Do not judge my choice of treatment (Warning: this is a ranting post)

It is a fact: we live in a society where everyone feels they need to have an opinion; but in many situations people don’t know what they are talking about. They repeat what they hear without questioning the information or act out of their emotions without considering the other person’s feelings.

opinion

Image courtesy of wikiHow

When I was diagnosed with breast cancer, I had no idea what I would be dealing with. I knew I needed chemo because of my young age — my cancer was grade 3 and invasive. My doctors explained my options as far as treatments go. For surgery, I could have had a lumpectomy, which would have meant radiation was part of that plan, or I could have had a mastectomy, which would have excluded the radiation. I needed chemo no matter what. Now, when my surgeon explained the benefits of each surgery, he clearly stated that it didn’t make a difference with my current cancer which surgery I went with because there would always be a chance my existing cancer could come back. However, removing my breasts could have drastically lower the risk of getting a NEW cancer (breast cancer is not only one disease but multiple diseases).

I felt overwhelmed with the amount of information I received. I was also scared. You would think that with my family history of cancers I would be able to handle the situation better, right? NO WAY! Truth is, you never know how you’re going to handle it until you are faced with it. I also had some ideas on how bad it could get due to breast cancer deaths in my family, so that added more tension to my situation.

Anyways, I opted to have a lumpectomy with chemo and radiation because that was the best option for me at the time. It is a very personal choice what type of surgery to get, and I shouldn’t have to feel pressured by people who aren’t doctors — but who can’t help expressing those opinions — to explain why I made the decisions I did.

I’ve been told by more than one person that if it was them going through breast cancer, they would have had a mastectomy. Someone even asked why I didn’t remove my breasts. After all, they are only breasts. I hate it when cancer turns into gossip. To me, that was very insensitive and unhelpful.

I told this girl that she would never know how she would react if she was facing cancer until she actually does. I also told her I didn’t appreciate her judging how I choose to treat my cancer. The girl didn’t speak to me for months after this conversation because she felt “offended.”

???

Am I missing something?

This girl is not a close friend. What gives her the right to question my choices? And how is that comment supposed to help me? Does she expect me to call my surgeon the next day and tell him to get the anesthesia ready, that I am coming over for more surgery, because “someone” said I originally did the wrong thing? Is that supposed to make me feel better about my situation?

Come on people, have some empathy! You don’t have to always say something. But if you do, be kind.

I guess if I have to face cancer again, these people would probably have another discussion about how I didn’t listen.

I try not to be hard on myself. I have no regrets about having a lumpectomy, even if I may feel differently down the line. It was what I was able to handle. Now I have more knowledge than when I was sitting in my surgeon’s office discussing my treatment options. I did what I felt most comfortably doing at the time. I don’t know what my next choice would be if I ever have to face another cancer, but I trust myself to make the right decision for ME.

Same goes for chemo. Although I haven’t received many comments about that, I have heard people say there are “better options” than chemo. Well, if you think there is something better than chemo to treat your cancer and that’s the route you want to take, good for you! That’s your personal choice and I would never tell you you’re doing things the wrong way. I would only give you my personal opinion if I am invited to speak. I expect the same from others — especially those who aren’t my close friends and family. I do welcome advice from other breast cancer patients.

Each patient decides what the best choices are for them with the help of their doctors, who are actually experts in the subject. One thing you can do to help is to hold their hand in the process, without judging their decisions or questioning their behavior.

Also, think before you speak. Or just don’t speak.

Has anyone judged your choices of cancer treatment?

About thesmallc

I'm Rebeca. I was diagnosed with breast cancer at the age of 32. But there's more to my story: I am an animal lover. I love to cook. I have a wonderful fiancé who doesn't mind walking my rocky path with me. We currently live in New York. ---------------------------------------- “Those who have a 'why' to live, can bear with almost any 'how'.” ― Viktor E. Frankl
This entry was posted in Coping after cancer, Support. Bookmark the permalink.

39 Responses to Do not judge my choice of treatment (Warning: this is a ranting post)

  1. http:www.carla-burke.blogspot.com says:

    No one has judged my cancer treatment. I have found people to be extremely interested to what happened to me. I chose to have a double mastectomy. It was the best decision for me because I don’t ever want to have a mammogram again. I will go through Tamoxifen treatment for the next 10 years. Thank God no one has judged me because I would get angry.

