More Decisions...and info
Hello First Class droids,
I wanted to share a few other pieces of information and associated questions in my mind.
- A breast cancer survivor told me: "Really, just get rid of it and be as aggressive as possible. They thought they had all of the bad cells from me too, and they used dye and everything, but less than a year later, it reappeared. "
- A friend oncologist wrote to me: "I am not sure where you stand with surgical/fertility decisions. I, though, pause and worry about you delaying your definitve treatment for too long."
- A close friend told me tonight (having asked an uncle who's an oncologist who's read up about adenosarcoma and who talked to GYN oncologists - and I believe one that's treating a patient for adenosarcoma, and a grandfather who is a retired radiologist, working with cancer patients): "Both said that anything but a hysterectomy is too big a risk at this time. Sarcomas don't respond well to traditional cancer treatment, so if they spread or come back, the prognosis is very poor. They say that I can forget about radiation if she doesn't get it out now, that surgery is my best shot at a cure. They haven't looked at my pathology slides but here's the thing, they don't seem to care..."
The main reasons that they gave seem to be:
- It's so rare that there's no data to base any decision on
- The "Sarcoma" aspect - which I already told you about...it's the jumping thing, not sure if it has a name...so the risk of the cancer spreading looks too high in their opinion.
And if I were my oncologist's daughter, I would be sterile by the end of this month.
I can't believe that my oncologist is suggesting to me an option that would be obviously wrong.
Anyway - I thought that this was a tad worrying. I will chat with these people tomorrow morning, chat with my oncologist about those opinions to see what she has to say (since the tumor board seems to be just fine with the idea of a trachelectomy right now), hear what the other tumor boards think, probably go through the trachelectomy since new info will be available after that, and then decide about next steps.
I remember my oncologist's words on the phone after the tumor board meeting: "we have discussed your case at length during our tumor board meeting. For quite a long time actually, and I believe that this is good news for you, but we think that you do not need a radical hysterectomy AT THIS TIME"
- Anything in there that I may have misunderstood??? -
If you have opinions, other references or suggestions, feel free to either post them as comments (which may trigger thoughts from other readers), or e-mail me!
(and some additional info:
So...I recall Oncologist #1 telling me: "You have an adenosarcoma, or a malignant adenosarcoma" which I thought was redundant.
If it is a malignant adenosarcoma, does this mean that it is malignant Mullerian mixed tumor? What's the difference between the two?
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=6277257&dopt=Abstract
A case of heterologous Mullerian adenosarcoma of the uterus is presented with emphasis on morphologic differentiation, clinical course, prognosis, and treatment. This tumor was described first by Clement and Scully in 1974. Since that time 36 cases have been reported in the literature. The neoplasm consists of benign epithelial and malignant mesenchymal elements. The latter are composed of tissue with homologous and heterologous differentiation. Our microscopic and ultrastructural studies suggested that the heterologous elements were rhabdomyoblasts with a variable degree of differentiation. According to the literature the prognosis of Mullerian adenosarcoma is better than that of malignant mixed Mullerian tumor. The location of the tumor - whether intrauterine or extrauterine - seems to be more important as regards prognosis than the differentiation of the sarcomatous elements. The clinical course in our patients was not different from those described in the literature. Surgical removal of the tumor remains the treatment of choice. Some authors report a better survival rate when surgical treatment is followed by radiotherapy. Chemotherapy may be useful in cases of local or distant metastasis, and in cases of incomplete excision of the tumor mass.
***************************
I experienced vaginal bleeding, there was a uterine polyp which was removed during the first surgery which was a polypectomy and a cervical mass. Hmm...2% of the time originating in the cervix? Wow...My oncologist said that it had a 50% chance of recurring. I take it that this is so so news?
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9625851&dopt=Abstract
Section of Gynecologic Medical Oncology, The University of Texas M.D. Anderson Cancer Center, Houston, TX 77030, USA.
