating lumpectomy, although the cosmetic result may not be great (if they can get clear margins).  So, I'm someone who might want to take more risk, to try to save the (small, I might add) breast. As far as mastectomy, I am not a fan of the implants, but don't have enough tissue to do DIEP flaps, etc.  So, I'm going to try one attempt at lumpectomy.  Probably will end up in the UMX camp.  Still awaiting BRCA results, which could influence my decision.

The decision is so hard, because as Beesie states, there can be issues with any one of the options.  All you have to do is read the posts throughout BCO to get a feel for this.

Beesie

Mom_To_Three,

Your question is a great one.  Unfortunately there isn't a simple answer.

I've dug around on this topic a lot, trying to find info about the long term risks from rads. The risks are real - but the question is, how many women are actually affected?  While the information is out there, it's available in dribs and drabs and for each different side effect, the data is positioned differently.  What I have been able to determine is that being relatively young at time of treatment with rads can be both a benefit and a risk. It all depends on which side effect you are looking at. 

For example, one data point I found was that ~1% of women who have rads for BC suffer long term heart problems as a result of radiation (left side rads only). But those who do are more likely to have had heart problems to begin with. So the risk is lower for those who start off healthy.  The risk of lung problems is even lower; from what I've read it appears that pretty much the only women at risk are those who smoke and/or have previous lung problems.  So for these side effects, being young and healthy is a benefit.

The risk of developing another breast cancer from rads is hard to get a handle on - I recall that there was a recent study on this but I can't find it.  The important thing to understand about BC risk from rads however is that the 50% reduction in risk that is conferred by radiation already incorporates any new BCs that might develop as a result of the rads. So the 50% reduction is the 'net' result.

As for the risk of other cancers, here is a link to one study that talks about the risks from radiation:  Proportion of second cancers attributable to radiotherapy treatment in adults

This study wasn't specific to breast cancer but did include breast cancer patients among the almost 650,000 people studied.  What they found was that over 30 years, 9% of these cancer patients developed a second cancer.  Of those who did, 8% of the cancers were judged to have been caused by the radiation therapy. So that's less than 1% overall (8% of 9%).  Digging into the data, it turns out that of the breast cancer patients, 8.3% developed a second cancer, of which 5% where judged to be attributable to the radiation therapy.  So that's less than 1/2 a percent.  More of these radiation-induced cancers did develop later (after 15 years+); this means that because you are 40 now and hopefully will be around for another 50 years or more, if you are to develop another cancer from rads, you are likely to be alive to see this cancer develop. Someone who is 70 now is less likely to live to see the development of a secondary cancer.  But still, even being young, the odds that it will happen are very very low.  

The bigger question for you may be whether you actually need rads.  Do you know what the margins were after your surgery?  One option to consider is a re-excision, i.e. another lumpectomy, in order to increase the size of the margins.  With a small grade 1 tumor and 1cm + margins, your recurrence risk with surgery alone is likely to be 5% or less, and that would put into question the need for radiation. Something else to think about!  

Beesie

Jenn, I just saw your post.  In digging around on this topic, I found numerous articles that suggest that the development of BC after childhood radiation exposure is a very real concern. But the articles also said that the risk of a radiation-induced cancer drops significantly if one's exposure to rads happens as an adult, and drops even more if the exposure doesn't occur until you are 40 or older. 

I understand completely why you have a concern about rads, and I understand completely why you would opt for a BMX.  But your situation, having had exposure to rads as an adolescent, is not the same as someone who gets rads as an adult.  You are of course right that no one should ever suggest, even to an adult who will be getting rads, that a secondary malignancy will never happen.  It can happen.  It's a very real risk. But I suspect that many of the women on this site who fear radiation think that the risk is much much higher than it actually is - I've seen numbers like 10% or even 30% thrown out there. Therefore I believe it's important to try to quantify the risk so that those making this decision have a realistic understanding of what the risk really is.      

Infobabe

Beesie 

Risk for rads is always hard to judge because we have to wait for 15 years to know.  

Currently the information on rads SEs is for treatment given 15 years ago but treatment has changed since then and we won't know the current side effects for another 15 years and I cannot wait that long.

If you google long term side effects for radiation therapy for breast cancer, you get quite a laundry list of SEs. 

My doctor said rads always hit the lung, the question is how bad?  I had to sign an informed consent for that.

Just my idea, but do any of you remember how they used to truck around those old leaky x-ray machines screening for TB.  We would be hauled out of work to go for a picture.  I have wondered if this is a cause of present BC cases. 

Mom_To_Three

Beesie, to answer your question... in my original needle biopsy, I had two areas (one on each side of my left breast) show atypical hyperplasia. So, then I had a surgical biopsy. One still only showed the atypical hyperplasia, but the other one showed my ductal carcinoma. I had two carcinomas (a 6mm and a 3mm) found. Does that mean they were in the same duct or same area but separate ducts? The smallest clear margin was 5 mm. I also had some calcifications around the breast. So, do I feel the need to fry those little troublesome cells all around the breast, yes. That's why I feel the necessity to do something.

I just talked to my dear friend tonight. Twelve years after her first lump, rads, tamox, she got cancer again in her other breast at a stage one, so she decided to just be done with them and had a BMX. During the final pathology report, they detected another small invasive cancer they did not even know was there. So, they tested her lymph nodes (another surgery), and 2 had cancer. Really? How could they not have found it during her regular mammos? How did it grow and spread so fast? This scares the you know what out of me, and I feel the inner strength to have a BMX. Then, I waiver... Such a wrenching decision.