    • thesmallc says:

      I am glad you didn’t experience any judgmental comments. I totally understand about not wanting to get a mammo again. I have to admit, that’s one thing I struggle with, getting these scans done every year (both MRI and mammo). I am sure your choice of surgery alleviated some level of anxiety. Stay well! And thank you for commenting on this post.

      • shawnacarr says:

        I just read this again and have to say this was very well written. I agree that it is a very personal decision that each of us pink sisters has to make. And if you haven’t been diagnosed with breast cancer then as far as I’m concerned you can’t have an opinion. You really have to walk in our shoes and feel how scared we are to even come close to giving us an opinion.

  2. Nicole says:

    Not on my treatment decisions but at times it seemed a parent at children’s school often would stare in disbelief because I didn’t appear to be the stereotypical cancer patient. She also became one of those one who didn’t know what to say and ultimately our friendship ended. I didn’t do chemo and every time I saw she would just stare at me and pretty say the same thing and it seemed almost like she questioning if I had breast cancer! Cancer truly makes people do strange things!

    • thesmallc says:

      Nicole, cancer sure makes people do strange things! I believe most people who have not experienced cancer aren’t educated enough about the disease. They learn about it when a cancer diagnosis forces them to. This is one reason why we get such a mix of reactions. And yes, cancer separates people. Thank God we have each other for support!

      Stay well and thanks for your comment.

      • Nicole says:

        I am really appreciative of your post, it gave me a lot to think about. Plus I learned a lot from the responses to your post as well. Too often I have wallowed because others weird responses or just disappearing all together. But I have a lot to be thankful for and I have a good support system plus I have made new breast cancer friends who empower and support. I wish you all the best on your journey! Take care, Nicole

  3. Very true that no one knows what they’ll do until they actually face a situation, yet this rarely seems to stop them from uttering, “if I had ___, I would___.” Drives me nuts. Luckily I didn’t run into it much IRL, but ran into it a bit later online. Shudder. Great post!😃

    • thesmallc says:

      Wendi, I think it may be more common for such comments to appear online. The internet gives us more freedom to communicate without worrying about a physical confrontation. I try to ignore reading online threads because they drive me crazy — very hard to do. However, I am a lot more open with my blog. Thank you for commenting and for your support.

  4. Scott Johnson says:

    No questions from people I know about choices, guess because there really weren’t really options for my cancer. What I found upsetting was how the doctors and staff made me feel undeserving of treatment based on my being extremely sick and disorientated after the first infusion. Sure didn’t expect the medical people to abandon me. Like Nicole said, people do strange things.

    • thesmallc says:

      Scott, I am glad you haven’t received judgmental comments from people outside your hospital. I am sorry your medical team has made you feel isolated and abandoned, in a way. I hope your days have been easier, now that you have a slightly different situation (what I remember from your last post). Please keep us posted on how things go and hang in there!

  5. I totally agree! I was almost 56 when diagnosed, but had a grade 3 tumor too. Went through lumpectomy, chemo, rads and now 4 of 10 years down on arimidex. I am happy with my choice, it was the best thing for me. Early on, people asked why I didn’t have a double mastectomy, but I said I wasn’t into unnecessary surgery. For me, it was. I’ll face future decisions if and when. I am convinced that there is so much fear about getting breast cancer that people are more than usually nosy and judgmental because of their own fears and anxiety. That’s not an excuse for bad behavior, so we have to keep talking. Until you’re faced with the decision, you don’t know what you might choose. My mother died of breast cancer at 65. I always thought I might have a double mastectomy, but in the end I chose differently. Anyway, wishing you all the best.

    • thesmallc says:

      I am sorry about your mom.

      I didn’t know people are now taking arimidex for 10 years, like Tamoxifen (Fun NOT). I hope you are tolerating it OK. You’re right when you say people’s reactions are a reflection of their own fears. I guess we have to continue to educate and speak up when things like this happen so they don’t do it to other patients. The problem is, no one really wants to know about cancer until they have to face it. I wish there was more education about the disease but we also need people to be interested in learning about it.

      Stay well and thanks for your comment.

  6. Gwen says:

    It happened to me, I was told what someone else did in my situation and they asked if I had Chemo, when I say no, they don’t seem interested and then I have to give a little knowledge on breast cancer treatment.

