Having trouble making surgery decision

Anonymous

Having trouble making surgery decision

marycal

Hi all -

I am having a very hard time knowing how to proceed with surgery. I have IDC, grade 1, ER+/PR+/Her2-, and apparently slow-growing. My surgeon recommends lump+rads, and she believes radiation is "pretty much 100% safe", which I think is a reckless thing to say. I know there is risk of damage, of which I am very worried about (especially since my cancer is in my left breast - over my heart). At the very least, no medical procedure is without some risk. I'm also finding it hard to feel comfortable with a decision without knowing the lymph node situation, which of course we won't know until after surgery.

I have been told that a mastectomy is "overkill" in my situation, and I don't take the procedure lightly by any means. I'm trying to weigh my worry of radiation with my worry of a mastectomy and its implications, and I'm spinning out. (But also, if it turns out I have positive nodes, wouldn't there still be a chance that I'd have to do radiation?)

Basically, I don't want to do either. I don't want to be here, having to make this decision.

To make matters worse, I can't get an appointment with the radiation oncologist for another 2 weeks. I got my pathology 1 week ago, and I have to wait 2 more weeks from today to meet with them and ask questions. In the meantime, I have a second opinion appointment and I'm hoping to find another radiation oncologist to talk to sooner.

I don't feel that I can make an informed decision without consulting with the rad onc, and in the meantime, all this waiting around is just pushing the surgery further out. I mean, how much time do I safely have to wait? I really want this tumor OUT.

Thank you so much for any help and guidance.

Lula73

have you had genetic testing done? That might give you a little better guidance at this stage in making your decision. If you test + for any of the gene mutations that increase your bc risk you may be better off doing mastectomy.

My diagnosis is the same as yours only right breast instead of left. My genetic testing didn't come in til after my surgery but I would've made the same choice anyway. I am an all or nothing kind of girl and chose to do double mastectomy with natural tissue reconstruction (no implants). This meant no radiation and since no node involvement, no chemo. Just Tamoxifen for next 5 years to block the estrogen and starve any cells that may have gotten left behind.

Hope this helps

LimnoGal

Another BCO member, Beesie, posted an excellent list of considerations for anyone facing the mastectomy/lumpectomy decision. Since I don't know how to link, I'll just copy and paste her list here. I hope it is helpful to you.

For the record, I chose a lumpectomy and radiation. I am comfortable with my decision. In the end, that is what counts.

- edited Oct 24, 2016 11:09AM by Beesie

Quite a while back, I put together a long list of questions to hopefully assist anyone making this decision. We are all different in how we see these choices, so rather than base your decision on what someone else did, this list is meant to take you through the pros and cons of each option, so that you can figure out what's important to you personally, leading to a decision that is right for you. 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.

Please note that this list is written for women who have invasive cancer (Stage I or above). Some of the decision factors are different for women who have pure DCIS (Stage 0). A different version of this list, written specifically for women with DCIS, is available in my post on the first page of this discussion thread in the DCIS Forum: 'Topic: lumpectomy vs mastectomy - why did you choose your route?'.

Here is a copy of my earlier post, with a few updates and some new / more recent research upfront.

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Before getting to the list of things to consider when making a Lumpectomy vs. Mastectomy vs. Bilateral Mastectomydecision, here is some research that compares long-term recurrence and survival results. I'm including this because sometimes women choose to have a MX because they believe that it's a more aggressive approach. If that's a big part of someone's rationale for having an MX or BMX, it's important to look at the research to see if it's really true. What the research has generally shown is that long-term survival is the same regardless of the type of surgery one has. The reason that the choice of surgery doesn't affect survival is largely because it's not the breast cancer in the breast that affects survival, but it's the breast cancer that's left the breast that is the concern. The risk is that some BC might have moved beyond the breast prior to surgery. So the type of surgery one has, whether it's a lumpectomy or a MX or a BMX, doesn't generally affect survival rates. There have been a few more recent studies that have however shown different results. A couple of studies have shown that survival might actually be higher for those who have a lumpectomy, possibly because these women usually also have radiation, whereas women who have a MX don't usually get rads. But another recent study suggested that younger women may benefit, in terms of long term survival, from a MX.

Here are a number of the studies that compare the different surgical approaches: (Note that a number of these articles are from Medscape, and you will have to register with them to be able to view the articles.)

