Hindsight is always 20/20

Mavericksmom

Let me start with saying that I feel incredibly blessed. I have no bucket list, I achieved all that I ever wanted in life. I had a great childhood with loving parents and wonderful older siblings. (I am the youngest of five, ironically, so is my husband) I married a wonderful man and we have a good marriage that has lasted 40 years and continues to grow. I had a career I loved, I am still working in a different career, but one that I at least love parts of.

My life isn't perfect but I have been lucky thus far in that my problems have largely been financial. A friend once told me something that has stuck with me ever since. She said, "If you have a problem and can throw money at it to make it go away, than it isn't a problem!" I have "thrown money" at many things over the years that left me with more debt than I care to have, but she was absolutely right. Over the years we had college to help pay for, which we will most likely pay for the rest of our lives, (our children took out loans too), we had normal home repairs and some not so normal, like removing an in ground oil tank, then dealing with PAEPA because of contamination.

I had both of my children via C-section for health reasons, both shoulders have total reverse shoulder replacements in them and I had breast cancer twice. I survived and thrived after each event. I am so thankful!

That said, I will now focus on my breast cancer. In 2003, I had a 1cm IDC, followed by two lumpectomies, second for clean margins, chemo, radiation and an attempt with Tamoxifen. I stayed free of cancer for 15 1/2 years!

Last Dec I was diagnosed with 1.3cm of ILC. I was refused a BMX due to hospital policy of removing a healthy breast, pressured into having DIEP reconstruction after my mastectomy, and put on Letrozole.

I learned a lot, like all of you, more than I ever wanted to know. I am one of the lucky ones, small cancers, discovered early, stage 1 grade 2.

I am no longer angry over the events of the past year, but that doesn't mean I am forgot them or that I am not annoyed at much of what took place. The past is over, all we can do is move forward, but I am taking what I learned with me into the future.

The following is what I learned, and some of what I wish doctors would learn.

We know that each of our cancers are similar, yet very different. I realized that each of us have similarities and differences in our lives with respect to breast cancer, and yet doctors largely ignore that. They tend to see us through our cancer and really don't care about us as a person other than what health issues we might have that might derail their treatment recommendations.

Doctors can cause us fear, when we really shouldn't be fearful. Those of us with stage one or two, have a really good prognosis. Some fear is inevitable but I felt way more fear than I should have and I am pretty sure I am not alone.

Doctors can be very condescending, without meaning to be. An example was when my breast surgeon at my first meeting after my biopsy told me what he recommended, mastectomy with reconstruction, and then added "you might have to take a tiny little pill for five years." Wow! We know what that is, the aromatase inhibitor! He wasn't telling a lie, but come on, it isn't just a "tiny pill" for me it was also two very large calcium/vitamin D pills (1" each) and Lipitor for the increase in my cholesterol, which, by the way, I have decided to stop.

I learned I can just say NO! Because doctors do not consider all that we are, we must always make the decisions that we feel are best for us. No medical professional, unless related to us, cares about us more than we do about ourselves. We know our bodies better than they do! It is ok to say NO to the doctor. The regrets I have from treatment are due to the fact that I didn't say NO more often! But, that is my life. We all should feel we can say no to any doctor recommendations, but we also need to take responsibility for whatever outcome happens as a result of our decision.

The main thing this year has taught me, is to be thankful for all that I have, and to live each day as if it was my last.

Yogatyme

Mavericksmom, what a great testimony to the importance of paying attention to our own instincts and knowledge of our bodies. I couldn’t agree with you more. I, too, have had a great life with few regrets and like you, believe no one has more interest in our health care than us! It’s nice to have a kindred spirit.

AliceBastable

I'm sorry you had such an insensitive surgeon. Mine was great; she said nothing to scare me and was reassuringly matter-of-fact with all the explanations, and she laid out the various surgical options in a sensible way. Surgeons don't know what hormone blockers we'll be on - that's up to the oncologist - so using the term "a tiny pill" may have been your surgeon's generic placeholder. I never expect surgeons to see past the body part they'll be working on. That's what PCPs and oncologists are for, to look at the big picture. I think it helps that I did paperwork on a surgical floor decades ago, and kind of got used to the narrow, hyper-focused way surgeons think.

Mavericksmom

yogatyme, I feel the same about you! Thank you for your comments! Can I assume you do yoga? If so, yoga intrigues me and I am wondering if there is yoga for people with joint replacements. I want to do stretching exercises, so maybe yoga isn't what I need?

Alice, I wish I knew you when I was diagnosed the second time! I could have used someone to give me clarification. I didn't even look at this site until well after my surgery.

Yes, that is what a PCP is for, but I switched my PCP 6 months prior to being diagnosed. Only saw him once prior to diagnosis and didn't feel comfortable enough to see him for help pre-surgery. Ironically the cancer hospital I went to told me to call a special number if I had any issues yet both times I did I was told to see my PCP. I saw him for one issue and not only did he help me, it gave me a chance to know him better. The other issue I dealt with myself.

