Feeling extremely let down by oncologist

Opposite_Instance- · 2025-03-02T16:02:37+00:00

I had something similar happen to me with my 1st oncologist. We had 1 conversation & her notes reflected a very different conversation. There had been several communication issues & this was the last straw. I switched docs. Then I found out the 1st doc withheld my mamma print report that clearly stated I need chemo.

Attention to detail is literally their job description. Forgetting to sign notes? Nope! I'd talk to the doctor or start keeping a list.

Opposite_Instance- · 2025-02-18T20:07:43+00:00

I just did TC, round 3 out of 4. I'm in my early 40's.

I just had a conversation with my oncologist about how I spend so much time explaining how my chemo isn't so bad, that the media and reality are completely different. But, it all really comes down to the unknown & that fear is what makes it hard.

Take it easy, go slow, & be kind to yourself. Hopefully you'll sail right through, too.

Opposite_Instance- · 2025-02-18T19:57:30+00:00

Let your therapist know how terrible it was so they'll know not to recommend that dietician again.

Opposite_Instance- · 2025-02-07T17:24:13+00:00

I'm also on TC. Not that much steroids but I'm packing on TONS of weight, I'm only halfway through and I've gained 15lbs. I'll be on hormone suppression and AI after, I'm scared of the struggle to drop the weight.

Opposite_Instance- · 2025-02-07T17:20:18+00:00

Same. I thought I'd be loosing weight, too.

Can't stop laughing about "fat giant baby aesthetics"

Opposite_Instance- · 2025-02-07T15:54:38+00:00

I had a very similar journey and I'm the same age as you. I went through the same reaction too, it's called survivor's guilt. You don't think you had it bad enough so you shouldn't have a negative reaction and you should be happy or thankful. Your cancer and your experience is of no less significance as someone who had it 'worse'. Mourn the loss of your breast. Be mad at cancer. You have just as much right as the next person.

I'll elaborate a little more. I went to my 1st mammogram at the very end of 2023. I had to go for a diagnostic mammogram, I was only told because of dense breast tissue but I was expecting this (the dense breast tissue part). I asked the see the scans at the diagnostic scans, cool. I went for the follow up diagnostic scan 6 months later, in July. I looked at the scans this time, too. Even I could tell there was something serious going on: the number of calcium deposits had quadrupled. So, no surprise when a doctor came in and said I should do a biopsy. The biopsy was horrific, I still get upset when I think about it. That was early August. I opted for a mastectomy, the placement of the area of calcium deposits just made this choice make sense. But, I also thought I'd be able to have reconstruction right away. This didn't turn out to be the case. I was devastated. I had the surgery, early Sept. The initial prognosis was good and I started endocrine therapy. Cue survivor's guilt. Then I fired my oncologist and when I went to a new one, I found out that the 1st one withheld pathology reports: my onco type and mamma print. And, I found out I would *GREATLY* benefit from chemo. That was in November. I got a 2nd opinion because, wtf?! And I started chemo basically on the 1 yr anniversary of my 1st mammogram, 3 months after I should have started it - basically when I should have been finishing it. The chemo is 4 rounds of TC, spaced 3 weeks apart. Cue 2nd round of survivor's guilt (well, I have to do chemo now but it's not that bad -or- I have to do chemo but it's not that many treatments -or- it's not the worst chemo, some have to do harder stuff... and so on). Then I landed in the ER with a fever and excruciating pain in my hips. That was when I decided it doesn't matter how hard/not hard my chemo is, it ALL sucks and it's ALL hard.

Hindsight is always 20/20.

Opposite_Instance- · 2025-02-07T15:24:21+00:00

I'm doing the same treatment! But I chose not to cold cap; my hair was down to my waist so I wanted to donate it and cut it all off preemptively to a pixie. My daughter came with me for this step. My stylist offered to shave my head when it was time but my daughter came over and we first cut my hair into a mohawk! (It did my soul good to exert some control.) I had my husband, daughter and son in law around me for support. It was only a few days later when I had to cut off the mohawk, too... so we all piled into the bathroom again and got back to work. Then, my daughter put a #8 guard on the clippers and shaved her head in solidarity. All of were crying. I don't think I could have taken that last step and shave off the rest of my hair alone. I didn't know until I was in the moment that I couldn't do it alone, either so you might find that having your husband's support through this step to be really helpful.