April 2016 Is breast conserving therapy or mastectomy better for early breast cancer? and

August 2016 (this is another write-up of the same study as above) Young Patients With Early Breast Cancer Live Longer With Mastectomy

December 2015 Ten-Year Data: Lumpectomy and Radiotherapy Trump Mastectomy

December 2014 No Survival Benefit for Increasingly Used Bilateral Mastectomy

January 2013 Lumpectomy May Have Better Survival Than Mastectomy

October 2002 Twenty-Year Follow-up of a Randomized Trial Comparing Total Mastectomy, Lumpectomy, and Lumpectomy plus Irradiation for the Treatment of Invasive Breast Cancer

October 2002 Twenty-Year Follow-up of a Randomized Study Comparing Breast-Conserving Surgery with Radical Mastectomy for Early Breast Cancer

Now, on to my list of the considerations:

• Do you want to avoid radiation? If your cancer isn't near the chest wall and if your nodes are clear, then it may be possible 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 there is no guarantee that radiation may not be necessary even if you have a mastectomy, if some cancer cells are found near the chest wall, or if the area of invasive cancer is very large and/or if it turns out that you are node positive (particularly several nodes).

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• Do you want to avoid hormone therapy (Tamoxifen or an AI) or Herceptin or chemo? It is very important to understand that your choice of surgery – lumpectomy, mastectomy or bilateral mastectomy – will not change the recommendation as to whether or not you should have chemo, Herceptin (if HER2+) or endocrine (hormone) therapy (if ER+). So you can't avoid any of these treatments - if your MO believes they are necessary - by opting to have a MX or BMX. (Note that the exception is women with DCIS or possibly very early Stage I invasive cancer, who may be able to avoid Tamoxifen by having a mastectomy or a BMX.)

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• 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 usually is given for 6 weeks. A mastectomy is a longer, more complex surgery and the recovery period is longer.

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• How will you deal with the side effects from Rads? For most patients the side effects of rads are not as difficult as they expected, but most women do experience some side effects. You should be prepared for some temporary discomfort, fatigue and skin irritation, particularly towards the end of your rads cycle. Most side effects go away a few weeks after treatment ends but if you have other health problems, particularly heart or lung problems, you may be at risk for more serious side effects.This can be an important consideration and should be discussed with your doctor.

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• Do you plan to have reconstruction if you have a MX or BMX? 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.

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• If you have a MX or BMX, 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 have a BMX). 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?

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• How you do feel about your body image and how will this be affected by a mastectomy or BMX? 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 MX or BMX, 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 area of cancer can't be right up near the nipple).

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• If you have a MX or BMX, how do you feel about losing the natural feeling in your breast(s) and your nipple(s)? Are your breasts and nipples important to you sexually? A MX or BMX 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, 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.

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• If you have a MX or BMX, 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.

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• If you have a lumpectomy, how will you deal emotionally with your 6 month or annual mammos and/or MRIs? For the first year or two after diagnosis, most women get very stressed when they have to go for their screenings. The good news is that usually this fear fades over time. However some women choose to have a BMX in order to avoid the anxiety of these checks.

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• 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?

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• 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 and radiation vs. what it will be if you have a MX. Is the risk level you will face after a lumpectomy + rads one that you can live with or one that scares you? Will you live in constant fear or will you be comfortable that you've reduced your risk sufficiently and not worry except when you have your 6 month or annual screenings? If you'll always worry, then having a mastectomy might be a better option; many women get peace of mind by having a mastectomy. But keep in mind that a MX or BMX does not mean that you no longer need to remain vigilant; you must continue to be checked for breast cancer. Although for most women the recurrence risk after a MX is low, anyone can still be diagnosed with a recurrence or a new primary breast cancer even after a MX or BMX. This is because it is impossible for the surgeon to remove every cell of breast tissue; some breast tissue always remains even after a MX or BMX, around the edges of the breast, or just a few cells against the chest well or the skin. Be aware too that while a mastectomy may significantly reduce your local (in the breast area) recurrence risk, it has no impact on your risk of distant recurrence (i.e. mets).

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• Do you know your risk to get BC again, in either breast (if you have a lumpectomy) or your non-cancer breast (if you have a MX)? Is this a risk level that scares you? Or is this a risk level that you can live with? Keep in mind that breast cancer very rarely recurs 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 with a new primary breast cancer (i.e. a cancer unrelated to the original diagnosis) and this may be compounded if you have other risk factors. Find out your risk level from your oncologist. When you talk to your oncologist, determine if 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 for BRCA mutations). Those who are found to have a genetic mutation may be at very high risk to get BC again and for many women, a positive genetic test result is a compelling reason to have a bilateral mastectomy. On the other hand, for many women a negative genetic test result helps with the decision to have a lumpectomy or single mastectomy rather than a bilateral. Talk to your oncologist and determine if you should see a genetic counselor. Don't assume that you know what your risk is; you may be surprised to find that it's much higher than you think or much lower than you think (my risk was much less than I would ever have thought).

