1st hand experience of a non-medical researcher

My wife had been suffering from chronic abdominal pains since last three years. However as there’s a tendency by women to ignore these symptoms till they grow, she first consulted doctor in February 2006. Multiple ovarian chocolate cysts had been found and were finally removed by laparotomy in May 2007.

But a post-operative Ultra-Sonography (US) again indicated, and I quote ‘Residual ‘grapes-like’ cystic vacuoles at both sides of lower abdomen with omental adhesion & pockets of fluid filled spaces at both adnexa & towards Pouch of Doughlas’ prompted the doctor to prescribe few more tests because the case was already complex, and not clearly diagnosed even before operation as it clearly suggested a recurrence.

Now why this delay in operation, and what treatment did she had in between and the post-operative findings make an interesting case. More so the post-operative developments based on US findings.

However what prompted me to take to Internet in a more structured manner were the words that the doctor with decades of experience had stated on 2nd July: ‘the case is quite unique. In developed world, the case would have by now raised an uproar and interest from medical fraternity to pursue active research into it. I have discussed with many of my colleagues here, sort of have an informal medical board also; but all seemed to be at a loss.’ When my wife, Mithu also went for the post-operative US, the doctor was a bit irritated as she didn’t carry all previous records (a big file by now), and the doctor showed his interest to get all previous slides to write a case on her records.

And I happen to be a researcher – true without any understanding of medical or relevant world. But I knew from past experience that doing meaningful research in unknown areas is also not difficult. And then I probably had some luck with different types of keyword search (cyst, pain, recurrence, grape-like), advanced search and exact word searches based on the symptoms as within hours I found a paper with exact findings like our case. And once I found one similar but rare case, I found better keyword leads to do exact word search, more and more cases came up. And in two to three days, I collected some ten full papers from Google Scholar (“cystic mesothelioma of the peritoneum” in Google scholar yielded some 140 exact word matches), another some 60 case abstracts where full paper was under paid content. I took printout of all those (some 250-pages), highlighted them with a marker, made a one-page summary sheet and again visited this caring, loving doctor on 7th July.

I was becoming more and more certain, from a layman’s perspective although, that the tumor is Benign Cystic Mesothelioma (a rare case, difficult to diagnose and with at most 130-140 reported cases in literature); however I was also confused because the fine line of difference of this from Lymphangioma or other similar alternatives is not that a non-medical person can apprehend.

I also had the apprehension that our doctor may misunderstand my research-based findings, because a little learning can be a dangerous thing. So I had to choose my words carefully for the first few seconds; and as I shouldn’t take lot of his time, I need to present the right papers first.

And seeing those papers, the doctor also was sort of certain that the case is Benign Cystic Mesothelioma, within first couple of minutes. He was at times speaking to himself – yes, this was there…and this too…everything matches. And then observing my presence stated ‘you won’t appreciate these things as a non-medico; but the analogies are too strong’. Though he still suggested that we consult another pathologist with case history with the papers I presented him (as he commented that otherwise it may again be difficult in-spite of the credibility of this pathologist), I see a strong light of hope.

The doctor also asked me how I accessed the library, and I informed briefly. However our doctor being old, I am not sure whether he himself accesses net or not. My guess would be on the negative side. The belief is also based on the fact that had our doctor himself accessed net, he may have found this rare case. Still that’s a possibility only.
Thanks to Internet…and thanks to doctors & publishers, who shared their full papers or even abstracts online free of cost. And less is said about some other publishers who didn’t  even share the abstract – the better.

A brief case background here:
 
The first doctor whom my wife consulted decided it’s a common open-and-shut case, as cysts normally are. A laparoscopy or laparotomy needs to be done to remove the cysts. He also gave few intravenous injections suspecting some infection prior to that. US reports confirmed the cyst in multiple exams before and after the injections.

However my wife, having undergone a cesarean earlier when our son was born (6 years old now) was against laparotomy; and wanted oral therapy or at best laparoscopy. Not being sure whether the size of the cyst can be removed successfully by laparoscopy, she consulted another doctor, with whom we were even more acquainted with.

Both these doctors are the same whom we consulted when she was pregnant with our son, and that time also we moved from the 1st doctor to the 2nd doctor for no apparent reasons. Wife of one of my friend is a gynecologist, she recommended the 2nd doctor and so did couple of friends of my wife. 95% of the time, she received treatment with this 2nd doctor for now and even when our son was born; and we are glad to get his expertise in our case. This 2nd doctor retired few years back, and was the head of the department of one of the best medical colleges, and probably of the best medical college in Kolkata in his career earlier.

