Aug 4, 2014 04:31PM jdboct wrote:

Good afternoon and hello. Just checking in. Haven't been around here much lately. My mom passed a few weeks ago, she was 91. She had cervical cancer in her late 40's went through treatment and never looked back!    MJS, so sorry about your friend. I will pray for her.  I am still helping out with my cousin who has stage 4 colon cancer. I go to chemo with him when I can. He is going to do a procedure where they put tiny radioactive balls into the liver to kill the small tumors there. He will do that next week.

On a more positive note. My wife Alice just went for her 1 year checkup with her breast surgeon. She is dancing with N.E.D.!  She said see you in a year, go have fun!  What a difference a year makes. So all of you going through this now please hang in there! It will get better. Bless all of you! 

Aug 4, 2014 07:33PM lonnie713 wrote:

hi sandie1973,

It really is a personal decision. I decided on a double mx. I know it was the best decision for me based on my cancer and family history.  Give it as much thought and time as you need.  Ask questions.  What works for one isn't necessarily good for another. Good luck with your decision.  You've come to the right place.  

 I remember being scared out of my mind but kept meeting total strangers telling me their story of survival and strength.  You Got This!!

Aug 4, 2014 08:14PM ruthbru wrote:

Sandie,  awhile ago one of our resident experts, Beesie, put together a post of things to consider when pondering the choice between a mastectomy and lumpectomy. I copied and saved it and will repost it below in its entirety. I don't think you will find anything more thoughtful or unbiased. Hope it helps:

"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?

.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 associated with all of the options.  Good  luck with your decision!"

Aug 5, 2014 08:19AM Delvzy wrote:

specialk Ringwood is about 1/1/2 hours from us so not far at all! Are you half Aussie ? Yes we all have our down times I have just had a very strange week had my visa hacked ( still waiting for money back ) trying to help a friend thru a bad breakup and lots of tiredness and little aches and pains which always concerns me. We have had cold weather and a lot of rain so it can get you down 

Aug 5, 2014 09:16AM sandie1973 wrote:

Hi everyone

Thank you all for your kind and reassuring thoughts. There is so much to consider in relation to the surgery. Part of me just wants the whole ordeal over with so was leaning towards another WLE with rads but there's no guarantees that clear margins will be achieved. At least a MX would be the end of it but then its having to go through the reconstruction procedure.

My cancer is highly hormonal receptive - ER 8/8 and PR 7/8 so tamoxifen is highly recommended for me. I have heard that tamoxifen can reduce the chance of a new BC in the opposite breast by 40%. I am not sure about the figures in the affected breast. Does anyone know the figures?

I guess I will need to chat with my oncologist about my risks of getting a new BC in the other breast and for the original BC to recur (in the affected breast) before I can make any decisions about surgery. I have a meeting with her on 18/8 as at half way point with the chemo and going to be switched onto 3 x Tax chemo regime after doing 3 x EC chemo. I have been told that I have 87% of being cured at 10 years. I am assuming that the remaining 13% is sprinkled over 10 years which gives me a risk of 1.3% of recurrence per year and 98.7% non recurrence. Is this correct? Don't really understand how they come up with these figures.

Has anyone changed their diet and the way they deal with stress after a BC diagnosis? Before my diagnosis, my life was very stressful and I had a particularly stressful period ( 2 years before diagnosis) that I strongly believe caused my BC to develop. I am only 40 and want more years ahead of me and the thought that my life could be cut short by this has been very traumatic indeed. I want to do everything possible to keep healthy and alive to see my children grow up and to meet my future grand children.

Apologies for all the questions. Think I am still in a profound state of shock and just terrified :( xx