Our history: Good afternoon dears, I... - Advanced Prostate...

Advanced Prostate Cancer

11,500 members13,922 posts

Our history

Rilu
Rilu

Good afternoon dears,

I want to tell our experience in case that can help someone.

My husband was diagnosed in May 2017 with aggressive prostate cancer (G 9 - 4 + 5) and met in both seminal glands, periprostatic fat, iliac chain ganglia, bladder, and 3 vertebrae (T9, D3 and right coccyx). Immediately he was prescribed ADT (Decapeptyl injection every 6 months) + Docetaxel (6 sessions). His PSA at the beginning of the disease was 10. With the treatment his PSA has not dropped more than 0.37. It is oscillating. The last analytic showed 0.6, the previous 0.4, and the previous 0.7.

After the last session of Docetaxel he was given a control CT scan. result: Nothing.

My husband is visited in two different centers: Public Hospital and Oncologic center Dr. Bellmunt of Barcelona. Dr. Bellmunt congratulates us for the results and proposes us to do radiotherapy to consolidate the treatment.

In March 2018 my husband underwent 38 sessions of local radical radiotherapy. In control TAC: nothing. We request a more accurate MRI in July. result: normal prostatic mass (before 7 cmx4) but with slight uptake in right side, right seminal gland with slight uptake and also uptake in "left" coccyx (initially it was right -waf!!).

My husband, as a child, has a defect in his left hip that makes him cringe a lot when he walks ... I do not know if it can be that, but in the public hospital they wear it, without further evidence, they consider it metastasis.

There are several things that I do not understand: Why do hypercaptant images appear (I do not know if it can still be radiated tissue), why my husband does not manage to go down to PSA 0, and why do not perform a PET-CT before assuming that the image of the left coccyx is metastatic when all the rest has decreased and more or less remains in PSA.

Anyway, this afternoon we have a visit with oncologic center Dr. Bellmunt to see what his impressions are. The urologist of the H. public, a year ago, took me to a room and told me that my husband had from 1 year to 3 years of life, that ADT + Docetaxel was put on it because it was a young body but more as a palliative ( it left me shattered), and that the ADT would only take effect for 11 months. I only know that, for now (we cross our fingers) it continues with the same treatment at the beginning, after almost 1 year and a half, and it has not only been paralyzed but has been considerably reduced.

I am very encouraged to read you all. It gives me hope.

I hate general statistics and I'm sure that we will break them with tenacity.

My dream: that my husband does not have bone metastasis and can have an operation that ends this nightmare. A lot to ask? Dreaming is free, you just have to try it.

My husband lives a normal life, he does not think about the disease, at least it seems that, although sometimes, when we are better (for example on a trip) fear arises and he asks me "everything will be fine, right?" I'm sure yes

For those who have little time, or carry a lot but feel hopeless, you live in constant fear, but you see, out of nothing comes a whole, you should never give things for lost.

Love to everyone

4 Replies
oldestnewest

Started with prognosis of 12-18 mo. adt. chemo. xtandi. now say in remission and may have 10 years. All they seem sure of is that someday it will come back and kill me. Live in fear, or just go on with life....had left hand repaired, orchiectomy and plan on ten years without any ADT drug and a hand that works right again. Get on with life and enjoy every minute you can.

Your story mirrors mine with my husband even to the May 17 diagnosis . He has had the same treatment routine and now takes Xtandi. Maybe Zytiga or Xtandi might be a good follow on treatment for him.

Your doctor may have called ADT drugs palliative but each work a little differently and each can provide months or years of quality life. I have been surviving on ADT drugs for 20 years with an occasional side step to salvage radiation and Provenge.

Dr Bellmunt should be avoided. He still lives in the dark ages treatment wise and have not followed many advances being discovered in PC treatment. Find one that is up to date in cancer research. With PSA less than 1, I can’t believe Bellmunt would say that prognosis unless he saw something else in your hubby that is not mentioned in your post. Your hubby’s ADT (why didn’t he add bicalutamide?) and docetaxel are just the standard care of treatment that “average” doctors would do. There are many newer treatment available: Zytiga, Xtandi, Lu-177, Ra226, clinical trials of other drugs, etc.

You may also like...