Based on her wishes, and earlier records, she did undergo few more round of oral/intravenous medications. As my wife strongly desired one more issue, and the 2nd doctor also suggested that conceiving may naturally cure these ailments (as no permanent cure exists for most cysts). The objective was to facilitate conceiving and/or reducing the size of the cysts (maximum was around 10cm in one side) so that a laparotomy can be avoided.

However as most of the oral therapy and injections failed, a laparoscopy was needed in the end of April to remove the confirmed ovarian cysts. Confusion was about the mass-work of lesions other than those. In between, some 9-odd US (few of TVS type. During one such tests, the doctor even sounded tired of repeating the tests without any firm conclusions; and told us that the night before he sat on the net for hours to get some clues; unfortunately he didn’t get any) were done; and lately all these USs confirmed presence of a wide-spread of interlacing septations/mass-work around the peritoloneum without being specific what it was, other than mentioning different sizes of the ovarian cysts of which the doctor was anyway sure of. Couple of the reports hinted at pseudomyoxoma peritineii, but didn’t confirm anything.

The agony of waiting for critical medical reports:

And I remember on those days, when I returned from office, I saw tears in the eyes of my wife; because she collected the reports at times, & did some search on the net (as she did for pseudomyoxoma peritineii). She knew that pseudomyoxoma peritineii could be a fatal disease. I would try to do some more reading, but the terms being all Latin and Greek didn’t make much sense to me. I am sure my wife also visited many online forums where both patients and experts have meaningful dialogs for better medical and psychological therapy. A lot of words from many suffering patients with symptoms also do help.

So a laparoscopy was performed in 30th April 2007. However in-between the laparoscopy, rather than removing the ovarian cysts, the doctor advised us that things are not looking good due to the wideapread mass-work of unidentified lesions, collected small samples of the ovarian cysts and the many-grape like structures of the lesion; and advised we do biopsy before the doctor can correctly diagnose the problem (Subsequently even one of the paper that I accessed online also suggested that’s the best course as laparoscopy may be controversial for these cases).

The same tense moments awaited us, more so to my wife (as I was having some engagement in office to put my mind off the case for some time at least), when the time to collect the biopsy report came for which I went to the pathology center. I was still not familiar with the term ‘benign’ by then; and the delivery of the report was delayed by almost an hour. Our doctor also said to call him the same evening as he was also anxious. My wife repeatedly told me to phone her as soon as I receive the report, I told her I won’t but was feeling some philosophical thoughts myself while awaiting the report at the center. The center had a good culture where the patients/their family members could get a layman’s understanding of the case from the overall in-charge of the center. So as soon as I got the report, rather than trying myself to make sense of the microscopical examinations and summary impression, I rushed to the doctor.
And the doctor said – there are cysts. But it’s not serious. It’s NOT cancer!

In that one hour of waiting period, I received couple of SMSs from Mithu, and also answered them (unlike many young age couples, who love to use their cells, both of us feel mobile to be a nuisance mostly and don’t unnecessary call others) stating our report has not yet come to the dispatch center. And with that assurance of the doctor, I immediately called her, and said what the doctor told me. Well, by then I had a glance at the content of the report. And that same night, we informed the doctor also on the biopsy report.

As the report showed ‘benign’ material, a laparotomy was carried out on 20th May. Both the chocolate cysts and the grape-like substances were removed. During the laparoscopy, I saw the images of those grape-like substances from outside the OT. After the laparotomy, the doctor again showed us the identified chocolate cysts and the unidentified grape-like transparent substances in a small bowl, probably of more than 200 ml or even more.

Another round of biopsy (three samples) was carried out. The ‘tissue from cystic lesions involving pelvis and adherent to large gut’  had a gross finding of ‘multiple multilocuted thin-walled cysts’. Microscopical examinations stated ‘Multiple sections examined. The cysts and locules are lined by flattened endothelial cells. The locules contan pink homogeneous material (lymph). The walls of the cysts infiltrated by lymphocytes and few haemosiderin containing macrophages. No scolex and no laminated hyaline membrane of Hydrated cyst found’. And the impression was ‘Cystic lymphangioma, pelvis’.

However couple of US earlier for the ‘retroperitoneum, and peritoneum and lower pleural space’ earlier observed that ‘no detectable evidence of enlarged lymph nodes noted’.
Then came the post-operative US finding (27/6/07) of recurrence of the grape-like substances within a month of their removal. (the summary one-page case history page is attached below).

