Sunday, October 24, 2021

Slow and scary, deadly scatteredly.

 If there’s a word that is synonymous with cancer, it’s chemotherapy.  It’s what most people have in their mind when they are talking to a cancer patient…… ‘have you had chemotherapy‘ or ‘when do you start chemotherapy‘.


An acquaintance asked nonchalantly some time ago ‘how did you get on with chemotherapy’ – he was surprised to hear my daughter hadn’t had it despite her widespread disease.  Cue – lengthy explanation!  I wasn’t annoyed by the question; I just think people automatically assume every cancer patient must undergo some form of systemic chemotherapy.  If you read any newspaper article about cancer, they do nothing to dispel that myth, as many articles contain a story about a cancer patient with no hair.


Sure, chemotherapy is not the nicest treatment to receive, and it does have pretty awful side effects for most. I, watching my daughter go through 3 or 4 months of this treatment where she seemed to be confined to a combination of her bedroom and her bathroom.  And it did shock me to see her without hair after radiation therapy.  I would never want anyone to go through that and it really brings it home when it happens to a close member of your family.


Despite its terrible news 📰 in regard to toxicity and its awful side effects, chemotherapy is widely used in many cancers.  Statistics show that it does work for many patients even my daughter  was pushed to it . However, I suspect it has a limited future as more efficient and less toxic drugs and delivery systems come online downstream. 

Biopsy is the gold standard to confirm the diagnosis but does not differentiate between pheochromocytomas and paragangliomas. Since most paragangliomas are vascular, a preoperative biopsy is not common.

Reside in ignorance. Where ignorance is the Master They handover prescription for disaster; If you don't know either you loose your life being a scapegoat or be blocked by doctors who are supposed to keep themselves updated and save the lethal Neuroendocrine Cancer warrior fighting since 3 years old of a genetic mutation One is named as king of the sky, the doctor of hormones Went into warzones, the next whose negligence pushed me to last stage is always proud and egotistical about mastery, wealth, superiority, this she's most desired. As for her eminence.the protegee smelly as my poop akin to perfume




Immunotherapy is often used as a replacement for chemotherapy, but this may be a while yet.  So, for now, millions of cancer patients worldwide will continue to be prescribed chemotherapy as part of their treatment regime. What if the patient is immunocompromised?


However, for some cancers, chemotherapy is not particularly effective. Neuroendocrine Tumours (NETs) is one such cancer, particularly for the low-grade of well- differentiated tumours, although but can be more effective in particular anatomical locations and at the higher numbers in Grade 2 and in Grade 3 well differentiated NET. It’s a first line therapy for most poorly differentiated Neuroendocrine Carcinomas.   I’m not saying the lower grades will never receive chemotherapy – that door is always left open for those with progressive cancer who perhaps have run out of treatment options. 


Putting Grade 3 to one side, I’ve heard people say that NETs is the ‘good‘ cancer or the ‘good looking’ cancer often citing the chemotherapy thing as some justification. That is of course a stupid thing to say.  I accept that not everyone will lose their hair and not every chemo will cause hair loss.


Here’s the message.  Many other treatments come with pretty challenging side effects. Moreover, the side effects and the consequences of these other treatments can last for some time, and for many, a lifetime. For example, with NETs:


Surgery can be pretty extensive, in some cases radical and life changing.  Many cancer patients receive surgery for NETs which is still the only real ‘curative’ treatment, although for most, it’s cyto reductive or palliative in nature.  If you lose bits of your small intestine, large intestine, liver, spleen, cecum and appendix, gallbladder, stomach, rectum, lungs, pancreas, thyroid, parathyroids, pituitary gland, adrenal gland, thymus gland, ovaries, oesophagus (…….I could go on), this comes with various side effects which can present some quality -of - life issues.  There can be huge consequences of having this treatment.


Other ‘consequences’ of cancer surgery include (but are not limited to), pulmonary emboli (blood clots), lymphedema, short bowel syndrome, gastrointestinal malabsorption, diabetes.


Somatostatin Analogues do a great job, but they do add to some of the effects of surgery (e.g. malabsorption).


Even the so-called ‘silver bullet’ treatment Peptide Receptor Radio Nuclide Therapy (PRRT) can have pretty severe side effects and presents some risk to kidneys and bone marrow as a long-term consequence.

