Breast Cancer Survival Guide

Disclaimer: I am not a medical professional. This piece is not intended to be used as a diagnostic tool, or a recommendation for treatment. This is my personal account of the struggle my wife and I have been going through. Any medical terms, conditions, or descriptions are based only on my own incomplete understanding of them. If you think you might have breast cancer, or if you have been diagnosed with breast cancer, seek help from medical professionals!

Introduction

According to the American Cancer Society 1 in 8 women will be affected by breast cancer. That statistic suggests that nearly every one of us will eventually come into contact with someone who is going through or has been through this medical ordeal. Fortunately the survival rates for breast cancer, if it is detected early, are high and rising. The best advice I can give to someone who thinks there might be something funny going on with their breast is to get it checked out, immediately, yesterday!

The high survival rates are reassuring, sometimes falsely so. I believe people are lulled into a false sense of security by the statistics and, unless they have been through it, come away thinking, “it must be no big deal if so many women are surviving it.” If you or a loved one has been through it you know it is a big deal, a huge deal; a terrifying, devastating, horrible, huge deal.

My personal experience with breast cancer started two and a half years ago when my wife Trish was diagnosed with “Stage 0 Carcinoma in situ breast cancer.” Assuming a positive result for the presence of cancer, this is the best possible diagnosis – it means that the cancer has been detected very early, the size of the tumor is small, and in all likelihood the cancer is isolated to the breast tissue and has not had a chance to spread into the lymph nodes. Once cancer gets into the lymph nodes it has the potential to spread to any other part of the body. This is why it early detection is so important.

Cancer Moves Fast

Don’t put it off. I think we all have a natural tendency to avoid bad news, and as a result, when we think something might be wrong with us, we procrastinate in getting it checked out. Before we were affected by cancer I had the impression that cancer was a slow-moving disease. This is wrong. Our surgeon informed us that it generally takes 6 months for a cancer to jump from one stage to the next.

There are 5 stages of cancer:

This chart is taken from the National Cancer Institute website: www.cancer.gov

Part I: Diagnosis

My wife figured out something was wrong with her left breast on her own. The breast was just not acting right – the nipple was recessing and she thought she felt a lump. A mammogram was inconclusive but the doctor was cautious and recommended an MRI. The MRI showed suspect cells and a follow-up biopsy was ordered.

This biopsy was one of the worst parts of the experience. Without any anesthesia the nurses injected a huge syringe into the breast in order to extract the infected tissue. When I took my wife home from the biopsy she was white and shaking. They had to give her a valium to get her to calm down. It was a horrible, painful experience for her.

We got the news about a week later. I was home when my wife took the phone call. She hung up the phone and gave me the news and then we both hugged and cried. It is still the scariest day of my life, surgeries included, and I tear up just thinking about it. At least with the surgeries you know they are working on fixing this bad thing. When you get the diagnosis it is like being simultaneously punched in the stomach, kicked in the balls, and bashed over the head with a frying pan, by some invisible foe you didn’t even know was hiding there. I just felt helpless, scared, and confused. I felt like I was falling.

I went back to work that day and I guess I was in a state of shock. I ended up losing equipment and generally just floating around in a virtual haze.

Just to give you an idea of the duration of this process, Trish was diagnosed two and a half years ago. She goes into the final reconstructive surgery a week from today. It will be a three year process at the least before she finally gets back to “normal,” whatever that means anymore.

Part II: Procedures

The first surgery was scheduled quickly, within a couple of weeks. Initially we thought the tumor was very small and that Trish would be undergoing a “lumpectomy.” A lumpectomy is a procedure that is meant to remove the isolated tumor, while leaving the majority of the breast tissue in tact. It is an option for the type of cancer Trish was diagnosed with, the stage 0 Carcinoma in situ. A lumpectomy is good in that it leaves the breast relatively intact and as a result there is no need for major reconstructive surgery. The draw-back of the lumpectomy is that post-operative radiation treatments are necessary in order to insure that the cancer cells have been destroyed and will not spread.