We may still not be certain that the case is indeed of Benign Cystic Mesothelioma. Today, I submitted the biopsy slides along with our Doctor’s reference letter to the pathologist. However he just kept the summary sheet (he asked me whether I am a doctor and I firmly said ‘no’), just one of the many papers I collected (didn’t even glance at others), and all the US/Biopsy reports and other test reports. I will know his opinion on day after tomorrow.  If it indeed be Benign Cystic Mesothelioma, it’s not fatal, but serious and may demand repeat treatments – surgical or oral. The purpose of writing this here:

  1. Sharing an experience where layman like us can also do meaningful research when doctors and experts may be at a loss. What must be kept in mind, with all due respect for doctors, is no one would explore and invest as much time as family-members of patient would do for rare doubtful cases. And getting the right specific information in net has some amount of luck involved as well, more so when the information and case may be rare.
  2. Possibility of reaching out to Doctors all over the world having research interest in Benign Cystic Mesothelial Cysts (I have a lot of e-mails of authors who published papers here) so that they may share/help with more relevant findings.
  3. Even patients who had this Benign Cystic Mesothelioma can share their experience of different treatments as, to my finding, no absolutely accepted remedy may be there. There are different treatments, and different results as given in literature.

Internet can save lives and even help in correct diagnosis…in many ways. Above is not yet a proven case for that. However the early signs as of now are good.

Never lose hope…try different searching for medical cases not clearly identified…it’s a rarity if something of human knowledge anywhere is not on the net.

Summary of Case History (documented by non-medico professional through  prior records/findings and from internet search of similar cases)
 

  1. Sex: F                                           Age – 33        Prior surgical record: Yes
  2. Any other prior record: chronic abdominal pain worsening during cycle, excessive bleeding during cycle with bloodclots
  3. Findings: - 9 US done from 2/5/06 to 27/6/07.  Salient points are:
    1. Septated cystic lesion in both ovaries observed from beginning. In the beginning, Adnexa, though was reported to be clear and no obvious mass lesion changed on the report of 09/02/07 when first it stated formation of tiny pockets of cystic spaces followed by wide-spread ‘mass-lesion’/mass-work. No lymph nodes were also noted in few US reports. Lupride depot 3.75 mg course completed in end-August’06. And there’s been other courses for infections as well – both in the beginning and in between.
    2. Surgical findings: Chocolate cyst and grape like structures. Biopsy report from the ‘grape-like’ lesion reported Multiple multolocuted thin walled cysts with flattened endothelial cells, and also noted presence of lymphocytes. It concluded it as cystic lymphangioma. All of the five samples were of ‘benign’ nature, CA-125 was 79.78, and test of Echinococcus IgG ( for Echinococcus cyst?) was also –ve.
    3. Post-operation US finding: Residual grapes like cystic vacuoles & pockets of fluid. No abdominal pain till now in patient compared to earlier pain, however surgical pain may be there
  4. Possible alternatives:
    1. Cystic Lymphangioma, as suggested in biopsy report – however occurs in predominantly in male children, and also US reports failed to mention any lymph nodes
    2. Tuberculous Salpingitis/Other forms – almost always secondary to tuberculous (TB) infection elsewhere in the body (no case here), mostly in fallopian tube. However the main symptoms of genital TB are infertility, menstrual disorders (especially amenorrhoea) and pain do match.
    3. Pseudo-myoxoma peritineii (suggested in couple of US reports) – thick walls whereas biopsy reported thin walls; and case biopsy report indicated benign nature.
    4. Benign Cystic Mesothelioma of the Peritoneum – a rare difficult to diagnose case was based on following commonalities, in almost all cases:

                                                               i.      Age group and sex of patient – matches perfectly, mostly takes place on women of child bearing age                                                             ii.      Prior surgical record

                                                            iii.      Extremely difficult to diagnose through US/CT, rare case and therefore difficult to identify. Confirmation of mesothelial nature only through immunohistochemistry or electron microsocopic (from lymphangiomas).

                                                           iv.      Grape like structure

                                                             v.      Abdominal pain and mass work are most common symptoms –

                                                           vi.      Flattened or cubodial structure – thin wall – fluid filled

                                                          vii.      Non-Neoplastic (couple of literature however categorized it as Neoplastic)/neoplasm/cytoplasm/watery fluid filled

                                                        viii.      Rare disease – 130-140 reported in literature all over the world

                                                           ix.      Chances of recurrence very high unless complete resection done – from one-six months to many years (30-50%)

                                                             x.      Couple of reports suggested Tamoxifen as remedy with various other oral or surgical alternatives – all experimental. Disease not fatal, but serious however can become malignant in rare cases. Our Patient took Danazol for couple of months. 100% positive for calretinin, but only a few cases are positive for estrogen and progesterone receptors. However no gross agreement on therapy cure till date, four papers talked about Tamoxifen.
 
Standard Disclaimer/Notice: Above article is not written by any doctor or medical professional. The right context needs to be kept in mind; and all relevant net-based findings must be checked with doctor.
 
 
Ranjit Goswami is a research scholar with the Indian Institute of Technology (IIT), Kharagpur, India; and is the author of the book “Wondering Man, Money & Go(l)d’“.

 

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