I am adviced this










The thyroid gland is not visualised (post thyroidectomy). Coalescing enhancing nodular areas are noted in the location of right lobe of thyroid, abutting the right lateral and anterior wall of trachea. The confluent lesion in this location measures 2.7 x 2.3 x 1.5cm in size. A smaller enhancing area is noted in the location of left lobe of thyroid, abutting the tracheal wall, measuring 1.0 x 0.7 x 0.6cm in size. Multiple calcified nodular lesions are seen in both lung fields, relatively larger and more in number in the upper lobes, suggestive of old granulomatous lesions. Fibrotic bands are also noted in both lungs. Air trapping is noted in both lung fields. Few small thin walled cysts are also noted in both lungs. Diffuse inhomogenous mosaic pattern enhancement is noted in the liver parenchyma in arterial phase Right kidney is normal in position and size. Few small subcentimeter sized cysts are noted in right kidney, the largest in its upper pole measuring 0.9 x 0.8cm. The largest cyst in upper pole of right kidney shows relatively higher attenuation in non contrast sections, suggestive of a complex cyst (Bosniak type 2). There is no hydronephrosis or ureteric dilatation. Left kidney is normal in position and size. Areas of cortical scarring are noted in left kidney, more prominent in the upper polar region. A simple cyst is seen in its mid polar region in peripelvic location, measuring 2.7cm in diameter. Another small subcentimeter sized simple cyst is also noted peripherally in its mid polar region. There is no hydronephrosis or ureteric dilatation. A hypodense mass is noted in uterus, which may represent a fibroid. The thyroid gland is not visualised (post thyroidectomy). Coalescing enhancing nodular areas are noted in the location of right lobe of thyroid, abutting the right lateral and anterior wall of trachea. The confluent lesion in this location measures 2.7 x 2.3 x 1.5cm in size. A smaller enhancing area is noted in the location of left lobe of thyroid, abutting the tracheal wall, measuring 1.0 x 0.7 x 0.6cm in size. CT study reveals focal enhancing areas in the location of right and left lobes of thyroid gland, relatively larger on right side. These are seen in the last PET-CT study of 07/02/2022 Multiple calcified nodular lesions are seen in both lung fields, relatively larger and more in number in the upper lobes, suggestive of old granulomatous lesions. Fibrotic bands are also noted in both lungs. Air trapping is noted in both lung fields. Few small thin walled cysts are also noted in both lungs. No significant enlargement of mediastinal/hilar lymph nodes is seen. Few small subcentimeter sized calcified mediastinal lymph nodes are noted, consistent with old granulomatous lesions. Trachea and main stem bronchi appear normal. OPINION: CT study reveals multiple calcified nodular lesions in both lungs, more prominent in the upper lobes, suggestive of old granulomatous lesions. Few small calcified mediastinal lymph nodes are also noted. Compared to last PET-CT of 07/02/2022, there is no significant interval change. Please correlate clinically. Spleen is normal in size. Multiple small calcific nodular foci are noted in spleen, suggestive of old granulomatous lesions. Both adrenals appear normal. Right kidney is normal in position and size. Few small subcentimeter sized cysts are noted in right kidney, the largest in its upper pole measuring 0.9 x 0.8cm. The largest cyst in upper pole of right kidney shows relatively higher attenuation in non contrast sections, suggestive of a complex cyst (Bosniak type 2). There is no hydronephrosis or ureteric dilatation. Left kidney is normal in position and size. Areas of cortical scarring are noted in left kidney, more prominent in the upper polar region. A simple cyst is seen in its mid polar region in peripelvic location, measuring 2.7cm in diameter. Another small subcentimeter sized simple cyst is also noted peripherally in its mid polar region. There is no hydronephrosis or ureteric dilatation. Diffuse inhomogenous mosaic pattern enhancement is noted in the liver parenchyma in arterial phase. CT study reveals multiple homogenously enhancing intracranial extra-axial dura based nodular lesions. Compared to last PET-CT of 07/02/2022, there is no significant interval change. Please correlate clinically. -- Test Name:CECT HEAD,CECT NECK,CT CHEST WITH CONTRAST (CECT CHEST),TRIPLE PHASE CECT WHOLE ABDOMEN CECT NECK,CT CHEST WITH CONTRAST (CECT CHEST),TRIPLE PHASE CECT WHOLE ABDOMEN TRIPLE PHASE CECT WHOLE ABDOMEN Anybody willing to help?








