medullary thyroid carcinoma

FormerMember
FormerMember
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Hi,

My sister (age 42 years- married with no children) has ben diagnosed with medullary thyroid carcinoma ( cancer) in Jan 2021. The doctors has told us that she is in the last stage of this cancer and her lungs has been damaged about 75 to 80 percent due the growth of the tumor within the body. The tumor has moved down to different parts of body but has effected much to the lungs. She has been admitted to the hospital for 15 days until feb 2021. 

The doctors suggested that surgery is not possible as the tumor is spreads in small parts from the thyroid and they are also not able to remove the thyroid as well( from surgery).

They have given a lot of medicines but the main and expensive medicine she is using since 65 days ( 1 pill a day) is Lucivand 300 ( vandetanib Tablets 300 mg).

The doctor told to continue this medicine and also suggests to do the following tests on monthly basis.

1. Calcitonin

2. Carcino Embryonic Antigen

3. Chest Xray

The thing is now she is getting weak day by day, eats very less. She is unable to walk, some times moves a little from 1 room to another. She is having pressure on the lungs while breathing.

I want to know that if the above treatment is all fine? The doctors told that we will not go into chemotherapy.

Her above 2 tests results are as follows:

1. Calcitonin

Date                      Result (pg/ml)

5 Feb 2021           270.00

09 March 21           73.70

21 April 21            Yet to get the results from LAb

2.  Carcino Embryonic Antigen (Serum)

Date                      Result (ng/ml)

04 Feb 21                  383

08 MAr 21                  237

15 Apr 21                   248

If you suggest any other treatment or to consult with any other doctor then please suggest. We have already treated her in one of the best cancer hospital in Pakistan.

If you need any further lab tests details i can share.

  • Hello and welcome to the site. 

    I fear we probably won't be much use to you as the majority of people here have other forms of Thyroid Cancer. We do have members with medullary TC but for the most part, they have had it a long time and it was found whilst still in early stages and they are living well with their cancer. In your sister's case, if the doctors are saying her cancer is inoperable, then I fear she's gone much further than most of our members.
    Also, we're a UK based site and our NHS and private hospitals probably operate very differently from yours in Pakistan. I do think that if you're already in contact with one of the best cancer hospitals in Pakistan, it will be a very good hospital and the doctors should be top notch. 

    My only suggestion - and I don't know if they would be able to help - is to contact that Butterfly Thyroid Trust in Newcastle, UK. The lady who runs that has fantastic contacts with top surgeons in the UK (and quite possibly further afield) and will be best placed to know if the treatment your relative is getting is state of the art. 

    Another thing I don't know anything about in your country - but suspect it may be very different - is hospice care. As your sister gets weaker, you may well want to look into palliative care and how you can help her to have the least pain and the best quality of life for as long as possible. My suspicion is that people in Pakistan probably look after their sick and dying rather better within the family group than is typical western societies, but it may still be that you can arrange for good care at home or in a hospice.

    I'm sorry to not have more practical help to offer. I'd say to trust the doctors but always ask lots of questions. And to spend as much time as you can with your sister during this difficult time. 

    Best wishes

    Barbara

    “Scars are tattoos with better stories.” – Anonymous