Second opinion feedback

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jackboo09
jackboo09 Member Posts: 920
edited April 2017 in Stage IV/Metastatic Breast Cancer ONLY

Hi everyone

I promised to give feedback on my second opinion so here it is. If you want any more name details, please PM me as I cannot share those on an open forum.

The same THP x6 cycles was recommended with an option to switch to Taxol weekly if SE are an issue.

Cyber knife not recommended due to previous tx in 2011. However my current team are reviewing this again at an MDT on Fri.

Positives- 1: fresh set of eyes looking again at data. He spotted the need for a chest Mri ( fine resolution) to establish a baseline. Current team were happy to rely on a CT only.

2. Much more positive about the prognosis of her 2 mets. Mentioned oligomets but wouldn't be drawn on any extended survival. I have a Bone scan on Sat which may reveal further mets although the last CT showed clear from chest/ abdom/pelvis 2 weeks ago. Fingers crossed.

3. He personally referred me on to another hospital to a colleague as he knows I do not want to return to the chemo clinic in my home town. Even offered to text this ex colleague who is an oncologist and " will look after me". The paper work from hometown was slipshod and I would advise anyone to get copies. For example there was an addendum which appears to show backtracking on the part of current team to clarify important points.

4. Talked about many patients enjoying years of remission on this regime. One patient with a parasternal mass ( chest) is 13 years out and now on Herceptin only. I'm not naive, and I know things can change but don't you think that at this point this is helpful. Whether I replicate her example remains to be seen but it's given me HOPE and that is the key ingredient in all this crap!!!!!

5. Endocrine therapy to follow: chemo should stop periods. After that Letrozole and I told him I will have ovaries removed.

6. Thickening of upper GI- not overly concerned and happy to avoid endoscopy which could not shed light. Points to hiatus hernia. Thickened womb- believes is Tamoxifen use for 6 years. Again, not alarmed but I am now under gynaecologist for checks.

7. Can ask further questions if need/ want to. Amazing demeanour and thorough. BC nurse wonderful too.

Phew hope this helps. Obviously I am still terrified and trying to come to terms with the Stage 4 dx but I'm not giving up without a fight.

Liz

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  • Bright55
    Bright55 Member Posts: 176
    edited March 2017

    hi jackboo

    Congratulations.You have finally received a thorough analysis and plan. A great feeling to now be moving foreward. Management options for another oncologist was also wonderful..makes you feel that you have a good team. All the best huggs Bright

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  • jackboo09
    jackboo09 Member Posts: 920
    edited March 2017

    Thanks Bright,

    I have this bone scan to face on Sat now. Preparing myself for hot spots. Yuk the anxiety.

    L

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  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited March 2017

    Glad you got the second opinion. Things are looking very optimistic! Onward and Upward!


    Janis

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  • zarovka
    zarovka Member Posts: 3,607
    edited March 2017

    Nice job fighting for the right care. You will do great. Keep going.

    >Z<

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  • SSInUK
    SSInUK Member Posts: 245
    edited April 2017

    Well Liz - sounds good and thorough. You know I love and respect this guy and am so glad you saw him, but am still going to push back on cyberknife! He obviously knows way better than me if the location of your tumour is in the field of previous rt./ close to heart/lung etc. But American docs are more aggressive with radiotherapy and less scared of revisiting spots.so at leastkeep asking that question! Good luck today xx

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  • jackboo09
    jackboo09 Member Posts: 920
    edited April 2017

    Hi Sarah

    I felt like I couldn't press him on this but he did say I could get in touch with further questions. Doncaster also said it would delay chemo which seems to be their priority, yet Prof says now there is no rush to begin.

    I asked about neuropathy. It appears UK approach is wait for symptoms and then maybe switch to weekly Taxol.

    Just had bone scan now- yuk! Still have chest MRI to go. Maybe then Prof could review cyber knife. Can you have CK concurrently with THP?

    My mind not good today.

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  • SSInUK
    SSInUK Member Posts: 245
    edited April 2017

    i think they'd say do chemo first - if it shrinks it's them more gettable by Cyberknife

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  • jackboo09
    jackboo09 Member Posts: 920
    edited April 2017

    Yet another scan done- this time a hysteroscopy biopsy and although uncomfortable, I got through it. Not without a meltdown first though.

    No polyps though and it appears ok visually. Biopsy taken to make sure.

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  • jackboo09
    jackboo09 Member Posts: 920
    edited April 2017

    Hi

    I am pleased to report that my full body bone scan was clear and I will meet with my new oncologist in York on Fri to go ahead and hopefully start THP next week.

    I asked if it was unusual for a her2 mets lady to be classed as oligomets and he said yes although I realise that things can change at any stage.

    Rads will be looked at again if it shrinks and I got the impression that they would do it if they could. This is because it's so close to major vessels- this part scares me most.

    This onco said that pcr is seen but tends to be in Her2 ER neg women but I just want it to shrink enough and in the right direction.

    Thinks that's all for now. Exhausted. Thanks to you all who have kept me sane.

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