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Anyone unhappy with their oncologist and change to someone else
ABBYB
85 Posts

Im at a cross roads with my treatment right now. My onco is being very unclear about the extent of this new chemo im on. Apparently up to 14 treatments?! But i was thinking last night and yes there was cancer the "1/2 the size of a sesame seed" in one lymph node. So no PET scans were done or clarification about if it had spread during my 6 chemo TX's? I was just put on this new KADCLYA which is new and apparently successful. I just want to be sure that im not putting my body thru unnecessary stress. Im on Zoladex & starting exemestane for 5 yrs.
Im scheduled for another ultrasound and idk what breast they want to biopsy??? The right side has been looked at at least 4x and 3 biopsies, all clean! The onco clearly said it was an area in left side (lumpectomy & RADS done!) I had MRI done and the radiologist wanted the ultrasound. DOES THIS SOUND LIKE WE SRE GOING IN CIRCLES??? Left breast was marked as well/they did a mammogram & ultrasound & was biopsied before surgery!
I really just want clarity & understanding about where im at??
I have neuropathy in feet & hands, lost weight, sleepless nights, emotions all whack!
This makes me feel so worthless that my onco wont communicate to me when I ask him the same questions every visit!! Its discouraging, esp since my original onco up & left me, and now I have this guy

4 Replies
ACH2015
2306 Posts

@ABBYB

Many times patients request a 2nd opinion. The link I am including is from the Canadian Cancer Society and talks about how to go about getting that 2nd opinion. https://cancer.ca/en/living-with-cancer/coping-with-changes/working-with-your-healthcare-team/getting-a-second-opinion

I am also including the greater link from the CCS https://cancer.ca/en/living-with-cancer/coping-with-changes/working-with-your-healthcare-team that contains the first link I gave you. It's your health, and we patients go through enough stress with treatment and dealing with the cancer.

I hope these links help you get the answers you seek, and it is unfortunate your oncologist is not more forthcoming and simply answer your questions.

Keep well

ACH2015

JustJan
1628 Posts

@ABBYB I’m sorry you are feeling anxious about all your treatment and unhappy with your oncologist.

When I went to see my breast surgeon almost two years after my lumpectomy, I had an area of concern on my breast that had the lumpectomy and the area of concern was where I’d had the previous surgery. My surgeon felt it was likely from radiation but my surgeon gave me the option to biopsy or do another mammogram in 6 months time. I opted for the biopsy because wait and see wasn’t an option for mentally. It turned out to be necrotic tissue as a result of radiation.

My husband’s cousin in California has triple positive IDC as well and she has been taking Kadcyla as part of her treatment. From talking to her, there can be some pretty significant side effects and you are monitored very closely. She took a bit of a break to have her radiation but was going to be either starting back on that or moving to Herceptin. So perhaps the uncertainty on number is related to how well you tolerate the medication. I’m not a doctor and can only share my personal experience with you.

I definitely think it’s okay to ask for a new oncologist if you’re not meshing with your current one. Starting with a 2nd opinion might be a good place to start. I hope you can get this sorted so that you feel more comfortable and have confidence in your care team.

BellaBlue
43 Posts

I’m sorry your onco is not providing you with the information that you need. Mine was the same. I still don’t know my chance of recurrence other than I receive the most aggressive chemo she could give, not so reassuring. I’m sure you have looked up kadclya but in case you haven’t here is a very good explanation of how and when it is used.

ABBYB
85 Posts

@BellaBlue yes I have done research on it. This however says kadcyla is only to be administered with herceptin. Ive been on trastuzumaub since last September & since my 1 year that is coming up i will ask about this next visit. I was told your on herceptin for 1 year. But again I asked about this & the onco just responded “we can do as many as we need, there is no set # of treatments" 🤷‍♀️ thats not a good enough answer for me. Esp since the side effects are quite concerning. Thanks for this

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