Tell me about cancer, because I don’t know what it’s like.

Saturday, October 2nd, 2010

A couple of weeks ago I sent out a twitter that said, simply, fuck cancer.

I added a brief end note to a post that same day explaining that someone close to us had been diagnosed.

That may be the understatement of the year.

Jared’s mom was diagnosed with breast cancer.

I didn’t mention the details anywhere online because she is a very private person.  My father-in-law actually emailed me and asked me “not to talk about it too much” until they’d had some time to process it.  I live 1400 miles away, so I think it’s safe to assume that he might have meant “Jesus, God, woman don’t talk about this on your Internet stuff.”  I didn’t “talk about it too much”, of course.

But I’m talking about it now, because I need you to talk about it.

She lad a lumpectomy last week.  The cancer was supposed to be small and non-invasive and easily removed with one surgery.  Unfortunately, the lumpectomy revealed that the cancer – although still considered “non-invasive” – was more extensive than everyone had thought.

She has to have a mastectomy.

That’s about all she knows for sure right now.  She’s been told to have at least one breast removed.  She’s also been told she has other options.   In fact, she’s been given several options with potential pros and cons for each.  Unfortunately, no doctor or husband or son or  cancer-free daughter-in-law can tell her which option to choose.

She can have a double mastectomy.

She can have reconstructive surgery at the same time she has the mastectomy.  Of course, if she does that, she’ll need to wait several weeks in order to have the surgery because adding a plastic surgeon to the mix makes scheduling things a little more difficult.

She can have one breast removed on Thursday, getting rid of what they know is there as quickly as possible.  And if she does that, she can schedule more surgeries several months down the road – more surgeries, more recovery, different types of surgeries and potential outcomes.

She can elect not to have reconstructive surgery at all.  She’s been told to consider how her clothes would “hang”.  Isn’t it strange how quickly our breasts become clothes hangers to the rest of the world?  We spend decades being told that the size and shape and ability to defy gravity of our breasts signify beauty and youth and womanliness; and in the blink of an eye another woman is telling us to think about the way our clothes will hang.  We’re supposed to be practical and make lists of pros and cons and decide if we should remove one breast or two and do it in six days or 4 weeks and live without breasts for hours or months or forever.

How the hell does a woman make that decision on her own?

And how in the hell does she make it with anyone else?  How can someone else talk to her about her breasts as if they are simply body parts?  How can we discuss a part of her that has defined, to a certain extent, who she is in terms of risk factors and procedures?  How in the hell do anyone of us pretend to know what she is going through or offer her any kind of insight that can help?

We can’t.  Not really.  The doctor can give her the facts and those of us who love her can lend her a shoulder and an ear.  But we can’t tell her what it will be like.

We can’t tell her how it feels to live without breasts.  We can’t tell her what recovering from surgery is like or what reconstruction feels like or what the difference is between one God-made breast and one man-made breast.  We can’t tell her what it’s like to look in the mirror and see something dangerous where something alluring used to be.

We can’t.

I can’t.

But maybe you can.  Maybe you or someone you know has lived this nightmare or made these decisions.  Maybe someone who can share would be willing to, even though you don’t know this woman or her husband or her children or her grandchildren.

I want to take this decision from her, and I can’t.  I want to give her insight, and I can’t.

I’m asking you to if you can.

If you or someone you know can share your story, can tell her the things a doctor cannot, please leave them in the comments or email them to me so that I can pass them along to her.  My email address is brittmariereints at gmail dot com.  I will forward your emails to her and she may or may not contact you.  She is, as I said, an extremely private person – but she doesn’t know anyone who has gone through this.  I don’t know if she would feel comfortable talking to a stranger – even a stranger who shared their most private stories – but even just hearing them, and having the option to ask questions, might help.

This is all I can do for her.

If you can do more, please do.

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  1. jodifur says:

    I’m so sorry.

  2. jonniker says:

    First of all, I’m so sorry Britt.

