SMT4's Journey:

Patient: Thyroid Cancer > Papillary Carcinoma > Diffuse Sclerosis

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: almost 6 years ago, Female, Age: 39, Stage III

  1. 1
    • SMT4
    • Experience with Diffuse Sclerosis
    almost 6 years ago
    SMT4's Avatar

    Diagnosed

    Oh No

    When I was diagnosed with papillary follicular cell carcinoma stage II it was after they had removed 2/3 of my thyroid and found that it had spread around my trachia and esophagus like melted plastic. They found that it had spread into my vascular and lymph (invasion).

    0 Comments
  2. 2
    • SMT4
    • Experience with Diffuse Sclerosis
    almost 6 years ago
    SMT4's Avatar

    Surgery

    Procedure or Surgery

    Two surgeries one diagnostic with 2/3 of thyroid came back follicular pappillary . The first surgery was the hardest becasue of anesthesia it made me very sick to my stomach. I found asking for zofran onboard prior to me waking was the best choice to help deminish the nausea. Second surgery to remove remaining thyroid with two titanium clips implanted along the parathyroid because of bleeding risk to vessels near parathyroid. The one was really easy considering the complication I had a great doctor once again, and awesome anesthesia team who nailed my meds and painkillers. I did the second surgery post with only a tylenol occasional for pain. I was up that night watching t.v. relaxing. I had a slight sore throat from the breathing tube but that was it. I have to say the second surgery was a breeze. I also had great support during both which is vital to getting through this process.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  3. 3
    • SMT4
    • Experience with Diffuse Sclerosis
    almost 6 years ago
    SMT4's Avatar

    Cytomel

    Drug or Chemo Therapy

    I was put on cytomil which caused extreme anxiety and heart palpatations. This made it difficult some nights to sleep which was terrible. Also I had extreme headaches that felt like migranes. I found it helpful to lay down and visualize calming environments and use relaxing fragrances.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  4. 4
    • SMT4
    • Experience with Diffuse Sclerosis
    almost 6 years ago
    SMT4's Avatar

    Internal radiation

    Radiation

    I131 radiation therapy for thyroid cancer

    Painless Experience: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  5. 5
    • SMT4
    • Experience with Diffuse Sclerosis
    almost 6 years ago
    SMT4's Avatar

    Thinking problems

    Side Effects

    I had a couple side effects that I have had to meet with the challenge of cancer. I have started to loose my hair and thinking problems are a side affect of my treatment and hormone embalance, along with with anxiety and physical weakness. The thinking problems at times are the hardest because lack of concentration is not easy when you are going to school. You barely have the energy for school let alone trying to remember or conceptualize information. I am on disability right now because I have a physical job that demands energy working with the disabled.

    0 Comments
  6. 6
    • SMT4
    • Experience with Diffuse Sclerosis
    almost 6 years ago
    SMT4's Avatar

    Relationship

    Loss

    I have lost my job at this point because I can't go to work. I have also lost friendships because other peoples lives have gone on and after a year almost of dealing with diagnosis, surgery, and now treatements people get tired of sticking around. I have a really great family and close group of friends, and I have come to understand at times outsiders don't always have the endurance to stick with the patients progress.

    0 Comments
  7. 7
    • SMT4
    • Experience with Diffuse Sclerosis
    almost 6 years ago
    SMT4's Avatar

    Choosing the right treatment

    Decision Point

    I had the decision to continue to do biopsy or move forward with surgery against my doctors decision when the lump was first found in my neck. I pushed forward against the doctors advice and took the agressive route of having sugery and found an amazing endo doctor and ENT surgeon who have saved my life.

    0 Comments
  8. 8
    • SMT4
    • Experience with Diffuse Sclerosis
    almost 6 years ago
    SMT4's Avatar

    Psychosocial

    Other Care

    Therapy is always a good resource especially when dealing with loss of health. One goes through a morning process of what was and what will be without certain things in your life. I have at times found therapy helpful in dealing with the loss of my energy, change in relationships because of lack of socialization, and redifining who I will be during and after the treatment.