I go to my breast surgeon tomorrow and hope to get some guidance. I also will be talking to my personal GP in the next few days. Finally, I have an appointment with a radiologist Monday. I am assuming i should talk to a plastic surgeon before I make my final decision, right? I hope my BS will recommend and set me up with one.

 Thanks ladies!  

Beesie

Infobabe, you're absolutely right that one of the problems in quantifying the side effects of rads is that it often takes 15 years or more for a side effect, such as a secondary cancer, to develop. The study that I referenced in my post yesterday covered a 30 year period.  This means that this study should provide a good measure of the side effects of rads, but because the patients were treated so long ago and because treatments have improved, we can fairly assume that the risks today are lower than those found in this study.  So whereas this study suggested that 0.4% (less than a 1/2 percent) of women who have rads for breast cancer might develop a secondary cancer from the rads, with today's radiation regimens the risk is likely lower than that. 

I agree that if you search for the side effects from rads, you can find lots of websites with long lists of side effects. What those websites pretty much always mention is that most of the side effects are temporary. What those websites never seem to mention is the percentage of women who are affected by each of those side effects.  What I tried to do in my previous post was document the percent affected by some of the more serious side effects.   

With regard to the impact of radiation on the lungs, I found the following article here on bc.org:  Smoking During Breast Cancer Radiation Therapy Increases Risk of Lung Cancer 

And here's what it says about non-smokers:  "Women who didn't smoke and had radiation to treat breast cancer were no more likely to develop lung cancer than women who didn't have radiation." 

There are of course other lung conditions that can develop as a result of rads however from everything I've read, it appears that these conditions are almost always temporary.  

Since this thread was started by Mom_To_Three, who is trying to decide between a lumpectomy, MX and BMX, if we are going to talk about risk of side effects from rads, we should also consider the side effects of having a MX with reconstruction.  

• With a MX, there is a 100% risk that the patient will lose most if not all natural feeling and sensation (including sexual sensation) from the breast and nipple (even with skin sparing and nipple sparing mastectomies).  
• There is a 100% risk of numbness in the breast area (some women have just a little; others have a lot but there will pretty much always be some).  
• For those who have implant reconstruction, there is approx. a 30% chance that revision surgery will be necessary.  I believe that approx. 3% - 4% 'undo' their reconstruction because of problems and pain. 
• I have seen studies that suggest that up to 20% of women have post-mastectomy pain syndrome, and up to 50% of women have some chronic post-mastectomy condition such as phantom itching, chest wall tightness, rib tenderness, etc....  
• Sentinel node biopsies usually aren't done on women with DCIS if they have a lumpectomy but usually an SNB is done if the patient is having a MX.  After an SNB, there is approx. a 7% risk of lymphedema (many believe this number is understated since lymphedema is not well reported).

.

That's a short list of some of the long term and/or permanent side effects of a MX. My purpose in listing those was not to discourage anyone from having a MX, but to present the other side of the coin, since we've been talking so much about the side effects of rads.  

What it comes down to is that a diagnosis of breast cancer doesn't present us with any easy or good choices.   

Mom_To_Three

Sad but true, Beesie. We get to pick between the lesser of two evils... Hopefully I have an epiphany tomorrow. Good night all.

xtina

Mom to three-

I feel for you!  I went through a similar decision making process.  It's difficult and is different for everyone.  Beesie has some wonderful posts/info there - asking yourself all of those questions and searching for your true answers will help.  Also, I recommend speaking to all physicians that would be involved in your care and treatment prior to deciding.  I met with bs, ps, rad onc and med onc before doing anything.  They will be able to give you your personal future risk scenario, go over in detail the risks or side effects involved with each treatment, so on and so forth.  It's best to make a decision after hearing all of that and doing whatever researching and soul searching you need to do.  

I was 40 at diagnosis, 5mm of grade I-II DCIS.  Originally I was leaning towards a mastectomy, esp when I was confronted with the possibility of carrying the BRCA I/II mutation, but after all was said and done I decided on a lumpectomy with reduction on both breasts. I lost a lot of weight previously, and had a lot of extra hang there, so my bs recommended me to a ps for reconstruction/reduction for symmetry.  If there was one bonus in all of this it's that I got some nice perky "noobs" out of this whole thing, all covered by ins. 

I started rads last week, and may or may not proceed with tamoxifen afterwards.  My personal rate of re-occurance after the lumpectomy and rads is about 6%, if I do the tamoxifen it will be about 3%.  The potential risks given to me for rads were relatively low for my specific situation, about 1% for any heart and lung issues.  For me, this was enough - to me, that's pretty low.  After some full research on mx and reconstruction, I decided it was just not appropriate for me. As Jamie said sometimes people don't realize what's really really involved with an mx and reconstruction and just think it's "not that big of a deal", but we need to be realistic about what's involved and make sure whether it's right for us or not.   

To answer one of Beesie's list questions, even if I were to be rx'ed again in 2 or 30 years, I truly am happy with the decision I've made and have no regrets about my choices.  I've made the decision that's best for me with the info I have. Whatever you decide, take some time and go with your gut and either way you'll wind up with what's right for you.

Good luck and let us know what happens!