    Secondly, talk to Lisa Adams –@adamslisa on twitter or lisabonchekadams.com. I don’t know the entire details of her ordeal, but I know she’s vocal about it, I know she’s willing to talk about it, and I know she’s nice and funny and kind.

  3. Finn says:

    I’ll keep your mother-in-law in my prayers.

  4. Lisa Adams says:

    Hi… a friend tweeted me and said “this is a job for you”– she was right.

    First, let me know if she has access to the internet and would read posts online? I have blogged extensively about aspects of my cancer and decision-making. I am one of those people that everyone feels comfortable talking to. My diagnosis is discussed on my blog (in the “about” section). I originally was told I needed a mastectomy for extensive DCIS. It turned out from pathology done after a double mastectomy that I had 2 tiny tumors not visible on mammogram. I had stage 2 invasive ductal carcinoma with one lymph node positive. I was 37 at diagnosis, had double mastectomy, 8 rounds chemo, and then an oophorectomy (ovary removal).

    I have written about losing my hair, my breasts, my sanity at times. I am willing to answer ANYTHING about any stage of my surgeries and reconstruction (I had tissue expanders placed, then siclicone implants). I didn’t know anyone who had had these surgeries when I had them 3 years ago, and would do what I can to help her make decisions and gain information and insight.

    Feel free to browse my site http://www.lisabonchekadams.com and she can email me with any and all questions she (or you, as a supporter) might have.
    It’s a very scary and overwhelming time for the whole family, and I wish her the best as she enters this difficult time both physically and emotionally.

    I find that most people are private about this, but really are scared, and do need information. Hopefully she will be brave enough, with your help, to reach out to some of us who can help.

  5. Fluffycat says:

    Very sorry to hear about your mother-in-law, Britt.

    My mom had breast cancer and has been in remission for five years. She had a very fast growing form so she had a lumpectomy and chemo and radiation as well. I think the best advice she got was not from doctors but from a support group she joined. I don’t know exactly how she found the support group, but I would recommend that as a good idea for your mother-in-law. Being around others who have gone through it will help emotionally, and they also have good medical advice on what to ask your doctor, etc.

  6. peach says:

    well i can’t weigh in too much but i will say i had a scare last year with a huge lump (at age of 25). luckily when sent to pathology it was found benign (for which i am still thankful), before i knew it was benign i was forced to think about decisions like your mother in law is going through. i thought about reconstruction and still do, i personally would have gone with reconstruction had a masectomy been needed as i feel breasts are part of a woman’s identity. however, i do know a couple of women who chose not to have reconstruction and they felt it an empowering decision as a symbol of their survival. either way, best of luck to your mother in law, keep on fighting!!!

  7. Caro says:

    I will ask my mom to send an email, as she had a mastectomy and chose not to have reconstructive surgery. I can only share my own thoughts and feelings, as it is her story and not mine.

    But I have to say that your words made me feel less alone. Our breasts are a distinct part of our femininity, and to think of my mom losing a part of that (she only had a single mastectomy) was hard, to say the least. I had to grieve over this, and I was angry at my mom as well as scared and sad for a time.

    Now, five years later, I am so grateful that she made a decision that was right for her. In her case the cancer had not spread; she needed no chemotherapy but does take a pill every day.

  8. Jill says:

    Cancer does suck. And I know no one it hasn’t affected. But maybe I can help. My bff’s mom died when we were 13. A few years ago, my bff and her sister were diagnosed with the BRCA1 gene. This meant a double mastectomy, and later this year, she was have her uterus out.

    She’s not yet 35.

    I went to stay with her for a few days after the double mastectomy and I won’t lie – she was in pain and it was no picnic. But she got through it, has the cutest little boobs now (that’s the silver lining – at least for her), and she knows she has a much better chance at being around for a long time to come, an option her mom didn’t have.

    It’s a shitty, sucky, piece-of-crap thing to happen. But having options is really fortunate, even if the options seems glum right now.