    • thesmallc says:

      Gwen, I am sorry you’ve experienced this as well. We, the patients, seem to be the appropriate group of people who are willing to educate about the disease. I hope everyone speaks up but I do understand why in many cases we choose to ignore. Thank you for commenting on this post.

  7. Erica says:

    YES!!!! I’ve heard that as well,”if it was ME I’d get them both removed!!” That is so rude!!!

    I’ve also been told, by more then one person, “if it was me I’d opt to get ride of both of them”

    Also:

    I’m glad you have breast cancer because it’s curable” people rarely die from it anymore”. This was day 3 of my first chemo, and if never felt worse and I was like” wow!!! NO they certainly DO and it’s serious, it’s cancer!”

    I know all three of these ladies didn’t mean harm but it really is offensive!!

    • thesmallc says:

      Erica, I dislike all those comments you mentioned. Perhaps we should be educating more about breast cancer facts. We also need people willing to learn. I’ve been told I have “the good cancer” but when I explain how serious it is, some have told me their doctors told them it was “the good kind.” So we have a complicated culture in cancerland where the people who are supposed to be educating, are actually misleading patients.

      Thank you for your comment!

  8. Carrie says:

    No one has judged my treatment. Sometimes I hear about people taking a “more alternative route” to treatment but no one has flat out said that I have done the wrong thing. I think I might punch them if they did. The fact is, we have to make very quick, life saving decisions under a great deal of stress. We can only do the best we can do with the information we have at the time. For example, I didn’t know that women get chemo first and then their mastectomy as a way to preserve part of the breast. Now, maybe that was never an option for me and that’s why my surgeon didn’t offer it but if I knew then what I know now, I might ask about it. It doesn’t make the mastectomy a wrong choice. It is what it is. You had a lumpectomy, I had a mastectomy, we both can still get cancer again! Or not! Screw other people and their ignorance. Own your choices and keep making the best ones you can with the information you have now.

    • thesmallc says:

      Carrie, you’re so right. We make our choices based on the information we have. The decisions we make should always feel right for us. I remember feeling pressured by time. I needed to make decisions fast because I wanted this “thing” out of me! I don’t know what tomorrow will bring but my hope is we won’t have to go through this again.

  9. nancyspoint says:

    Hi Rebecca,
    Such an excellent post on an important topic. I never had to deal with this too much myself, but I know lots of people do get loads of treatment “advice”. I don’t know why people feel it’s okay to offer their opinions for this, that and the other thing. I guess they’re trying to be helpful, but of course, sometimes the best way to help someone dealing with cancer is just to listen. Silence is so under-rated. We all make the best decisions we can at the time we must make them. No one knows your body like you do. Thanks for the post.

    • thesmallc says:

      Nancy, thank you for saying those last words. Only we know our bodies best (and ourselves). I know people try to help, and like you, I also appreciate silence. Listening also seems more helpful to me. Thank you for commenting and sharing this post!

  10. Cindy Sanders says:

    BC ( before cancer) I’d always thought that I’d say, “take them both off”, but my surgeon suggested a partial and reduction of the other breast. I was always the girl with the big boobs (h cup prior to surgery). I didn’t realize how much of my identity was in my breasts. My breasts, my choice.

    • thesmallc says:

      Cindy, you made the right choice for yourself and that’s what really matters. It’s such a personal decision to make and you need to feel OK with it. Stay well and thanks for your comment!

  11. Rebecca, I too had a lumpectomy at Stage 2B. I found out I was triple negative and had the BRCA2 gene only after surgery. Would I have made a different choice if I’d known? I can’t say, but I have no regrets.

    Where I’ve had more than my fill of judgment is from natural remedy people who didn’t hesitate to express opinions about putting chemo/poison into my body. I’ve always been a natural remedy person, but cancer is cancer and a person doesn’t know what she’d do except when in that situation. But the worst, most stupid comment came well after surgery when a “friend” sent me a link about how baking soda shrinks cancerous tumors “for your consideration.” I thought: WTF should I consider? That I made a mistake having surgery? This is just one example of too many similar emails. I distanced myself from this “friend” because I couldn’t take the b.s. anymore.

    • thesmallc says:

      Eileen, we do our best with the information we have at hand. And because we have to live with those decisions for the rest of our lives, we are the only ones who should make them.

