Recently Diagnosed and starting to question all my decisions

you may find you still need six monthly checks even after double mastectomy, is there anyone you can discuss your choices with as this is a forever decision? I think this may be what you are sensing in yourself and you do have time to decide? 

Sorry cant write more shoulder hurts too much

Hi Wynne - I think however one reacts to this stuff is perfectly normal. Often times were tend to crash after active treatment ends because before then we're just taking care of business.  Are you having your DIEP at PRMA? I'm in OKC, and that is where I would have gone for DIEP, but I decided not to go out of state. I think second guessing is natural also. BUT - If you don't feel comfortable with your decision you could just do the lumpectomy now and decide about the recon later. You might want to join the March / or even April Surgery Sisters. Those ladies will be facing some of the same things you are in the next few week. Also - FYI - I am Stage 1 with implant reconstruction and my yearly screening consists of an MRI.  BC can be a very lonely diagnosis. Early on I felt like I was adrift on a raft in the middle of the ocean. I was TERRIFIED!  Just know that someone is always here for you. As one lady put it we're open 24/7. Come back often for information and support. Gentle hug.

Hi Wynne, 

Now listen, if you're going to call yourself a whiner, you're going to have to do a lot more whining than that. Lordy, you should HEAR some of the whining that goes on around here & it's okay 'cause we are all okay about it. I lived in San Antonio for a long time - one of my most favorite cities. Anyway - maybe you are in denial - it does happen, but what if you are? From what I can tell, people's emotions are all over the place when they are diagnosed and for quite some time thereafter. There's no book to tell you the right or wrong way to feel about this -  and really, it takes a while to process. It is good, I suspect that you have found this board if for no other reason than there is a lot of really good information here - more importantly, there's a ton of support & if you do all of the sudden need to vent, cry, whine, laugh hysterically, whatever - this is a really good place to do it. 

It's hard to face those pre-op tests... of course it is - you were just hit with a diagnosis that you didn't expect & now you have to face these other things and it's normal that you'd be worried that another shoe will drop. Many, actually I'd guess most, of us get some anti-anxiety meds for a time period post diagnosis. And surgery is a big deal. There are a lot of threads here about what to expect, what recovery is like, what you need, etc. And reading through them might help you a lot. Keep asking questions & sorry that you were diagnosed, but glad you found us. 

wynne - there is a diep2014 thread that you might want to read and join.  There is one or more ladies that either did go or are going to PRMA.  Diep is a big surgery and it's hard to say how recovery will be, but based on my reading of experiences most would make the same decision again.  I would.  

Ridley

Wynne, having a mastectomy is no guarantee that you 'will never have to do this again'. I am going to repost something that one of our resident experts, Beesie, has put together because I think it has a lot of good information to consider. A mastectomy may very well be the right choice for you, but you want to go in with your eyes wide open. Best of luck.

"Some time ago I put together a list of considerations for someone who was making the surgical choice between a lumpectomy, mastectomy and bilateral mastectomy. I've posted this many 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. 

Before getting to that list, 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 consistently shown is that long-term survival is the same regardless of the type of surgery one has. This 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 affect survival rates. Here are a few studies that compare the different surgical approaches:

Lumpectomy May Have Better Survival Than Mastectomy

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

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).
• Do you want to avoid hormone therapy (Tamoxifen or an AI) or Herceptin or chemo? It is very important to understand that if it's believed necessary or beneficial for you to have chemo or take hormone therapy, it won't make any difference if you have a lumpectomy or a mastectomy or a bilateral mastectomy. (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.)
• 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.
• 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.
• 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.
• 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?
• 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).
• 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 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 (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.
• 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.
• 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.
• 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 and radiation. Is this risk level 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 over time the fear will fade, and that a MX or BMX does not mean that you no longer need checks - although the risk is low, you can still be diagnosed with BC or a recurrence even after a MX or BMX. Be aware too that while a mastectomy may significantly reduce your local (in the breast area) recurrence risk, it has no impact whatsoever on your risk of distant recurrence (i.e. mets).
• 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 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 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 much higher than you think, or much lower than you think (my risk was much less than I would ever have thought).
• 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?
• 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?