    0 Comments
  9. 9
    • SMT4
    • Experience with Diffuse Sclerosis
    over 5 years ago
    SMT4's Avatar

    Internal radiation

    Radiation

    The first 6 hours I was feeling okay. Then I started to feel nausea headache and really weak tired. I hardly ate the first few days of isolation. When I got home the 4th day my face and skin started to show swelling and felt more discomfort in throat and neck. I would say the best thing for me was having sodacrackers by the bed. Not moving in an empty stomach. Also starches potato, bread, melons helped calm my stomach. Th

    Painless Experience: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    1 Comment
  10. 10
    • SMT4
    • Experience with Diffuse Sclerosis
    over 5 years ago
    SMT4's Avatar

    Weight gain

    Side Effects

    I started to retain fluid and gain weight post radiation therapy. They said it would happen during the hypothyroid state but it seemed to carry over into the post radiation. The fluffyness is starting to go away, however, the metal taste seemed to increase after radiation and is still sticking around a week later, they say this is normal but everything taste like a metal fork. Hopefully the metal taste will leave soon.

    1 Comment
  11. 11
    • SMT4
    • Experience with Diffuse Sclerosis
    over 5 years ago
    SMT4's Avatar

    Finished treatment

    Celebration

    I was told today that the radiation is doing its job and my levels are in normal range. I was able to drive finally to the golf course after 4 months of two surgeries, treatment, and radiation and hit a a full bucket of balls. I am so happy a new normal is starting to occur.

    4 Comments
  12. 12
    • SMT4
    • Experience with Diffuse Sclerosis
    about 5 years ago
    SMT4's Avatar

    Birth

    Celebration

    This person has yet to add any details about this experience.

    2 Comments
  13. 13
    • SMT4
    • Experience with Diffuse Sclerosis
    almost 5 years ago
    SMT4's Avatar

    Cancer is back/Recurred

    Oh No

    enlarged lymphnodes under ear must go in for ultrasound

    0 Comments
  14. 14
    • SMT4
    • Experience with Diffuse Sclerosis
    almost 5 years ago
    SMT4's Avatar

    CAM (Complementary and Alternative Medicine)

    Other Care

    I went out and found a new doctor and went to city of hope. A cancer patient has so many jobs and none of them is time to be sick .

    0 Comments
  15. 15
    • SMT4
    • Experience with Diffuse Sclerosis
    over 4 years ago
    SMT4's Avatar

    Internal radiation

    Radiation

    Did thyrogin injection with LID and Radiation. The Thyrogin shot made me weak on the first injection about 2 hrs after recieving them I had a really bad headach in the middle of my forehead. The second injection on the second day was not so bad headach returned with injection but mostly really fatigued and slept the day. The next day I returned for my RI 131 dose isolation, and WBS. Negative Results.

    Painless Experience: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  16. 16
    • SMT4
    • Experience with Diffuse Sclerosis
    over 4 years ago
    SMT4's Avatar

    Remission

    Celebration

    Got the official word from the Dr no evidence of cancer. Have to return in 4 months for ultrasound to keep track.

    0 Comments
  17. 17
    • SMT4
    • Experience with Diffuse Sclerosis
    over 4 years ago
    SMT4's Avatar

    Levothyroxin to Supress cancer growth

    Drug or Chemo Therapy

    The doctor after my second round of radiation has decided to reduce my thyroid medication even further to insure good supression of possible thyroid cancer returning or growing. This is uncomfortable becuase it causes less thyroid hormone and makes it difficult to have energy.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    2 Comments
  18. 18
    • SMT4
    • Experience with Diffuse Sclerosis
    over 4 years ago
    SMT4's Avatar

    Ultra Sound

    Other Care

    Today I head out for my triannual US of neck to see how things are going. And their will check my Thyroglobulin levels to see how my suppression is going.

    0 Comments
  19. 19
    • SMT4
    • Experience with Diffuse Sclerosis
    almost 4 years ago
    SMT4's Avatar

    CT Scan

    Oh No

    Found mass in right lung after CT w/ contrast was done for hurt shoulder. Heading back in for a CT scan after Turkey Day to see if it is growing.

    0 Comments
  20. 20
    • SMT4
    • Experience with Diffuse Sclerosis
    over 1 year ago
    SMT4's Avatar

    Skin changes

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  21. 21
    • SMT4
    • Experience with Diffuse Sclerosis
    over 1 year ago
    SMT4's Avatar

    Other Care

    This person has yet to add any details about this experience.

    0 Comments