      I really want to see a person who offers those “cancer cures” go through a cancer diagnosis to see if they will take their own advice. Not that I wish cancer on anyone, I have to make that clear. But I am sure some of these people have, or will eventually, face cancer. What will they do? I was also offered the baking soda “cure,” but mine came with lemon. I guess they added an extra touch for flavor. Hey, at least there’s no metallic taste, let’s be fair.

      Thank you for commenting on this post, Eileen. xx

  12. bethgainer says:

    Rebecca, what an excellent, insightful post! People are great at doling out advice, huh? I also chose radiation with lumpectomy initially and a few years later, after a tremendous scare, I opted for a bilateral mastectomy with reconstruction. Some people butted into my business throughout my treatments, questioning my chemo regimen and hinting that my doctors were incompetent. And here’s the ironic part: these people were part of a support group! I ditched them.

    Whatever treatment a person chooses is the best decision he/she can make at the time. None of us has a crystal ball to predict whether our medical decision will ultimately pay off. To these busybodies I say, “Mind your own business!”

    Great, truthful post, Rebecca.

    • thesmallc says:

      Beth, If your doctors were incompetent, then they should be the oncologists treating people, and dealing with the struggles of not being able to know the outcome of each patient, because there’s no cure for cancer. The nerve these people have! You did what was right for you and that’s what’s important (I am sorry about the scare you experienced).

      If only people minded their own business, what a world this would be.

      Thank you for commenting, Beth. xx

  13. The Accidental Amazon says:

    Rebecca, thanks for writing this! I was astonished at some of the thoughtless and unsolicited ‘advice’ I was given by a few colleagues when I was first diagnosed. I don’t know why people think they are entitled to do this, but I found it really hurtful and entirely unhelpful. At a time when we need information about the risks and benefits of our treatment options, the last thing we need is unfounded, insensitive opinions. Kathi

    • thesmallc says:

      Kathi, I am sorry you got some insensitive comments too. I always try to come up with excuses for people who often “don’t know what to say” but end up speaking anyway. Their behavior probably has to do with their own fears, but also what they wish they would do if they were in our situation, except they will never know until they are there. This is one reason I stayed away from most people during treatments.

      Thank you for commenting on this post!

  14. Rebecca, on the theme of “You should have been there yourself before you comment on MY decisions.” Wonder what Columbus would have said when he was on the dock unloading all the cool things he found in the Americas and someone asked him why since he was looking for China he came back with non-Chinese stuff. “Guess you had to be there to understand.”

    We make decisions –our business.

  15. I don’t remember having anyone question my decisions about treatment, but I know I would have found such comments “unhelpful” at best. Deciding on a course of treatment is a challenge–I know it was for me. I think many people don’t realize how involved and individual decisions about cancer treatment can be. Thanks for your insightful post on this important subject!

    • thesmallc says:

      Hi Lisa! Yes, each case is unique and we handle situations differently. I am glad you didn’t get such comments. For me, the part that really annoyed me was 1) it was said by someone who isn’t close to me and 2) the comment was made after my surgery. One problem could be people think out loud too many times.

      Thanks for your comment.

  16. scottx5 says:

    Rebecca, posted a question at the Facebook site.

    • thesmallc says:

      Hey, Scott! At thesmallc facebook page? I tried finding you but could not see it.

      • scottx5 says:

        Hi Rebecca M. I put the comment at the Cancer Blog Mentors FB page. I’m thinking some of this discussion on hurts and insults could happen in a place accessible to prospective bloggers? I’m looking into PTSD for clues to the trauma of cancer and would like it to be a community project. More later.

      • thesmallc says:

        Ah! Got it. Sounds interesting. Looking forward to learning more.

  17. Becky says:

    Hi Rebecca,
    I totally understand. I’ve had people say “if I ever got cancer…”. In my case it had to do with chemo. When it is someone you know well, you can have the discussion about how you really don’t know how you will react. How the actual event of a diagnosis and having to really make those decisions changes your perspective.
    But when it is someone you don’t really know well, then it can feel insensitive and judgemental. I hate that!
    Cheers,
    Becky

    • thesmallc says:

      Becky, I too find it easier to have such conversations with people I am closed to. I had discussions about my treatment plans with my family, because I wanted them to be part of everything. But it is very insensitive when someone you haven’t spoken to in years tells you you’ve made the wrong choices. Crazy.

      Thank you for your comment. xx

  18. Pingback: Weekly Round Up: The Pink Elephant Edition | Journeying Beyond Breast Cancer

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s