  9. Christine says:

    I’m so very, very sorry.
    I’m going to forward this to anyone that I think might be able to help…

  10. Nyt says:

    I’ve got nothing but a prayer, and two-cents from a dear friend who is a retired plastic surgeon. No matter what the choice, seriously consider have a plastic surgeon close. These doctors are skilled at minimizing scarring which in turn may make the psychological side of this surgery just a tiny bit kinder.

  11. Nat says:

    One of my favourite bloggers ever is living with metastactic breast cancer. She’s organized a team for Run for the Cure. (She has a mastectomy and hasn’t have reconstructive surgery.) She might have some insights to share.

    http://notjustaboutcancer.blogspot.com/

  12. Michelle says:

    Never been touched by breast cancer, but my mom passed from pancreatic cancer and my dad went the following year from cancer, as well.

    Knowing that she has the love and support of her friends and family will help her greatly.

    Also, as said above, having options is at least a plus. Do a visual list of pros and cons – maybe that might help the decision.

    I’m sending much good mojo to you and her in dealing with this.

  13. Alan Labovitz says:

    First, I don’t have breasts so I can’t add much there but I am a prostate cancer survivor. There must be a support group in your mother-in-law’s area. I am on the steering committee of our prostate cancer support where I live and one of the best things about this is there are many who have been through most of the procedures you mentioned. I would suggest she contact the American Cancer Society in her area for information and for the name and location and contact person(s) for a support group. I hope this also adds some help for a very emotional and scary thing to go through.

  14. Alan Labovitz says:

    I just went online again and found a website which can help find support groups in your mother-in-law’s area. http://www.breastcancer.org/questions/support.jsp

  15. charlene says:

    so sorry to hear about your mother in law~i had a double preventive mastectomy when i was 37~i had the breast cancer gene~and i did not have reconstruction~in 95 reconstruction was several surgeries(over about 18 months)and they might could get to me an A cup~so i just have several different pairs in several different sizes~my mom was DX the following year~they removed her breast on the table and she has wished many times she had had the other one removed also~she didn’t have reconstruction either~
    i worked for several years with a program that helped young women who had been dx with breast cancer~in my experience, most who had reconstruction would not do it again~many did not understand the risks, the additional surgeries, the additional scarring~
    your mother in law can get a lot of info from the susan komen foundation and Dr. susan love’s breast book is one of the best books out there~it was my “bible” during the years before i had my surgery. I’m sure you can find it at amazon~or you could order it through her website http://www.dslrf.org/

    my mother has to go through additional stress every year with her remaining breast~she was checked for the cancer gene (if she had it her insurance would have paid for the breast to be removed)~but she didn’t have the gene {i got mine from my dad’s mom}

    the women that i worked with who had double mastectomies were glad they had it~it removes liked 95% of the chance of the breast cancer occurring again

    may hospitals have “breast buddies” or some similar program where your MIL could be put in touch with other women who have been there, done that~and they will also furnish wigs{for chemo} and breast prosthesis

    feel free to send my email to your MIL~and if you have any questions, please email me

  16. Bre says:

    I’ll be praying for her, Britt. That’s something I can do…

  17. Avitable says:

    I wish I had something more to offer other than to say that my thoughts are with her and that I’m so sorry to hear that it’s more extensive than previously thought.

  18. I’m with you — fuck cancer.

    However, my grandmother is a breast cancer survivor. They caught it early enough — like your mother-in-law — that she was able to beat it. She didn’t have to have a mastectomy, so I have no idea what it’s like to make that decision, but I do know what it’s like to see her still here today.

    I do know one person who had a mastectomy, though. Mike’s mom’s best friend did, and I had no idea at all until Mike mentioned it one day.

    I don’t know if this helps. I guess what I’m trying to say is, she’s going to be okay, and if she does get the implant, it’s very natural looking.

    I’m here for you.

    xoxo

  19. Pgoodness says:

    I’m sorry. Mine was in my leg, so no advice about that part. It’s a decision that will be horribly difficult, I’m sure.

    Xo

  20. I have no words of experience or know of anyone who does.

    I hope she and you find the advice and answers she needs.

