Need guidance (lots of) with sacral mets and pelvic recurrence
Posted: Sat Jun 11, 2022 5:18 am
My dad was diagnosed with colorectal cancer in 2017. Actually I always wanted to avoid talking about this but now I am really scared. The tumor was 8cm from anal verge upto 15cm. He went for surgery in April 2017 for that and had a temporary ileostomy on right. He also developed an infection of some sort so another bag was added to the left side of abdomen. His improvement was slow. Later he was put on FOLFOX for 4 or 6 months. I don't remember that exactly because he also got some sort of lung infection during chemo so instead of IVs capacetabine tablets were also used. Chemo phase was really hard on him, weakness, chills, fevers, nausea. We did a PET/CT a month later in Oct 2017 and it came out all clear. He then went to get ileostomy reversed. Came back and few days later inside sutures ruptured or what but the liquid stools and gas started to pass from his external stitches. Went to OT again, blood level was barely minimum and massive weakness upon return.
In 2018, PET/CT revealed some sort of pelvic deposit 1 or 2 (they were never sure). Were suggested colonoscopy by surgeon. The biopsy came negative. We were relieved. (I should have really forced by dad for second opinion then). His bowel habits never returned to normal since ileostomy reversal. So we thought it is kinda new normal. And we avoided PET/CT tests in 2019, 2020. But CT scans were conducted every year though. He had bowel obstruction issues once or twice during 2019,20 but came back normal with OPD treatment.
In Dec 2021, main event was during december when he developed chronic bowel obstruction, Abdominal Ultrasound and CT revealed some deposits. We only went to general docs then. And they assumed it to be small bowel adhesive obstruction. His hemoglobin was nearly 14mg before admission and was admitted for 7 days. During that period his LFTs got quite bad and bilirubin also increased, yellowness was visible on face and eyes. Though it was within range upon discharge. Though his C. Reactive Proteins were always high and peaked till 282 but upon discharge were about 140.
In 2022, we did PET/CT in march. It showed Pelvic deposit size increase form 1 x 1.2 cm to 2.3 x 3.1cm (SUVmax = 7.78). There is also a lytic lesion with a soft tissue in sacrum (SUVmax = 9.7). This was the conclusion of PET/CT report and this was the only thing that docs wanted to work upon. Though there are few mild fdg uptake in palatine tonsils as well. And some unchanged non fdg avid nodes in lungs. Though this is the first time he also did a PET/CT with holding breath and the report showed a faintly fdg avid subcentimetric and bilateral lymph nodes SUVmax of 2.3 (likely inflammatory). <- This kinda worries me
We went to over old hospital and they suggested radiotherapy for treatment. But we kinda had many complications with past surgeries there despite it being a major cancer center so wanted to take second opinion they advised radiotherapy and chemotherapy. So my dad went with former one, since the doctor gave more promising feel.
My dad actually completed 25 fractions of 45 Gy to pelvic + sacrum + mesorectum in last month of May. His side effects were mainly cramps, bloating and unable to pass gas. Though it got better 3 weeks after course of treatment. His hb levels before starting were 8.1mg and had 2 units of blood transfused. Though the side effects got worse after 2nd week.
But there is my another worry now, the main MD wrote on paper that the treatment was complex curative. But the radio onco wrote it as palliative process. Though on his radiotherapy discharge paper is written as Complex Curative Technique. My dad actually met the MD just today and he asked to do PET/CT in a week or so and this time he also wrote on paper "Post Pall RT". I don't know but this palliative really bugs me. For most of time they tell they tell us this will remove the cancer but still write it as palliative .
We yet have to do CEA post treatment though pre treatment it was 4.83. His current hb is 9.4mg. Serum creatinine (0.6) and sgpt sgopt are also within range.
We have never been asked by MD directly to do chemo yet. But MD is friend of my dad's best friend. To whom MD have actually told chemo can be used for precaution against other recurrence.
I just want someone to tell me if we are following the correct procedure. What questions should I need to ask my doc. Also why the doc sometimes write it as palliative then other time as complex curative. Also if I need to worry about those lymph nodes at lung with SUVmax of 2.3.
I feel so alone and pessimistic everytime with no idea what to trust.
In 2018, PET/CT revealed some sort of pelvic deposit 1 or 2 (they were never sure). Were suggested colonoscopy by surgeon. The biopsy came negative. We were relieved. (I should have really forced by dad for second opinion then). His bowel habits never returned to normal since ileostomy reversal. So we thought it is kinda new normal. And we avoided PET/CT tests in 2019, 2020. But CT scans were conducted every year though. He had bowel obstruction issues once or twice during 2019,20 but came back normal with OPD treatment.
In Dec 2021, main event was during december when he developed chronic bowel obstruction, Abdominal Ultrasound and CT revealed some deposits. We only went to general docs then. And they assumed it to be small bowel adhesive obstruction. His hemoglobin was nearly 14mg before admission and was admitted for 7 days. During that period his LFTs got quite bad and bilirubin also increased, yellowness was visible on face and eyes. Though it was within range upon discharge. Though his C. Reactive Proteins were always high and peaked till 282 but upon discharge were about 140.
In 2022, we did PET/CT in march. It showed Pelvic deposit size increase form 1 x 1.2 cm to 2.3 x 3.1cm (SUVmax = 7.78). There is also a lytic lesion with a soft tissue in sacrum (SUVmax = 9.7). This was the conclusion of PET/CT report and this was the only thing that docs wanted to work upon. Though there are few mild fdg uptake in palatine tonsils as well. And some unchanged non fdg avid nodes in lungs. Though this is the first time he also did a PET/CT with holding breath and the report showed a faintly fdg avid subcentimetric and bilateral lymph nodes SUVmax of 2.3 (likely inflammatory). <- This kinda worries me
We went to over old hospital and they suggested radiotherapy for treatment. But we kinda had many complications with past surgeries there despite it being a major cancer center so wanted to take second opinion they advised radiotherapy and chemotherapy. So my dad went with former one, since the doctor gave more promising feel.
My dad actually completed 25 fractions of 45 Gy to pelvic + sacrum + mesorectum in last month of May. His side effects were mainly cramps, bloating and unable to pass gas. Though it got better 3 weeks after course of treatment. His hb levels before starting were 8.1mg and had 2 units of blood transfused. Though the side effects got worse after 2nd week.
But there is my another worry now, the main MD wrote on paper that the treatment was complex curative. But the radio onco wrote it as palliative process. Though on his radiotherapy discharge paper is written as Complex Curative Technique. My dad actually met the MD just today and he asked to do PET/CT in a week or so and this time he also wrote on paper "Post Pall RT". I don't know but this palliative really bugs me. For most of time they tell they tell us this will remove the cancer but still write it as palliative .
We yet have to do CEA post treatment though pre treatment it was 4.83. His current hb is 9.4mg. Serum creatinine (0.6) and sgpt sgopt are also within range.
We have never been asked by MD directly to do chemo yet. But MD is friend of my dad's best friend. To whom MD have actually told chemo can be used for precaution against other recurrence.
I just want someone to tell me if we are following the correct procedure. What questions should I need to ask my doc. Also why the doc sometimes write it as palliative then other time as complex curative. Also if I need to worry about those lymph nodes at lung with SUVmax of 2.3.
I feel so alone and pessimistic everytime with no idea what to trust.