My breast surgeon is a very nice older man, probably my age (mid 60's) LOL He is very kind and a good surgeon but says things I find confusing. He also said at my last visit, “you are free of cancer!" His comment and a video which emphasized that stage one stays in the breast, added to my doubt and reasons for stopping the Letrozole. I was supposed to have another follow up appointment with him in January but I canceled it. I am seeing my MO this week so I will speak to her about it. I am not sure she will still want to see me since I am no longer taking the AI. I really like her

Yogatyme

Mavericksmom, I was a faithful yoga practitioner for 20+ yrs until I got dxed with glaucoma and had to stop bc the head down positions ( of course the ones I liked the best) increase ocular pressure. I absolutely loved it and was never stronger. I finally convinced my brother (basketball, handball, Golf, etc kinda guy) to try it and he said “I have never sweated so much from moving so little”. 😂. There were people in yoga class that had joint replacements and seemed to do fine. I almost always did Hatha yoga which is the traditional but there are other types as well. I now do “rebounding”.....bouncing on an excercise trampoline and it is becoming my new favorite exercise.

Mavericksmom

Thank you! I heard that exercise trampolines are great for all kinds of health issues! I appreciate the feedback

Yogatyme

That’s what I’m reading. I’ve only been doing it for about a month, started with 5 min/3xday and have worked up to 30min/2x day. I put together a playlist and bounce to the music. I can already tell my lung capacity is increased, resting heart rate is lower, bp lower and energy level is improved. Good cardio workout and it’s fun with music.....without music, not so much....feels too much like exercise!!😂

Mavericksmom

I just checked some exercise trampolines out on Amazon. I like this idea a lot. I have a membership at a gym but it’s hard to get there after work. Having something worthwhile at home that doesn’t take up so much room and is affordable really appeals to me.

I have lymphedema from my first breast surgery, entire fat pad with 24 nodes removed. I think the exercise trampoline was recommended by a doctor years ago, to help the lymphedema. Have you heard anything about the trampoline and lymphedema?

AliceBastable

Mavericksmom, I actually disliked my PCP and saw her as infrequently as possible, about every three years or so. I finally fired her earlier this year and I'm getting used to a different one. This one seems to understand her role as medical air traffic controller, coordinating with the various specialists I have to see.

Yogatyme

Yes,I have read that rebounding is one of the best things you can do for lymphedema. It stimulates the lymph system and gets it moving, removing toxins along the way. Honestly, I feel better than I have in a long time....not since giving up yoga 8 yrs ago. It is also very easy on the joints and supposedly bouncing for 5 min is equivalent to running a mile. It strengthens the pelvic floor, which I am particularly happy about as I’ve started having some old lady urination issues. 🤪. If you start, be sure to drink plenty of water so you are eliminating toxins.

Mavericksmom

Alice, I love your analogy of PCP being an air traffic controller! Perfect! I did the same. I actually liked my former PCP but she had undisclosed health issues (doctors are not immune) and I absolutely hated the way that office was run. My new PCP is great and the office is like night and day from the former one. Everyone is friendly and very professional. I have only seen my new PCP three times but each time I feel more comfortable talking about my health. My husband sees another doctor in the same practice which is another plus. Should either of us need to advocate for the other, the office staff knows us.

Yogatyme thank you again! I am definitely ordering the exercise trampoline today! I will let you know how things go. Like you, I plan to start out slow

Mavericksmom

Yogatyme, I purchased an exercise trampoline and it is supposed to be delivered on Wednesday. I also watched several rebounding videos on Youtube. I don't know what made me decide to start this thread, or what made you decide to comment on it, but I am so very thankful it happened! It may sound crazy, but I think I was meant to start rebounding! I have a gym membership but do better with exercise I can do at home.

I'm excited to start and I know my problem will be starting out slowly. One of the videos I watched was by a doctor and she emphasized starting with slowly, only a few mins. I am also happy that it will help my lymph system!

Thank you so much

Yogatyme

mavericksmom, you are so welcome!! I hope you enjoy it as much as I do. Interestingly enough, I got interested in rebounding while watching an episode of Elementary. Sherlock Holmes was rebounding and telling Joan Watson of all the health benefits. I started researching, ordered a rebounder then got the call that my MRI showed spots in both breasts. The bc journey started and the rebounder didn’t even get unpacked until 6 weeks after surgery. Started very slowly and gradually built up. When you get some stamina built up, Life in the Fast Lane by the Eagles is a perfect rebounding song!! Let me know how it goes for you!

Mavericksmom

I am bummed. Estimated arrival of exercise trampoline is now pushed to next week, but I know it will be worth the wait!

I have my appointment with my medical oncologist this week. I am not looking forward to her reaction to my stopping the Letrozole or the first mammogram on my real breast since last years diagnosis, but I will be in and out of there in less than a hour so I will be fine. This is so much less stressful now because my focus is no longer on the appointments but on learning to rebound! I can’t wait to start!

I will definitely let you know how it goes. I don’t know if there is a thread on rebounding, but if not, Yogatyme, you should start one, especially since many, like myself, have lymphedema and can use all the help we can get moving on with our lives

Yogatyme

Mavericksmom, I also got a delivery delay notice from Amazon, so they must be getting busy for holidays. I took your advice and started a rebounding thread. I'm anxious to hear how it goes for you!!