    And much love to her and your entire family.

  21. annettek says:

    I’m so sorry Britt. My aunt had breast cancer and a double mastectomy over 20 years ago now. She’s living proof that there is always hope. Sending love, hugs, and good thoughts to your whole family.

  22. Becca says:

    I don’t know, we went through this last June with my Dad. The decisions we made were hard and it sucked, and in the end my Dad is gone so no one probably wants to talk to me about it. My prayers and thoughts are with you all.

  23. Lisa says:

    I don’t have any experience with breast cancer, nor do I have any resources to help. But I will keep her, Jared, and your family in my thoughts. Love to your family.

  24. Lynne says:

    One piece of advice that may help with the decision making: have your MIL and FIL take written notes during office visits, or better yet, take a tape recorder. It’s so hard to process what you’re hearing during the office visits due to the high level of stress. It helps to be able to refer to notes or re-listen to what you heard. All the various options become confusing – weighing the risks versus the benefits is sometimes easier when you can spend time considering what’s going on.

    Again, like many others have said, the Susan B. Komen Foundation is a wealth of information and support, as is the American Cancer Society. Generally, most cancer centers have breast cancer support groups and provide resources for wigs (if needed) as well as referrals for other types of support.

    If there is someone in the family who is willing to handle all the bills – comparing what is being billed to what the insurance paid, this is usually much appreciated since the volume of bills and receipts can be overwhelming, not to mention stressful for the patient and family. Often providers will bill you before the insurance has a chance to make the payment and this is stressful, confusing and adds to the burden of recovery.

    Prayers to your MIL and the rest of the family.

  25. Heather says:

    I am so sorry Britt. I will keep her in my thoughts & prayers. I don’t know a lot but I will be hoping that the decision she makes brings her peace.

  26. kitzel says:

    My mother had the same problem in 1980… I was 10years old.
    All she thought about was: what can give me the chance to live longer? to survive was for her much more important than have her breast, looking good in her clothes. Mastectomy.

    She was beautiful, really. looked like Anita Hekberg in “la dolce vita”… to live as longer as possible that’s what she wanted to.

    tell her to think about life, no matter of a part of the body.

  27. Kelley says:

    Oh sweetie.

    Such a scary diagnosis. I know.

    She sounds very similar to my Mum. One day she found a lump and two weeks later she had a mastectomy. Thankfully the got the whole thing (even though it was growing fast) and didn’t need to have chemotherapy.

    My mum chose to have the breast removed and to wear a prosthesis and then went for re-constructive surgery a year or so later. She went for the tummy tuck convert it into a breast option. She was going to have a nipple tattooed on but decided she didn’t need it.

    Hope this helps somewhat. Sending all my love to you all.

  28. Headless Mom says:

    A friend of mine went through this last year. She only ‘needed’ to have one removed, but she and her husband opted to have both removed. When they were talking to the surgeon the husband told him “You can take her breasts, but don’t touch her ass. Her ass is mine.” They had a pretty healthy attitude about all of it, I thought. Hey, you can live without breasts, right? She is doing fantastic now, no breasts, no reconstruction and is back to bowling with us every Tuesday.

    I also have an aunt that did double, with reconstruction (tummy tuck, ftw!) about 15 years ago. She figured if they were going to be in there anyway….

    I don’t mean to sound flip about all of this. It’s serious and scary business, but I’ve also watched the other side. My daughter’s grandmother only had a lumpectomy (with a long family history of bc,) and she passed away a few years later. Very sad when they could have (potentially) prevented it from coming back by having a double.

    Love you, girl. I hope people’s stories can help you and her, and the whole family!

    xoxo

  29. Raven says:

    I have a very close friend that had one of her breasts removed because of cancer. She then went to work in a store that sells prosthesis and wigs for women. She hasn’t had the reconstructive surgery yet but wears a prosthesis every day to help her clothes “hang properly” and honestly (per her) it’s no different than the thousands of woman that wear padded bras or silicone cutlets to make up for the smallish breasts they already have. She was tested for the gene to see what her chances were of the cancer returning or spreading and weighed that against removing the other breast. She also went through a full round of chemo and radiation.