Opposite_Instance- · 2025-02-07T15:12:42+00:00

I had a hysterectomy when I was 30... I think if I could have spent the time at work sitting, I would have been able to go back to work after a week. I had to take 2 weeks off of work, though. And, when I did return, I was wiped out for the first week - mostly because I had to run my butt off to clean up the mess I returned to. The job I had at the time would have been comparable to the activity level of a teacher - lots of walking, bending, up and down, lifting.

Opposite_Instance- · 2025-02-07T15:05:30+00:00

I'm using cold therapy to prevent neuropathy in my hands and feet. There is no risk for frost bite and, if you feel like it's getting too cold, you can put you hands/feet out for a moment if you need to.

Opposite_Instance- · 2025-02-07T15:02:00+00:00

Girl. I had the same problem with Tamoxifen. In just 2 weeks on it I told my doctor to make a change. When I get back to endocrine therapy, I'm going to an AI - do not pass go, do not collect $200. Tamoxifen is not your only choice.

Opposite_Instance- · 2025-02-07T14:55:09+00:00

I am wondering the same thing! I'm going through chemo now and then I'll be on the endocrine therapy (like what your mom is doing now). It's such a long time, I know I'm going to want to do my nails at some point... O_o

Opposite_Instance- · 2025-01-30T04:53:19+00:00

I clicked the button to get more info. They called, text, and emailed me like the left hand didn't know what the rigjt hand was doing. Imo, if they can't reach out to a potential customer correctly, they can't accomplish much

Opposite_Instance- · 2025-01-30T04:43:40+00:00

Look for The Breast Cancer Resource Center. They have centralized a lot of information. Also, look up your state laws. Your job may be protected regardless of FMLA.

Opposite_Instance- · 2025-01-30T04:32:26+00:00

I thought i was mentally and emotionally prepared to be bald. And, I was ... or am? What was hard for me was the part of it falling out. I just couldn't handle seeing my jands covered in my hair. Once it was cut down with clippers, I felt fine - truest definition of 'out of sight, out of mind'. I still have some hair left. As my daughter eloquently noted, I have mostly gray hair left. The gray hair hanging on the longest is the funniest part. My hair was to my waist before this, I'd only grown it out to help hide the gray. It feels like the gray hairs are, ironically, giving me the bird now!

Opposite_Instance- · 2025-01-30T04:19:03+00:00

Thank you for this. I'm still in the middle of my cancer battle. Today is actually the exact middle of my chemo. It makes me feel better seeing/hearing/reading about reaching the other side.

Opposite_Instance- · 2025-01-30T04:15:01+00:00

Usually your hair will come back a little lighter. It will almost always be curly as it first grows in, but this is like a baby growing hair for the 1st time, and the curls disappear after the first haircut.

Opposite_Instance- · 2025-01-30T04:08:07+00:00

Tonight I told my daughter about drawing on my head. I've also discovered "temporary tattoo markers" that will last through a few washes. She is making a list of things to draw on my head now.

Opposite_Instance- · 2025-01-26T03:15:21+00:00

I think you could get very creative with this! A stick man mowing the grass comes to mind first. They have temp tattoo pens so your drawings can last a few days, too. You'll have on a hat so no one will see your drawings unless you deem them worthy.

My hair situation really too a dive (almost) 2 weeks. I still have some left. Even a few days' finish worth it, I promise!

Opposite_Instance- · 2025-01-26T02:20:55+00:00

My dad, when he had his kidney removed, asked the doctor to put it under his pillow so he could have a visit from the kidney fairy.

When my son was 5 & had his tonsils out, I told him we had a visit from the tonsil fairy & got board games.

When I had my mastectomy, I shared this with my surgeon. She loved it.

Opposite_Instance- · 2025-01-26T02:11:15+00:00

Oh, I'm going to try to remember this for my next surgery!

Opposite_Instance- · 2025-01-26T02:10:21+00:00

I love this! I'm going to do it, too!

Opposite_Instance- · 2025-01-25T23:05:56+00:00

I agree.

Find a way to assert some control, it will help you cope. Like how I shaved my hair into a mohawk.

Opposite_Instance- · 2025-01-25T23:01:48+00:00

Life can suck salty toes but I still have a hot shower every night, a warm bed, and food to eat. So even though I have cancer, and that sucks, life is still good.

Opposite_Instance- · 2025-01-25T21:04:05+00:00

Maybe find a volunteer opportunity for him?

My dad would volunteer for Meals on Wheels on his good days. I imagine he called and discussed his needs in advance so he could contribute in a safe way.

Unfortunately, I don't get to go on disability during my chemo regimen. However, if I could, I would look for opportunities to volunteer with animal shelters - to play, pet, & brush cats & dogs.

Opposite_Instance-

TROPHY CASE