What Next? I Can’t Decide. I’m Stuck.

Margot62

Hi Everyone,

Thank you in advance for any insight you can offer.

Surgery is scheduled for the 22nd of this month. The cancer center I am going to is recommending a lumpectomy plus radiation for a 7mm IDC on left breast. They are a well-known cancer center, so the wisdom is to listen to them

But, I’m against a lumpectomy—at least for this moment. I seem to change my mind everyday. I had two aunts die of BC, and one had BC three times and never a mastectomy. I know aunts don’t worry geneticists as much as mothers or sisters with BC, but their stories live with me. And other people I know who didn’t do a mastectomy—like my best friend—the first time she was diagnosed also died of breast cancer, despite chemo and radiation.

I know everyone is different, but again, those stories stay with me.

But the biggest worry for me is my extreme sensitivity to drugs. I am super, super, sensitive to drugs of any kind. I can’t drink coffee, take cough syrup, birth control, etc. Very few people are like this, but it was explained to me once by a doctor that I don’t have the enzymes that break down drugs quickly, so something like a cup of coffee just stays in me all day. Before I was diagnosed with cancer, I always said to my husband, “I hope I never get cancer because I can’t take drugs.”

And yet, here I am! It’s like a big cosmic joke almost—one that isn’t very funny.

So, I’m leaning towards a mastectomy. If I have clear nodes and margins, I wouldn’t have to do radiation, according to my docs. I already know I won’t tolerate the hormonal treatment afterwards. My body would probably not be able to handle it although I’ve agreed to try.

So, you can see why I’m giving myself the best chance—no matter how radical it might seem. What if I can’t handle other therapies if I have a recurrence?

But I’m at the stage in this dramatic event, where I can’t make up my mind. Nothing feels right. I’m scared, I’m confused and I feel like my docs don’t understand my sensitivity issue with drugs. I am worried about dying, about living, about it all!

How do you come to a decision? How do you find the strength to decide and get right about it all? And go confidently forward?

Thank you for listening!

Love and good thoughts to all.

Salamandra

Hi Margot62,

Just fyi, mastectomy and lumpectomy+radiation are local treatments, and both have equal risk for distant recurrence. Hormonal therapy is recommended no matter which you do, to reduce the risk of distant recurrence. Local recurrence with a mastectomy is still possible.

Mastectomy *may* get you out of radiation, but like you said, it may not.

It's really hard to compare cases among friends and relatives unless you really know all the details of the genetics and hormones of their cancer, treatment and surveillance plans. And even then, there is an element that's luck.

Given how tiny your tumor is, I'm guessing there is not great urgency on the decision. Here are some options you might want to think about:

1. delaying the decision until you feel you have clarity. Maybe taking a break from doctors appointments and thinking about it and seeing what floats up for you.
2. Schedule (or plan to schedule) a mastectomy for about a year out, but have the lumpectomy first and see how it goes, what the node results are, and what your oncotype score is. If you are feeling comfortable, you can always cancel the mastectomy, but having it on the calendar may help your emotional equilibrium.

To me it sounds like you might benefit from a few days or a week of just getting away from it all. It sounds like maybe your intellectual and conscious mind has done its work, but you need to get in touch with your feelings and your gut. For different people, different things help with that.

April 22 is not that close, you still have time!

Rah2464

Margot God bless you. I also decided on mastectomy for my IDC. It is a significant surgery without a doubt. But I chose my path because my tumor was on my left side, close to my chest wall, and I didn't want the radiation so close over my heart. I knew going in that until we had my final pathology, my treatment plan could change. If they couldn't get clear margins I was going to have radiation anyway. If my lymph nodes were positive or my Onco score too high, I would be facing a choice for chemotherapy. I am doing Tamoxifen, soon to switch to an AI. I will do that as long as I can.

Are you thinking of doing reconstruction? I had a nipple sparing immediate reconstruction. The recovery for me has extended a bit due to some cording issues but I have to say I do not regret my decision. I think you have to make a list of the pros and cons of your decision and really trust your own personal instincts about what is best for you given the information you have from your medical team. Is there a BC support group locally you can tap into? Those ladies may be a wealth of knowledge about their choices.

Once I had made my decision on my surgical plans, I felt a lot more peace because then I could move forward. It is the process of waiting for test results, then waiting to determine a treatment plan, then waiting for surgery that drives you absolutely nuts. I wish you well and sending you warm hugs.

Ingerp

Just a word on left side radiation. I think any heart/lung involvement just doesn't happen any more. My RO looked me in the eye <twice> and said, "I will not irradiate your heart." The equipment is so amazing these days. I did the breath hold and it was just not a big deal. I agree it's important to look at long-term outcome, which is the same with mastectomy and lumpectomy/rads.