The morning of the surgery the surgeon informed us that he felt like this particular tumor was more amorphous that he had first thought, and that he thought we might consider a mastectomy, as opposed to the lumpectomy. Trish had already decided that if push came to shove she would get the mastectomy. I think part of her rationale behind that decision is that she is a small-breasted woman, and has never been particularly vain about her appearance.

In a way I think being forced to make that decision at the last moment was a blessing. The lumpectomy seems a lot less invasive, and if she’d had to stew for two weeks about getting her breast completely removed, that would have added additional stress. So that morning she decided to have the mastectomy and that afternoon she was down a breast. Unlike most mastectomy patients, Trish came home from the hospital that day.

A mastectomy removes all of the breast tissue. We did not know this until we got home, Trish was all bandaged up, and I called my sister. She is an OB-Gyn working in Vermont. We talked about the operation and I asked her “so does Trish have a nipple?” and she answered “nope.” We just didn’t know, we’d gone in expecting the lumpectomy and returned from the hospital minus one left breast!

Our friends and family were very helpful after this first surgery. People bought by casseroles and dinners. A friend actually organized a rotating schedule so that I didn’t have to worry about putting meals together for the entire first week. People came by with flowers and plants, and to express their heart-felt wishes. It was really nice and their well-wishes helped to ease me through what was a very emotionally trying time. My wife was sick! We had been married seven years at the time, and those years had been fun, and grand, and sure there were ups and downs, but this was serious!

Eventually though even your best friends sort of forget what you’re going through. It’s only natural – we all have busy lives, and unless you are in the thick of it, it’s just really impossible to understand the consistency of suffering and stress that transpires.

The Drain

Yuck, the drain. In a surgery like this, the doctor’s insert a drain that vacuums off excess fluid from the healing wound. My job was to empty the drain into a measured canister and keep records of how much fluid was draining from the wound each day. By charting the diminishing levels of fluid draining, we would know how the wound’s healing was progressing and when the drain could be removed. It is gross. In Trish’s case the drain was removed after about 2 weeks.

The Second Surgery

The Second surgery was scheduled a few months later, and this process was diagnostic – the surgeon was going to remove a series of lymph nodes in order to make sure the cancer had not spread. In Trish’s case he removed all of the lymph nodes surrounding her left breast and leading towards the armpit.

Lymph nodes are fascinating little organs. They exist all throughout the body and they function as a filtration system. The idea is to keep foreign particles isolated; to keep them from spreading from one part of the body to the next. The lymph nodes are a crucial component in the immune system.

My understanding is that the lymph nodes exist in layers – and by dissecting a series of lymph nodes, if cancer had been present, the surgeon would be able to determine just how far into the lymphatic system the cancer had spread and then prescribe post-operative treatment accordingly. In our case the lymph nodes were all clear, the cancer had not spread at all beyond the infected breast tissue.

This was fantastic news, it meant that Trish was cancer free! That was a good day.

But the lymph node dissection was even more invasive than the mastectomy, and the pain and itching of that operation was deeper and more acute. Two years later those scares still bother Trish on a daily basis. In addition Trish got a minor case of “lymphadema.” Due to the absence of the lymph nodes, in rare cases fluid will not drain from the limbs. In Trish’s case her left arm swells – to the point where she cannot wear her wedding rings! That makes me a little sad – but really we just need to get them re-sized. It is an irritating and somewhat embarrassing condition for Trish. There is a sleeve she can wear that compresses the arm, but she doesn’t wear it often. Our surgeon told us Trish was only the second patient he’d ever had who suffered from that condition; just our luck!

Doubling Up

I understand now that the surgeon could have dissected the lymph nodes during the mastectomy. We wish they had. Maybe it would be more painful, but honestly the initial pain of surgery is intense regardless. What is a genuine morale-killer is the continued pain, one surgery after the next. Just when Trish was finally starting to feel half-human, she was under the knife again, and the whole healing process started from scratch.