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Wynne50, BC is an endless set of crappy choices!  We will always worry about all the what-if's, but it's good to feel confident about your treatment path.  Are you comfortable with your decision to have mastectomy?   I'm concerned about you not having enough support after DIEP.  Will you have help?  

I didn't fall apart either, but I was in shock.  It was all very surreal!  

OK, please know that I am not just saying this to you, Wynne, but to other women who may read this in the future.

I had exactly the same diagnosis you do, and did absolutely the reverse of what you are contemplating. My first reaction was to cut the damned things off, completely, but, as I did more and more research, I realized that, for Stage 1 Grade 1 bc women, having a mastectomy would not prevent recurrence any more than a lumpectomy would. And a double mastectomy with reconstruction is a monster surgery. I was back at work in 3 days. My surgeon promised me that if I still had a lot of fear or problems, we could go back and do a mastectomy later, when things settled down. And the fear did go away, and I haven't had any complications since I finished treatment, although I must admit that I did get an infection, and it was no fun.
As for follow-up, I had 6 month follow-ups for one year, and then graduated to 1ce a year, which was really just to renew my prescriptions for tamoxifen. Recurrences for us are either in the first couple of years (something got missed) or many years out (something got out of the boob before the surgery). When my onc left her practice two years later, I never went back, and never took any more tamoxifen or an AI. I am now 6 years + and I am fine. My gynecologist does a good breast exam, as does my primary care physician, and I did not even do a mammogram this year. I will probably have one next year.

The only problem I see with this site (and it saved my sanity, so please understand that I loved it here) is that women with a very, very low chance of recurrence, like us, read the posts of women who almost always have a higher chance of recurrence than we do. The few (2? 3?) women who had a recurrence from Stage 1 Grade 1 are many years out. 

I am not saying that there is no chance of recurrence, but it is really low. I struggled because I thought I had to have chemo and a mastectomy, like everyone with BC on tv does. Wrong. 

Please know that I am not trying to tell you, individually, what to do. But I really felt that this needed to be said.

Ha.  I am answering you.  I am tired of second guessing myself AND the great doctors I got at the Mayo Clinic in Scottsdale.  I am 55 and all this information coming at you like a bullet is wild.  I had a lumpectomy and got on chemo as fast as I could because I was triple negative and my tumor was little but crazy.  They had tons of software to crunch all the numbers for survival rates etc and I prayed  to God to help me. and BOOM    Here I am.  Leah

Wynne50 - I just wanted to let you know that I had full range of motion almost immediately after my BMX, so it may not be as bad as you anticipate.  God knows we're all different in how we recover and heal.  Someone else washed my hair the first time, but by the time the drains were out (six days) and I could take a shower, washing my hair and drying it myself were the least of my worries.  Maybe have your hair done the day before surgery, and then you'll be all pretty for your date with the doc?  Or arrange for your husband to drive you to the hairdresser and let them pamper you if you're not up to doing your own.  Hair is easy, healing is hard.

Your husband, due to the loss of his first wife, may be better prepared for whatever is to come than you know.  (Maybe even better prepared than you are.)   I'm confident that yours will stand by you on that rocky road between 'in sickness and in health' and I think his strength will surprise you...  Your job is to help him by letting him help you. 

Wynne, it's so good to hear you feeling confident about your choice.  Your husband sounds like he is going to be a huge part of your recovery. I was washing my hair two days after my BMX, but I had hips flaps instead of DIEP.  Short walks and using the aspirometer really helped my initial recovery.  Wishing you the best treatment and gorgeous outcome!  

Wynne50, listen to your gut. There is that little inner voice that makes you feel or do what you need to so you already know what works for you. You may be scared of it but you have to choose so listen to that inner voice. With BC treatments there seems to be opportunities to turn around a treatment plan if needed. I gambled on a lumpectomy but they found a bit more than what they had eventually found. So, 3 weeks later I had the mastectomy. I had already prepared myself for this decision so when it happened I said yes without a doubt. Educate yourself, research, learn from this site, stay away from negative people and surround yourself sites, such as this one, to get information. That Beesie is always busy giving us information so you can find her in several threads. You now have a room!

BTW, I lived in SA for 6 years, 2000 to 2006. Loved it and the food! Love living in Dallas now. Email me anytime.