Bottom line is your mind is still mulling this over, and you shouldn't rush the decision. *Most* important is that you not look back. Your mind will settle on something and *then* you will be at peace and go forward. Women have very individual reasons for choosing the path that they do, but I don't think I've ever read about anyone who regretted her decision. There is no right or wrong--there's only what's right for you.

As weird as it sounds, I'd try to push it out of my mind for a few days. I think sometimes if you can focus on something else, your subconscious will continue to evaluate things and eventually one of the options will rise to the top. Go see a fun movie this weekend. Or binge-watch something on Netflix. Take a step back for a while.

cassiecanada

Hi Margo - I am in same boat!
I had a lumpectomy but may
be offered a mastectomy if my
gene test comes back positive.
Otherwise, Its radiation full breast
But i fear radiation and drugs.
Drugs of any kind disagree with me.
Radiation is another huge issue.
With a madtectomy, i wont
need radiation. i cant decide either.
I did hear that lumpectomy first
is advised and then madtectomy
at later time if recurrence etc.This
seems logical... can always go forward,
but with mastectomy cant go back...
like do things in steps . Plus, i have read
posts from women who have a recurrence
in the metastized area.

Margot62

I’m so relieved to hear from you! I feel like I’m sailing on a boat all alone!

My difficulty in lumpectomy is that if the cancer does come back, I’ll have to go through this all again. I had an aunt who had cancer three times in the same breast. The final time, she refused treatment and passed away. She’d had enough.

To me, it seems as if I have a mastectomy, I’m not giving the cancer a chance to come back in the same breast. Does that make sense?

Margot62

thank you for this amazingly positive and informative response, Rah!

May I ask how long it took you to make a decision? And what factors contributed to your decision?

How was the mastectomy? One side? How long did it take you to recover? Are you at peace from having dodged radiation? Are you happy with your reconstruction?

MelissaDallas

Margot, you should be aware that even with a mastectomy it is impossible for surgeons to remove every bit of breast tissue, and while not a frequent thing, you can still have a recurrence or even new cancer in the same breast

beep7bop

I am sending you this note because of the last 8 weeks in my life!! I had lumpectomy in the past in my right breast twice along with biopsies.at least three times have been on watch every 6 months for the past 12 years. But had Mammogram Feb 7th 2019 , then 3 D images and ultrasound the core needle biopsy in Left it was IDC I was tired of the game so went for Double MX. Well I have CANCER in both breast. Don't have my stage yet because now they have to go back in and do Nodes and get clear margins on the right. Everyone has to make their own choice but I think I waited to long. Good Luck to you and yours and may God watch over you.

jessie123

Margot62 -- One thing to consider is the extent of surgery you will undergo. A double MX is no small surgery--- even for the young. A lumpectomy is safer surgery --- it's outpatient. I was home at 11:30 in the morning and had absolutely no pain --- didn't even take an aspirin. I think with a MX you may have to take a few narcotics. Also, my breast is still there which makes me happy. I understand your hard time with the decision. It took me 31/2 months to make the decision. It was the hardest decision I have ever made in my life.

Beep7bop --- did your imagining include yearly MRI's.

ruthbru

Here is a very helpful and unbiased post by Beesie, one of our resident experts:

Years ago I put together a list of considerations for someone who was making the surgical choice between a lumpectomy, mastectomy and bilateral mastectomy. Over time I continued to refine the list and add to it, thanks to great input from many others. Over the years I have posted this many times, and although I don't spend much time on this board anymore, a number of the long-time members here have continued to re-post it when the question comes up. In reviewing the post, I have updated a few of the considerations based on new research, what is now available with reconstruction, and new issues I've seen raised on this board. I have also rewritten and added to the research section at the beginning, to incorporate the latest research findings. I posted this yesterday in someone else's thread but upon thinking about it, I decided to start a new thread instead, so that the post is easier to find, since so many people ask about it.

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 specifically written for those who have invasive breast cancer; some of the considerations are different for DCIS and I posted a similar list for women with DCIS on the first page of this thread: Topic: lumpectomy vs mastectomy - why did you choose your route? (DCIS)

Before getting to the list of considerations, here is some research that compares long-term recurrence and survival results. I'm including this because sometimes women choose to have a MX or BMX because they believe that it's a more aggressive approach. If that's a big part of someone's rationale, it's important to look at the research to see if that's really true. What the research has shown is that in most circumstances, long-term survival is the same regardless of whether one chooses a LX with radiation, a Unilateral Mastectomy, or a Bilateral Mastectomy. This is largely because it's not the breast cancer in the breast that affects survival, but it's breast cancer that has moved beyond the breast that could lead to the development of a metastatic recurrence. The risk that everyone with invasive breast cancer has is that some breast cancer cells might have moved beyond the breast prior to surgery. So the type of surgery one has, whether it's a lumpectomy with rads or a MX or a BMX, as a rule doesn't affect survival rates. It is important to note however that with a lumpectomy, it is assumed that the patient will also have radiation therapy. In fact, a number of recent studies suggest that there may be a small survival advantage in having a Lumpectomy with rads (vs. having a UMX or BMX) possibly due to the benefits of having radiation.