The reason our surgeon did not remove the lymph nodes during the initial surgery was because he initially assumed the tumor would be contained and isolated. Interestingly, after the surgery he took the tumor to a “tumor board.” This is a whole group of pathologists and surgeons who gather every few weeks to view a collection of different tumors and, as a group, make some recommendations regarding follow-up treatment. Essentially the tumor board acts as a series of “second opinions.” We felt good knowing that this board existed. Unfortunately the tumor board determined that Trish’s particular tumor was atypical, and hence the follow-up lymph node dissection was recommended.

Family Support and Finances

This time Trish’s sister came down for a week. This was extremely helpful to me, because I could get to work. We’re not rich and it just wasn’t possible for me to take a lot of time off of work – particularly with the medical bills starting to come in. Thank God we had insurance through my employer. I honestly don’t know what we would have done if we didn’t. We would have had to sell our house, and we’d still owe more on top of that. We probably would have had to move in with my mom or something – ugh! (No offense to my mom, she wouldn’t be thrilled about her 35 year old son moving back into the house either!)

From my point of view the removal of the lymph nodes was worse than the mastectomy – but this could have had everything to do with Trish still being worn out from the first surgery. Plus for the mastectomy we were both so full of adrenaline and also still in a quasi state of shock that it went by in a blur. After that it has been a long, brutal slog to the point where we are now.

Re-Construction

Trish spent the better part of a year healing after the first two surgeries. Like I mentioned before, she is small-breasted and not particularly vain, but she still was very self-conscious about her body and the absence of her left breast. She is relatively young, in her forties, and decided to go through with the re-construction and insertion of an implant. Also, she did try wearing a “falsie,” but these are uncomfortable and cumbersome. Ultimately she decided she did not want the constant reminder that she had essentially been mutilated; her body was asymmetrical, lopsided. She found herself always wearing baggy shirts or sweaters, and hunching over in order to hide her figure. She told me several times she “just wanted to wear a t-shirt.”

Re-constructive surgery made the most sense for us.

Part III. The Tissue Expander

The first step of re-construction is another surgery in order to insert a “tissue expander” under the muscle in the chest, where the breast would be. The tissue expander would be a great device if one were trying to torture someone. It is a relatively hard package with silicone in it that is designed with a small nipple in it where a needle can be injected in order to add more silicone to it. The idea is to inflate the device and expand the tissue until a capsule forms that is slightly larger than the implant which eventually be inserted.

We went through a third invasive surgery and all that involves. This time we were essentially on our own. If I recall I ended up using all the vacation I had accumulated to be there with Trish while she for through the worst of it.

Tripling Up

We learned after the fact that the tissue expander can also be inserted during the initial mastectomy. Essentially all three of the surgeries Trish has gone through could have been done at once. Trish would recommend this because, as I mentioned before, the recovery is the brutal part, and repeated surgery just grinds the body and the psyche down. Had we known, we would have insisted on getting this all done at once. Trish was a good candidate for this triple procedure due to the fact that the cancer had been diagnosed so early – before it could progress.

Note on re-construction or irradiated skin…

My understanding is that irradiated skin cannot be re-constructed! Our plastic surgeon told us when he was younger he had tried, and failed to reconstruct irradiated skin, or tissue that had been exposed to radiation. This is something to ask about when choosing between a lumpectomy and a mastectomy – a lumpectomy will typically also involve follow-up radiation treatments.

Part IV. The Future

As of this writing my wife is scheduled for the final surgery, the one in which they will remove the tissue expander and replace it with a silicone implant. She had the choice between silicone or saline. The silicone worried her because of a lot of horror stories from the past; but our plastic surgeon has reassured us that the technology has come a long way and the silicone implants, even if they do rupture, will not leak into the body. He also told us that the silicone was much softer and natural feeling.