The records of 41 patients diagnosed with adenosarcoma of the female genital tract between 1982 and 1996 were reviewed. The median age at diagnosis is 51 years (range, 14-84). The most common symptom is vaginal bleeding (71%). Clinical signs at presentation include pelvic mass (37%), uterine polyps (29%), and enlarged uterus (22%). In 71% of patients, the tumor originates from the uterus. Other sites include ovary (15%), pelvis (12%), cervix (2%). A history of thyroid cancer, benign ovarian cyst, and polycystic ovarian disease is found more frequently than expected in this patient population, whereas no relationship to endometriosis is observed. Surgery is the mainstay of treatment, but platin-based chemotherapy given upfront in inoperable patient has definite efficacy. An overall response rate of 92.5% was observed after primary therapy (surgery with or without radiotherapy, and/or chemotherapy), with a median survival of 48 months (range, 1-174). Thirty-eight percent of patients had recurrent disease. The median time to recurrence is 12 months (range, 5-132). Although 60% of patients with recurrence achieved a complete remission after treatment, only 1 (8%) is alive without disease, and 3 (22%), with disease at the time of this analysis. In our series, histologic sarcomatous overgrowth is a predictor of poor prognosis (p<0.03),>)
About soft-tissue sarcomas. However, these are not adenosarcomas and not the uterine/cervical type. My oncologist said that there was data for sarcomas in other parts of the bodies, other types of sarcomas or other types of cancer in that area of the body but nothing that really combines everything. So all this data is to take with a grain of salt. Basically, they have no real clue it seems :)
It also says that low grade/high grade diagnosis is hard to make since this is a heterogenous tumor, eg, some of it may be low grade and some of it may be high grade and it's hard to know because the biopsy may remove only low grade portions.
Sounds like the main difference for the staging of a Sarcoma is that grade (and size) is incorporated in the determination of the stage. Interesting still.
http://telescan.nki.nl/start/chapt-01/chap1-4.html
http://telescan.nki.nl/start/chapt-01/chap1-6.html#6.1
I wanted to share a few other pieces of information and associated questions in my mind.
- A breast cancer survivor told me: "Really, just get rid of it and be as aggressive as possible. They thought they had all of the bad cells from me too, and they used dye and everything, but less than a year later, it reappeared. "
- A friend oncologist wrote to me: "I am not sure where you stand with surgical/fertility decisions. I, though, pause and worry about you delaying your definitve treatment for too long."
- A close friend told me tonight (having asked an uncle who's an oncologist who's read up about adenosarcoma and who talked to GYN oncologists - and I believe one that's treating a patient for adenosarcoma, and a grandfather who is a retired radiologist, working with cancer patients): "Both said that anything but a hysterectomy is too big a risk at this time. Sarcomas don't respond well to traditional cancer treatment, so if they spread or come back, the prognosis is very poor. They say that I can forget about radiation if she doesn't get it out now, that surgery is my best shot at a cure. They haven't looked at my pathology slides but here's the thing, they don't seem to care..."
The main reasons that they gave seem to be:
- It's so rare that there's no data to base any decision on
- The "Sarcoma" aspect - which I already told you about...it's the jumping thing, not sure if it has a name...so the risk of the cancer spreading looks too high in their opinion.
And if I were my oncologist's daughter, I would be sterile by the end of this month.
I can't believe that my oncologist is suggesting to me an option that would be obviously wrong.
Anyway - I thought that this was a tad worrying. I will chat with these people tomorrow morning, chat with my oncologist about those opinions to see what she has to say (since the tumor board seems to be just fine with the idea of a trachelectomy right now), hear what the other tumor boards think, probably go through the trachelectomy since new info will be available after that, and then decide about next steps.
I remember my oncologist's words on the phone after the tumor board meeting: "we have discussed your case at length during our tumor board meeting. For quite a long time actually, and I believe that this is good news for you, but we think that you do not need a radical hysterectomy AT THIS TIME"
- Anything in there that I may have misunderstood??? -
If you have opinions, other references or suggestions, feel free to either post them as comments (which may trigger thoughts from other readers), or e-mail me!