    My husband’s grandmother also had one of her breasts removed but she never wore a prosthesis in the 26 years after her surgery. She did wear a wig after she lost all of her hair due to lung cancer, which she ended up with later in life.

    Finally, *HUG* I wish you and yours lots of love and healing. I know how hard this is and I’m here for you if you need an ear.

  30. Steven H says:

    This is why support groups can be so crucial during these times of distress. It surrounds you among people who have gone through something similar, it gives you someone to talk to who might actually understand your subjective experience.

    I wish you and your family the best of luck!

  31. steen says:

    No matter what she winds up choosing, I wish her nothing but the best and all the love and strength she will need. Watching a family member struggle with cancer is hard; there are no comforting words, no empty phrases to make it better. I’ll be thinking of you and your family, Britt.

  32. bz says:

    please let her know about this site.
    Message boards aplenty.
    Been through this- went from stage 0/1 to stage 3a in zero to sixty.
    sucked at 35.
    http://www.youngsurvival.org/

  33. Marni says:

    I don’t have anything to offer but I wanted to send my good wishes and tell you this post was beautiful.

  34. DemMom says:

    I’m so sorry, for your mother in law and your whole family. I’m not sure if I should or can talk about this subject, as we’re in the middle of it as well, with my mom. I may get up the courage to write the whole story down one of these days.

  35. Rachael says:

    I don’t have answers, but am so very, very sorry.

  36. muskrat says:

    My paternal grandmother had a double, and it kept her alive for several more decades.

  37. corrin says:

    I’ll be thinking about you and your family.

    Cancer does suck. I’m about to loose my 3rd grandparent to it.

  38. Monica says:

    My mom had breast cancer, and died from it 2 1/2 years ago. I’m not saying that in anyway to scare you. Trust me, it took me a long time to be even able to type that without bursting into tears.

    She discovered a lump and had a mastectomy. 11 of her 20 lymph nodes were infected as well. It was at stage 3 when she was diagnosed so we knew it wasn’t the best of scenarios. She underwent 3 months of chemo followed by 2 months of radiation and it didn’t return for 2 years. Actually, it returned right after she had a checkup with her oncologist who gave her a big thumbs up. 3 months later she passed away – it had spread to her liver.

    After her mastectomy, she opted not to have reconstructive surgery. Her surgeon had told her the recovery process alone for reconstructive surgery was 6 weeks, and on top of the chemo and radiation that was planned, it seemed too much. She did have a prosthetic breast made that she wore in a specially designed bra. She wore it if she was going out, if people were around, etc. but at home, where no one would see her, she didn’t wear it. I know she complained of it feeling awkward. Although surprisingly the look of it was very real.

    My biggest suggestion: take notes at every doctors appointment they go to. It’s an overwhelming amount of information. Have them email those notes to you too – sometimes people interpret the same information differently and can raise additional questions, etc. Look at online message boards. I found the breastcancer.org site very helpful and the women on there amazing.

    Through everything, my mom remained positive and I really do think that had a lot to do with her dealing with it for 2 1/2 years. I will be thinking of you.

  39. Loukia says:

    I’m so, so sorry. Cancer does suck. I could tell you all the ways it has affected my life and the loved ones in my life, but instead I’ll just say that if it were me fighting breast cancer I’d do whatever I could to be completely cancer free, even if meant removing both breasts. And I would do it quickly. I’d do whatever I could to stay alive as long as possible.

  40. Cassie says:

    Fuck cancer.

    I will ask my mom and step-mom to email. They are both survivors. My mom chose not to have them removed, my step-mom had one taken. I’m so sorry. Sending huge hugs. I will be thinking about you guys.

    oxox

  41. Nina says:

    It’s been nine years since I was first diagnosed. I had a lumpectomy, then a mastectomy and reconstruction (Tram Flap). I wish you and your family strength and patience, as it is a family disease. One of the most important things to remember when fighting this, is to keep a positive attitude.