The Fear

Right now the biggest stress in Trish’s mind is not the surgery – it is what the surgery will result in. She has been in constant pain as a result of the tissue expander and the scars from the various surgeries. They itch, they burn; if she uses her arms they ache and hurt. Her concern is” “What if this surgery doesn’t alleviate some of this pain and discomfort?” Is she going to live out her life in chronic pain? I honestly don’t know. Doctors tend to hedge their answers, likely because there are so many variables.

Some Notes on Psychology and Relationship

This process is incredible. It is taxing, damaging, hurtful and scary. Invariably it will alter your relationship with your partner. Right now I don’t know what is going to happen with us. For the last two and a half years our relationship has shifted from partners and lovers to a relationship of caretaker and patient. I have been resentful at times. We’ve both been angry at times. I’ve never seen my wife so angry. She is not generally prone to anger, but at times during this process I have seen her throw chairs and glasses around.

I guess anger and helplessness, fear and confusion are natural emotions that one could expect to fear during a process like this. But what I was absolutely not prepared for, and the emotion that probably hits me hardest and with the most frequency, is loneliness. I have never felt so alone as I have felt during this process.

I’m not sure if Trish feels this – she has been the one battling. I think that is where this loneliness stems from. She teams with doctors and nurses, she has friends and co-workers who have been through what she’s going through. I sit in the waiting room holding her bag of clothes. All I can do is try and help as much as I can, but it just doesn’t fell like much. I’m not a doctor or a nurse, I’ve never been through what she is going through. It hurts to feel so utterly powerless and alone.

I am sure this cancer leads to affairs. It hasn’t on my part, probably as much due to circumstance as anything else. I don’t go out much or see too many people. Trish and my sex life has naturally diminished, as one might expect. Also the cancer has created distance between us, it’s fostered that tremendous sense of loneliness in me. The distance just seems to grow.

My hope is that after this final surgery and after she has a chance to feel human again maybe we can get into some counseling and work through some of this emotional stuff and try and re-acquire the love and affection we once had. I honestly don’t know what is going to happen though. I really don’t. I get really scared thinking about it, and it makes me want to cry.

We’ve both lost something from this process. Maybe in time our going through this together will bring us closer together. Maybe in 10 years we’ll look back on it and smile, holding hands by a warm fireplace; or maybe not. The future remains to be seen.

Final Thoughts

If we had to go through this again, knowing what we know now, I think we would try and find a third party to act as an advocate – to ask the questions and do the research we failed to do. We were in shock for the first month, when a lot of important decisions need to be made. I dropped balls, I lost information. It was so much just to keep moving that I just failed to take care of a lot of little details I should have minded.

Also I would get into counseling immediately if it were up to me. I think we felt particularly isolated because we didn’t take advantage of some of the support groups and therapy that is available. There is no reason to feel isolated. Like I wrote earlier – 1 in 8 women go through this. Reach out to people and let them know you need help. I think our pride may have interfered with our getting through this as well as we could.

Overall though I think we’ve done okay. We haven’t completely melted down yet and we’re seeing the light at the end of the tunnel. Our finances are a wreck – all our savings is gone and the equity in our house is stretched pretty thin – and we have good insurance! Still, once you factor in the premiums we pay and the medical costs the insurance doesn’t cover, we’ve been forking over about $10 grand a year for the last three years. That’s a solid third of our take-home income, so that hurts badly.

I think we have better than even chances of working out our relationship and getting back to some semblance of “normal” in the future. But it has been a tough, tough thing to go through.

I hope people don’t under-estimate the stakes and the intensity of even “minor” cancer. In my opinion there is no such thing. If you are going through this lean on every available resource: your family, your church, your colleagues and friends. You are going to need to marshal every available resource, physical and spiritual, in order to deal with this. It is no walk in the park, but you can get through it.

If you are going through cancer my thoughts and prayers are with you and your loved ones and I wish you the best of luck and fortune.