Daughter had  not had chemotherapy and I would rather avoided it if I can. However, as I’ve hinted above, there are other harsh (….perhaps harsher?) treatments out there. Moreover, whilst hair normally grows back, your small intestines, lungs and pancreas won’t.  Many people will have to live for the rest of their life with the consequences of their cancer and its treatment.


It sometimes appears that every other cancer article involves someone undergoing chemotherapy.  I just wish someone would write an article about my daughter's small intestines and ascending colon, the malabsorption issues as a consequence of that, my missing mesenteric lymph nodes, my retroperitoneal fibrosis, not forgetting to mention my diseased liver, my left axillary lymph nodes (and the mild lymphedema I now have after their removal), her right supraclavicular lymph nodes, thyroid lesion and my daughter's hypoparathyroidism and hyperthyroidism, there may be due to that, my small lung nodule, rib lesion and pulmonary emboli or blockages which after nearly 6 years of daily blood thinning injections made the abdomen look and feel like she'd done rounds with Mary Kom who already had a couple of rounds making her body shake and she broke cups and plates and spilt water , juice and mouthwash. However, it just wouldn’t be a good picture, nor would it be as powerful as one of a person with no hair or just partial hair in the right side. Just saying!


I look well, I still have all my hair – but you should see my insides!

insides.






“Patients present in an almost surrealistic manner – a mix of tumor- related symptoms and signs, with bizarre and sometimes grotesque endocrine syndromes”


The article from 1987, when somatostatin analogues were starting to be used, must have been a hugely exciting time, perhaps more so than when peptide receptor radiotherapy (PRRT) became a thing in the 21st Century. 

In his own paper, Dr Lewis quite rightly points out the continued confusion whereby the classification of neuroendocrine tumors (NETs) has long been obfuscated by the etymology of the German word karzinoide, a misnomer if it is translated to mean that this cancer - like disease is uniformly benign. Clearly there’s still work to do to get rid of that obfuscation.


Covering the issue of patient quality of life.  Clearly there’s a balance required making therapy decisions often tough for the physician and patient, particularly when the therapy may be different across the broad spectrum of NET types and primary locations. Another area where many unmet needs still remain.


And he approaches the tricky subject of therapy sequencing with the words “This risk - benefit calculus is crucial in caring for patients whose longevity can be measured in years, if not decades, and for whom therapeutic options have multiplied to the point that the sequence of their use must be considered“. Working out the best sequencing is difficult, particularly with so many factors involved, not least the different types of NET and primary locations.  This is really a work in progress and perhaps will always be.



https://youtu.be/JrtgufwSISQ


Maryfilomena E Rita ViÃącenza I am honoured by daughter's comment "Payel Bhattacharya you are what I call a beautiful soul . You see, I knew !!!! I see such light coming from you . There is a special reason why God saved you and uses you for his glory . I am so honored to have Met you . May God bless you . You have lightened up my mind and spirit ; you see , it is 20 years from 9/11, my love of my life Til death did we part , Mark , died from being a first responder a NYPD Sgt , who got kidney cancer from working months there . This puts my gift of life into perspective once again . I like you always chose to find the flowers the birds the breeze the music in life in the lil moments of the day . I have lost so much of my light since Mark died nearly 8 years ago . This is how I have written poems in the past and more importantly how I have spoken to encourage and enlighten others in their dark moments . Thank you . I’ll pray blessings over you . 💝"




I am happy she has  a great friend too.
Friendship is one of life's greatest treasures.
Souls connected in space and time beyond any measure 

Even if we don't see each other for years

Emotions yet untold;

As time goes on, and bonds grow strong,

They will all unfold.

You are my daughter's great friend  and I am happy.
 Pray she has such friends who care for her survival 
Not good to be bickering, having ego when it concerns a life.
  Note from Payel Bhattacharya's mother




That's what I learnt in life. It's about willing to hold your hands when you need them most. I let those creatures walk away who didn't want to stay because my destiny is not tied to them.
Apart from the couple of egotistical doctors my endocrinologist blocked me for maximum security while I have stage IV metastastatic neuroendocrine cancer. says my daughter

Next week starting treatment in a new and good hospital with good doctor

Those who have a willingness to burst less Chinese crackers, have gala parties, save someone's life kindly donate. Last night too couldn't sleep because I am a Bengali and had only chicken broth.


No comments:

Post a Comment