***UPDATED*** Here are a few studies that compare the different surgical approaches:

Survival Comparisons for Breast Conserving Surgery and Mastectomy Revisited: Community Experience and the Role of Radiation Therapy

Overall survival according to type of surgery in young (≤40 years) early breast cancer patients: A systematic meta-analysis comparing breast-conserving surgery versus mastectomy

Breast-conserving surgery followed by whole-breast irradiation offers survival benefits over mastectomy without irradiation.

Survival after lumpectomy and mastectomy for early stage invasive breast cancer: the effect of age and hormone receptor status

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

Lastly, the following is not a research study, but is an excellent write-up summarizing the implications of the most recent research:

Decision Making in the Surgical Management of Invasive Breast Cancer—Part 1: Lumpectomy, Mastectomy, and Contralateral Prophylactic Mastectomy

***UPDATED*** Now, on to the list of 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 endocrine (hormone) therapy (Tamoxifen or an aromatase inhibitor) or Herceptin or chemo? It is very important to understand that if it's believed necessary or beneficial for you to have chemo or endocrine 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/an AI 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 Radiation? (Note again that some women who have a MX may still require 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 Mastectomy (MX) or Bilateral Mastectomy (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 have significant problems with your surgery or reconstruction, or 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, options that will help you get a more natural appearance including having a nipple sparing mastectomy (NSM), having pre-pectoral implant reconstruction, or having autologous reconstruction (such as DIEP or GAP surgery). Not all plastic surgeons are trained to do these procedures so your surgeon might not present these options to you. Do your research and ask your surgeon about the type of procedures you are interested in. If he/she doesn't do that type of reconstruction, it may be worth the effort to find a plastic surgeon who does, in order to see if the option you prefer is available for you, depending on where your cancer is located in your breast and your body type.
• 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, 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, but it can take a few years. For this reason, some women choose to have a BMX in order to avoid the anxiety of these checks.
• If you have a MX or BMX, how will you feel about the minimal screening you will have in the future? For most women, a MX/BMX significantly reduces the risk of a localized (in the breast area) recurrence or a new primary breast cancer. However because it's impossible for even the best surgeon to remove every cell of breast tissue, there always remains a small risk (1% - 2%) that cancer could recur or develop in the area of the removed breast. But with no breast(s), most women no longer receive imaging tests - no more mammograms, ultrasounds or MRIs (although some with implants may get MRIs on occasion to check the integrity of the implant). Women who have a MX or BMX should be aware of this and need to consider how they will deal with this and what they will do to monitor their breasts.
• 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. Keep in mind however that over time the fear will lessen, and having a MX or BMX does not mean that you have completely eliminated your breast cancer/recurrence risk; 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? Breast cancer 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). This second breast cancer diagnosis could happen in just a few years or not for decades. As compared to the average woman who has not had breast cancer, several studies estimate that breast cancer patients have about double the risk to be diagnosed again over their lifetimes. This risk level may be compounded by the type of breast cancer you had (lobular breast cancer may be higher risk to occur contralaterally; the research goes both ways on this) or if you have other risk factors. Find out your risk level from your oncologist and 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 to carry a BRCA mutation). Those who have a genetic mutation may be significantly higher risk to get BC again (depending on the specific genetic mutation) and for many women, a positive genetic test result is a compelling reason to have a bilateral mastectomy. On the other hand, for some women a negative genetic test result helps with the decision to have a lumpectomy or single mastectomy rather than a bilateral. Talk to your doctor. Because we've all had breast cancer one time, we are all higher risk than the average woman to be diagnosed again but the risk level is different for each of us so find out your risk, based on everything that is unique to you.
• 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 and yours alone. Don't make the decision based on what someone else (partner, parent, child, friend) wants you to do or based on what another breast cancer patient did. How someone else feels about each of these considerations, and the experience that someone else had with their surgery and recovery might be very different than how you will feel 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!

NicoleRod

Ok so I am like you in the respect that I cannot take even coffee either. Also I have had Lyme disease and when i introduce anything new my body reacts badly. I cannot take ANY pain killers not even codeen. I had a lumpectomy in 2015 and radiation for an INSITU (contained in the milk duct) cancer stage 0. I had no real side effects from radiation except scar tissue pain if I hold the phone on my shoulder...etc. BTW..I too had a paternal Grandmother that had breast cancer and a paternal aunt that had it. My mom and 2 older sisters over 50 and 60 yrs old do not and have never had cancer. I was told that because my cancer was INSITU cancer of recurrence were extremely low. My oncologist even had agreed that I probably would not benefit from tamoxifen and that he had numerous patients stage 0 like me INSITU and were over 5 to 8 years out no recurrence no tamoxifen. But....like I have heard so many people say now ....that is not always the case...

