Can I join?

ml143333

Good morning ladies!

I was diagnosed with infiltrating IDC on 7/11/2014.  So far, they say stage 1.  Tumor is 1.5 cm, ER+/PR+.  HER is indeterminate and awaiting further testing.

I found the lump by accident in late June.  Had my diagnostic mammo/ultrasound/biopsy on 7/9/14.  Diagnosis on 7/11/2014.  Have already had the BRAC testing - just waiting for results.  Have already seen my surgeon and she is wonderful!  Had my MRI today and meet with the plastic surgeon tomorrow.  My breast surgeon says surgery in August before the kids go back to school is totally doable.

There is no breast cancer in my family so I am the first.  Lucky me! 

I know the survivorship rates are great and recurrence rates vary little between lumpectomy/radiation and mastectomy, but for me, bilateral mastectomy with reconstruction just makes me feel better.  My surgeon said she understands and said that a lot of her younger patients (glad she considers me younger at 46) opt for mastectomy with reconstruction.  She said that I am a perfect candidate for lumpectomy with little cosmetic changes since the tumor is the 11:00 position of my right breast but that she will do what I want.  I asked her the age old question, if it were you, what would you do?  She said that she like me, would have mastectomy with reconstruction to cut down recurrence rates even further and to feel like I had a little more control over the situation.  I am a worrier by nature.

My husband is great!  He has been to all of my appointments with me so far and a rock.  He has cried with me, laughed with me and everything in between.  I have three kids.  My oldest daughter is a junior in college and away from home.  My son is 13 and my youngest daughter is 12.  They are all super supportive and I couldn't ask for more.

It is weird to know that I have cancer though, because I don't feel any different.  As much as I knew I had cancer when I felt the lump (I just had a feeling no matter what everyone said), when I received the diagnosis, I knew I would be fine after treatments were finished.  God answered my prayers.  I prayed, of course, that it wouldn't be cancer, but if it was that it would be curable and that is the answer I got.  Breast Cancer is a booger, but it is curable now, thank the Lord above.

I hope that you wonderful ladies will have a great day.  I look forward to meeting you all.  I know that overwhelmingly, I am positive about my prognosis, but I have my days just like everyone else.

Anonymous

Oh no, I'm so sorry. I wish that I could reply to your post's title by saying "No! You cannot join"!  - hoping that would make it all go away. Sadly, I don't have that power. 

I was also diagnosed at age 46.  My oncologist said I had an "old lady's cancer in a young body."  Heehee...yep, we like to be called young, don't we?  I have one daughter and she was 13 at my diagnosis, so I can perhaps feel a bit of what it's like to be in your shoes.  I was a single Mom; sounds like you have a very supportive husband who will be of great help to you both physically in your chores and emotionally. Breast cancer is certainly, as you say, a booger.  A good attitude like yours will serve you well.

Sorry you have a reason to be here, but glad you found us.  A more supporting group of people you will never find. Best to you as you go forward.

 

StayingFocus

Hello,

You said it right..."I am positive about my prognosis". Having a positive attitude is crucial. There is a definite connection between the mind and body and we all must draw on that relationship to fight and overcome any obstacles in our path. Yes, you will have days that really sucks, but knowing that you have a loving family will help you carry forth. 

Sorry you had to join us here, but you will meet a group of members that are sooooooo wonderful and knowledgeable!

Stay strong!

bluepearl

Mastectomy reduces local recurrence to about 1-2%. It has no effect on distance. Much will depend on your genetic status.....and get the oncotypeDX test to see if chemo will be of any benefit. You so far have good prognostic factors. Hopefully node negative as well. Newest info out says melatonin and/or dark bedroom while sleeping aids tamoxifen while low levels of melatonin stops tamoxifen from working effectively. Consider this (no more than 1 to 1.5 mg/night though). I have had two primary breast cancers, a two years apart. I have had mastectomies for both despite being small tumors (1cm and 8mm) but I am happy with my decision. Didn't want reconstruction. I did have post mastectomy pain syndrome but this is mostly related to an aux dissection (sentinal node isn't so bad)...a friend has worse pain now after lumpectomy than I but I did have 1 and half years of bad pain..then it eased off until it isn't noticeable unless I life fifty pound of bagged dirt!...which is better than my friend. So, it is all individual. I wished I had had the mastectomy (double) in 2011, but then they may have had to have done another aux dissection on finding the other cancer and then I would have had more pain. With you...my choice...if all else is good.....lumpectomy. You can always chose mastectomy later if it really bothers you. Interestingly, certain other studies have shown that lumpectomy+ radiation has better survival rates than mastectomies, although they don't know why...and it is still an association rather than a cause and effect. Be well. Be happy.

Moderators

We are sorry that you have to join, but glad that you have done so. Here you will find a wonderfully supportive community. Please keep us posted as to how you are doing.

All our best,

The Mods

justamy

I didn't feel any different after the DX either. I'm glad you joined the group...I am new but these ladies are very helpful. I am also getting a bilateral mastectomy. Mine will be after chemo. I am 42 and yep loved it they called me young. Welcome!

DarlaJ

Dear ml143333 and whatnow, I too just got diagnosed at the age of 46 with IDC, I don't know the stage but the grade is 2 and size is 1.1cm. my appointment with an oncologist is tomorrow afternoon. I wish I had your positive attitude. I have gone through phases in the last week of feeling like a fighter ( exercise, eating healthy, taking my vitamins ) to getting really down, crying, and wanting a cigarette, drink, or my xanax. This has been the most confusing time in my life. I wish you all luck. 

Darla

ICanDoThis

Here is the document that Beesie put together that is likely to answer all your questions.

Personally, I decided that, because I didn't know, and my surgeon recommended lumpectomy, to go for lumpectomy, because I could always cut more off, but I couldn't glue them back on. The first couple of years, follow-up was hard, but now, I am so glad that I still have my body basically intact.
We each need to do what works for us

Here is a post by one of our resident experts, Beesie. I have copied it for you in case she misses your post:

"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?"

amandak67

Hi all,

I had to join this club too… it's been a roller coaster of highs and lows! 

Current high? I spent the night dressed up as a Princess having a tea party with my daughters! The hospital I'm at has this resource that helps kids understand their cancer through a story about a Princess. The adult oncology program stole a copy for us Moms! If only they could see my tutu!

Either way, just wanted to say "hi!"

Amanda

Moderators

Dear amandak67

Welcome to BCO, but sorry you're here. The process is not an easy one and you are not alone

Love the princess tutu concept and may you have a 'fairy godmother' to grant your wishes. Being a mother of daughters is extra streess too.

If you care to add your Dx (diagnosis) in your profile, others on here will know more of your problem and be able to relate more and give more pertinent comments.

We wish the Princess all the best.

The Mods

mdg

I am sorry you are joining us but glad you found us!  This site helped me through it all.  It has been over three years for me now and life is normal and good.  I had a similar diagnosis to you.  I did also opt for the BMX with reconstruction.  I am happy with my decision.  Good luck with everything!  Hugs!