    I’m a very private person as well. I never even told my closest friends for over a year. But I now realize that it wasn’t the best thing to do.

    I’ve just begun to blog about this journey, turning my visual blog into a sometimes general rant. It was important to me to highlight the evolution of the disease. It’s not just about eating properly or sleeping well or social status. It’s about the stress, and the emotional black holes, we find ourselves in that can often lead to this disease.

    My very best wishes and hugs for your MIL’s return to health!

  42. I’m going for a mammogram on Monday as I have a very painful lump in my right breast. I have several friends who have been diagnosed with different cancers, some of them made it and some didn’t. It sucks big time! My thoughts are with you and your family. xx

  43. DeAnna Wry says:

    Cancer does suck! I lost one grandmother to non-Hodgkins lymphoma (cancer), she fought for almost 6 years. She changed everything about her lifestyle after she was diagnosed..started eating healthy, started exercising more. Even though she lost her fight, she was able to prolong her life by putting up one hell of a fight. My other grandmother has had cancer 4 times and is still kicking. She has always been a super healthy, active person.

    I guess my advice to your mom-in-law is fight, and fight like you’ve never fought before. And lean on those who love you for support, that is what they are there for. You will never be a burden to them.

    My thoughts and prayers are with you and your family. Cancer is something that too many lives are touched by. And it is something that should never be brushed under the rug or hidden. Cancer needs to be talked about, people need to be aware that there are so many things that they can do to detect it early, to prevent it and to fight it.

  44. Windy says:

    Cancer sucks. It’s strange, but you feel GUILTY for having cancer. Crazy and f’d up, right? You do, though. I had cervical cancer. I was 25. I’d been engaged for two months after spending some time saying I’d never get married or have children of my own. I then found myself facing the fact that I might not be able to have children. Suddenly, I cried over the loss of these little people that I never thought I wanted. This is how I told my family (my fiance already knew and was present). “Daddy, I have cancer. Can you pass the peas, please?”. Yeah, you can imagine how well that went over. My family was shocked. My fiance was angry. My response to him was, “Is there a GOOD way to tell my family that I might be dying?” That shut him up. What’s really amazing is how other people just don’t know how to act around you. YOU wind up taking care of them, being careful of them, having to comfort them. It’s like stepping through the looking glass. I had nurses hold my hand and tell me I could adopt. I had one who told me, “Well, that’s what you get for sleeping around.” Not that it matters, but at the time, I had only had 5 partners my whole life. Also, that wasn’t the type of cervical cancer that I had. I was in a very unlucky group. Less than 20% of cervical cancers, at that time, were NOT caused by HPV. I was in that less than 20%. I have always had to be different. There’s an idea floating around that the type of cancer I had is seen with much more frequency in women who have been on hormone therapies for more than five years. I’m ten years past my diagnosis. I’ve had three healthy boys with no complications. I will NEVER be able to say, though, that I am cancer free. I have to live my life with the feeling that my body has betrayed me. I celebrated big time when I was finally able to go on the yearly schedule that most other women are on. Still, any time I have a PAP, there’s a certain amount of breath holding that occurs. After I delivered my second son, my doctor had a new nurse. Because of my background, my doctor’s nurse will leave a message on my machine, if I don’t answer, letting me know that my results were normal. I love this! The new nurse didn’t know the drill. Instead of the expected, “Hi, Windy! Your results are normal! Enjoy that precious boy!” that I expected, what I got was, “This is Dr. Levitt’s office, please have Windy Greenway call our office as soon as she is able for some important information.” I almost hyperventilated! When I spoke to one of the other nurses when I called, she was surprised to hear from me. Everything was fine. I burst into tears. When my friend, Rhonni, got her breast cancer diagnosis, she felt horrible, not just for herself, but for her family, as well. She told me, “I wasn’t just telling my sister that I might die. I was telling her that, now, she might, too.” Again, cancer sucks!

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