(and some additional info:
So...I recall Oncologist #1 telling me: "You have an adenosarcoma, or a malignant adenosarcoma" which I thought was redundant.
If it is a malignant adenosarcoma, does this mean that it is malignant Mullerian mixed tumor? What's the difference between the two?
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=6277257&dopt=Abstract
A case of heterologous Mullerian adenosarcoma of the uterus is presented with emphasis on morphologic differentiation, clinical course, prognosis, and treatment. This tumor was described first by Clement and Scully in 1974. Since that time 36 cases have been reported in the literature. The neoplasm consists of benign epithelial and malignant mesenchymal elements. The latter are composed of tissue with homologous and heterologous differentiation. Our microscopic and ultrastructural studies suggested that the heterologous elements were rhabdomyoblasts with a variable degree of differentiation. According to the literature the prognosis of Mullerian adenosarcoma is better than that of malignant mixed Mullerian tumor. The location of the tumor - whether intrauterine or extrauterine - seems to be more important as regards prognosis than the differentiation of the sarcomatous elements. The clinical course in our patients was not different from those described in the literature. Surgical removal of the tumor remains the treatment of choice. Some authors report a better survival rate when surgical treatment is followed by radiotherapy. Chemotherapy may be useful in cases of local or distant metastasis, and in cases of incomplete excision of the tumor mass.
***************************
I experienced vaginal bleeding, there was a uterine polyp which was removed during the first surgery which was a polypectomy and a cervical mass. Hmm...2% of the time originating in the cervix? Wow...My oncologist said that it had a 50% chance of recurring. I take it that this is so so news?
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9625851&dopt=Abstract
Section of Gynecologic Medical Oncology, The University of Texas M.D. Anderson Cancer Center, Houston, TX 77030, USA.
The records of 41 patients diagnosed with adenosarcoma of the female genital tract between 1982 and 1996 were reviewed. The median age at diagnosis is 51 years (range, 14-84). The most common symptom is vaginal bleeding (71%). Clinical signs at presentation include pelvic mass (37%), uterine polyps (29%), and enlarged uterus (22%). In 71% of patients, the tumor originates from the uterus. Other sites include ovary (15%), pelvis (12%), cervix (2%). A history of thyroid cancer, benign ovarian cyst, and polycystic ovarian disease is found more frequently than expected in this patient population, whereas no relationship to endometriosis is observed. Surgery is the mainstay of treatment, but platin-based chemotherapy given upfront in inoperable patient has definite efficacy. An overall response rate of 92.5% was observed after primary therapy (surgery with or without radiotherapy, and/or chemotherapy), with a median survival of 48 months (range, 1-174). Thirty-eight percent of patients had recurrent disease. The median time to recurrence is 12 months (range, 5-132). Although 60% of patients with recurrence achieved a complete remission after treatment, only 1 (8%) is alive without disease, and 3 (22%), with disease at the time of this analysis. In our series, histologic sarcomatous overgrowth is a predictor of poor prognosis (p<0.03),>)
About soft-tissue sarcomas. However, these are not adenosarcomas and not the uterine/cervical type. My oncologist said that there was data for sarcomas in other parts of the bodies, other types of sarcomas or other types of cancer in that area of the body but nothing that really combines everything. So all this data is to take with a grain of salt. Basically, they have no real clue it seems :)
It also says that low grade/high grade diagnosis is hard to make since this is a heterogenous tumor, eg, some of it may be low grade and some of it may be high grade and it's hard to know because the biopsy may remove only low grade portions.
Sounds like the main difference for the staging of a Sarcoma is that grade (and size) is incorporated in the determination of the stage. Interesting still.
http://telescan.nki.nl/start/chapt-01/chap1-4.html
http://telescan.nki.nl/start/chapt-01/chap1-6.html#6.1
posted by Finance Monkey at 9:25 AM
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