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• How will you feel if you have a lumpectomy or UMX 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?

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• 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? Consider as well how you might feel if your reconstruction is difficult and the results not to your expectations.

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I hope that this helps. And remember.... this is your decision. How someone else feels about it and the experience that someone else had might be very different than how you will feel about it and the experience that you will have. So try to figure out what's best for you, or at least, the option that you think you can live with most easily, given all the risks and unknowns associated with each of the options. Good luck with your decision!

Edited to add: This list, and the research findings at the front of the list, has been cut and pasted into many threads over the years, whenever someone has asked the question about choosing between a LX, MX and BMX. I am not on the board much these days, so if you find the list to be valuable and you see a post where someone is struggling with this decision, please feel free to copy and paste.

BC401

Had a similar diagnosis to Yours a year ago. And know exactly what You mean about "Wanting to get it OUT" yet want more information prior to making the Lumpectomy vs Mastectomy decision.

I choose the Lumpectomy recommendation as I had had OH surgery 3 months prior and felt I wasn't up to a more complicated surgery at that time. That made my decision process easy, so to speak.

As to RADS left side, they use a 'breath in and hold ' technique to minimize the threat of damage to lungs and heart. . age also on my side as to any side effects there. Am currently on a HI and know, if cancer were to return to that breast, a mastectomy would then be done.

Know You will make the decision that is right for You. Good luck and God Bless.

marycal

Thank you Lula73 and LimnoGal for your responses. And for posting Beesies information. It's very helpful and gives a lot to think about. It's hard though to truly know how you will feel after the fact. It's all a big leap I guess.

Thank you too BC401. I've been reading about breathe and hold. That's what you did? And did you say you were positioned on your side?

Hearing your experiences really does help.

ruthbru

I had a lumpectomy with radiation on the left side. It is really, really targeted and I didn't have any problems from the radiation then or later. I wouldn't let radiation be the deciding factor because sometimes even with a mastectomy a person will find (after surgery) that radiation is still recommended. My thought on the mastectomy/lumpectomy question itself was that if I wasn't happy, I could do a mastectomy later; but once my breast was gone, it was gone forever. As time has passed, I am even more glad that I made that choice. This is just me, but I would have had a hard time being flat, but the more I have learned about the problems with reconstruction, the less I think that I could ever go through that process (and it is a process, not a 'one shot and you're done' type of thing). I also wanted as quick of a recovery time as possible, with the least chance of complications (which, like any surgery, the more extensive the surgery, the more chance there is of complications). Radiation, for me, was the easiest part of the whole treatment (and my radiated breast actually looks 'perkier' than the other one). A friend of mine had BC about 35 years ago. Back then the only choice was a mastectomy. Once reconstruction became widely available, she did reconstruct. She is a surgical nurse, so has seen the whole thing from both sides of the operating table. When I asked her advice, without skipping a beat she said, "If you have a choice, go with a lumpectomy."

marycal

Thank you ruthbru! That's great insight!

ruthbru

ML1209

It is not a fun place to be. I just decided on a lumpectomy. My initial response at time of diagnosis was to take them both. I had chemo first, so had time to think, pray, research, and talk with others. I am at peace with this decision now. Hard stuff. Wish none of us had to be here.

ML1209

ruthbru .... did you have a nini lift with your lumpectomy?

ruthbru

No, I am a little lopsided but look fine in clothes, including sports bras and swimsuits. I would give it some time after surgery to decide on doing anything more. It takes about a year for the fat to move around and fill in the space. What might look bad initially, may eventually look pretty good.

ML1209

Thank you ruthbru. That is what my gut was telking me .... but sometimes you get overwhelmed with all the decisions, you can't decide what to do .

ML1209

Thank you ruthbru. That is what my gut was telling me .... but sometimes you get overwhelmed with all the decisions, you can't decide what to do .

ruthbru

My example is: I had surgery in March. That summer there was no way I could wear by favorite (shelf bra) swimsuit because I was obviously lopsided. (I had to go with one with a 'real bra' built in). Imagine my surprise and happiness when I tried it on the next spring, just for the heck of it, and it looked fine.