Feb 2019.... Cancer back same breast closer to chest bone. I just did the double Mastectomy 3 weeks ago with no reconstruction for fear of Breast Implant Illness. I have from the original biopsy ER+ 100% PR+ 20% HER2- negative my cancer is considered a stage 1 but grade 3. I am waiting on Oncotype results held up by insurance...should have them this week. My fear is reactions to hormone therapy and Chemo.

Maybe I misread or did not understand your post but it sounds like you think if you get a double mastectomy you think you won't need any further treatment? That is definitely not the case. The further treatment is to prevent reccurance...and that doesn't usually come back to the breast after double mastectomy it comes back to bone or organs. I was reading that some of the original cancer cells can travel via blood stream and lay dormant for years..literally sometimes over 15 years and then they wake up. I am new to all this info. I am trying to learn as much as I can and I will have to make a decision soon about chemo and hormone therapy. So I feel for you.

Hope you peace after deciding.

Rah2464

Margot - in response to your questions I think it took about 3 weeks to finalize my decision. I went with a double mastectomy. The primary driver for me was the fact that I had very very dense breast tissue and my tumor did not show with conventional imaging for apparently years. My tumor showed up finally on an MRI after I met with a very attentive breast surgeon. I also had a sister that had breast cancer 20 years earlier with a single mastectomy and was able to question her about her feelings and choices. Helped me understand a bit more about what I was getting into. Regardless, mastectomy is a difficult surgery. You definitely lose sensation. Heck I could slam my foob in a door and I really wouldn't notice. Initial recovery for me was about 8 weeks as I did nipple sparing immediate reconstruction. I will say that complete healing and getting into my old routine has taken longer, about 7 months but I attribute some of that time to adjusting to Tamoxifen which has been impactful to me. My new foobs are pretty, though, look much better than my old real boobs. The PS did a great job. And I am aware that with mastectomy, especially nipple sparing, I do have a 1-2% risk of a recurrence simply because they cannot eliminate every single spec of breast tissue.

There are so many things to consider, but you will get there. And your decision will be made based on the things that matter most to you. Beesie's guide to making that decision is wonderful and will help you ponder a final direction. Take your time, don't feel rushed and know that whatever choice you make it will be right for you and your situation. If you are really struggling, the advice I have seen here often which makes sense is to "start small" with a lumpectomy then transition to a mastectomy if you determine otherwise. Sending you hugs we all know how hard this is.

Tresjoli2

Beesie had the best advice I have ever seen on this decision...

https://community.breastcancer.org/forum/91/topics...

Runrcrb

margot - I agree with the early responses - take a breather and don’t rush your decision. You didn’t mention your age or the type of cancer (hormone/her2 status) both of which may factor in your decisions. Have you met with radiation and medical oncologists? My advice is to talk to more doctors than the breast surgeon. I had great confidence in my breast surgeon but used input from two plastic surgeons and my radiation oncologist prior to my final surgical decision.

spratt5

Hi Margot, I too am in the same predicament. I'm 42 diagnosed in March with left idc, no lymphs, Her2- , ER/PR+. I've decided to do a mastectomy on Left breast because I'm a B cup and don't want radiation. I did genetic testing and my report states that BRCA1 & Chek2 are variants of uncertain significance identified. So there isn't a significant clear mutation of either gene. So frustrating because there isn't enough data out there to tell me the % of re-occurrence with that genetic finding. I'm hoping that my BR oncologist surgeon can shed some light for me when I meet with her this week. Good luck and keep us posted on what you decide.

Snickers1968

Have you considered genetic testing given that your aunt's had it? My mom died young so I had it because my case is also on the fence and hopefully it will help me decide. I had a lumpectomy, DCIS and 2 foci of IDC 2mm and 6mm, the didn't see this on MRI and my margins weren't all clean. No nodes taken yet. My genetic testing was negative - I am not sure what an oncotype is? I haven't yet met with an oncologist. I started hormone therapy and it is making my depression worse but maybe the cancer is making it worse not the pill! I am also confused and frustrated about what to do next. A mastectomy scares me to death and I feel like a wimp with what so many others have triumphed through. I am also an insulin dependent diabetic so healing and infection are always a concern. I liked the idea of doing lumpectomy for now and seeing what happens. Also, get a second opinion from a different hospital and take your time. I am listing the positives and negatives of my options and praying about it. You are in my thoughts.

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