All clear was given again ..... we are thankful, but still unclear as to why Jan has a persistent skin rash. As it is not cancer she waits a longer time to see a dermatologist, none of the cancer fast track treatment for that!
To give the historical data, Jan had a biopsy on 6th October to check for endometrial cancer. We took a lovely break to southern Europe in early October, to return on 16 Oct to a letter saying the earlier biopsy looking for suspected Paget's disease had proven clear of cancer. This was followed by a full scan and examination again on 17th Oct looking for endometrial cancer. On 23rd October we saw the oncological registrar again to be told that this was clear, but we must still wait for a dermatologist's consultation...
So good news on the cancer front, and it seems we need to do self diagnosis and treatment for the skin complaint. We did joke to the appointment secretary that the doctors were adding maximum possible delay in the hope that the condition would clear itself rather than causing them any work. She agreed with us, maybe we were too close to the truth!
Thursday, October 30, 2008
Monday, October 6, 2008
Gynaecologist
The frustration of dealing with our socialised NHS. If it wasn't that we were sure Jan was cured and further tests were purely a precaution we would be in panic. All the staff seen were charming, but the overall organisation was appalling.
Last Friday we had a phone call telling us to see a doctor at Hertford today, Monday at 10:00. We weren't told whether this would be the dermatologist on gynaecologist as we expect both. A quick Internet search showed the doctor's name was for a well respected gynaecologist.
On arrival at 10:00 the receptionist stated there was no appointment for Jan, we were completely unexpected. After an hours delay the story changed to she was expected at 11:00, but she couldn't be seen before 12:00 as the notes were still miles away at another hospital!
By 12:00 Jan saw the gynaecological registrar, who still had no notes, so Jan explained why she thought she was suffering from a reaction caused by a switch from Tamoxifen to Arimidex. They talked as an ex ward sister talking "shop" to a doctor. Tamoxifen pumps the body with "fake" female estrogens, whereas Arimidex provides none, and stops the body's production of estrogens. So the body has a shock as one goes from excess to very few estrogens, and some effects Jan has experienced tie in with what we could expect from that hormone swing.
He seemed to agree, and was unconcerned by Jan's symptoms, and did not think she had further cancers. He took a sample of the endometrium and wants an ultrasound scan as soon as we return from holiday as a precaution.
He did however state that women who had breast cancer were at higher risk of endometrial and ovarian cancer, hence he wanted to do these 2 tests......... When I look on Google I find no link at all between breast and endometrial cancer apart from that caused by Tamoxifen which is a carcinogen.
Harold Burstein, MD, an assistant professor at Harvard Medical School says: "We know there are relations between breast and ovarian cancer. We also know that the BRCA genes account for this relationship." But Burstein also underlined the other side of the news. "Women who don't have a family history of breast or ovarian cancer and are older than 49 when they are diagnosed with breast cancer have a very low risk of getting ovarian cancer."
So why do the UK doctors claim a link? Is he over simplifying for thick people or dare he not admit the dangerous risk that Tamoxifen causes endometrial cancer? ?
This is the second time the hospital have denied all knowledge of pre-booked appointments, after also losing mammograms and test results. If that record keeping is so poor we question whether we can trust their results of these tests.
Last Friday we had a phone call telling us to see a doctor at Hertford today, Monday at 10:00. We weren't told whether this would be the dermatologist on gynaecologist as we expect both. A quick Internet search showed the doctor's name was for a well respected gynaecologist.
On arrival at 10:00 the receptionist stated there was no appointment for Jan, we were completely unexpected. After an hours delay the story changed to she was expected at 11:00, but she couldn't be seen before 12:00 as the notes were still miles away at another hospital!
By 12:00 Jan saw the gynaecological registrar, who still had no notes, so Jan explained why she thought she was suffering from a reaction caused by a switch from Tamoxifen to Arimidex. They talked as an ex ward sister talking "shop" to a doctor. Tamoxifen pumps the body with "fake" female estrogens, whereas Arimidex provides none, and stops the body's production of estrogens. So the body has a shock as one goes from excess to very few estrogens, and some effects Jan has experienced tie in with what we could expect from that hormone swing.
He seemed to agree, and was unconcerned by Jan's symptoms, and did not think she had further cancers. He took a sample of the endometrium and wants an ultrasound scan as soon as we return from holiday as a precaution.
He did however state that women who had breast cancer were at higher risk of endometrial and ovarian cancer, hence he wanted to do these 2 tests......... When I look on Google I find no link at all between breast and endometrial cancer apart from that caused by Tamoxifen which is a carcinogen.
Harold Burstein, MD, an assistant professor at Harvard Medical School says: "We know there are relations between breast and ovarian cancer. We also know that the BRCA genes account for this relationship." But Burstein also underlined the other side of the news. "Women who don't have a family history of breast or ovarian cancer and are older than 49 when they are diagnosed with breast cancer have a very low risk of getting ovarian cancer."
So why do the UK doctors claim a link? Is he over simplifying for thick people or dare he not admit the dangerous risk that Tamoxifen causes endometrial cancer? ?
This is the second time the hospital have denied all knowledge of pre-booked appointments, after also losing mammograms and test results. If that record keeping is so poor we question whether we can trust their results of these tests.
Saturday, October 4, 2008
Tamoxifen allergy or Pagets?
Jan saw the oncology department again on 24th Sept. She saw yet another doctor, there has been no continuity at all in that department. This registrar seemed even less experienced and uncertain.
If Jan has an allergic reaction to Tamoxifen causing multiple skin eruptions it continues, though it is hardly any worse than at the last visit. Could the Tamoxifen or its allergic effects be taking over six weeks to purge from Jan's body? It seems to have the oncologists in panic. After the previous visit on August 13th she had to see three specialist doctors urgently within a week. This visit was no less dramatic.
The starting comment was “you should see the consultant surgeon urgently”. Jan replied, “we have a holiday booked to start in a week's time” which saw an urgent appointment to see him that same afternoon. He took a biopsy to look for the possibility of Paget’s disease, another unpleasant breast cancer. She was later phoned with an appointment to see a gynaecologist within 12 days and expects an appointment to follow to see a dermatologist and a return to the oncologist……..
So we find it alarming, certainly not re-assuring. When I use Google I find the chances are between 4 and 5 to 1 that it is a reaction to Tamoxifen rather than more cancers. The one concern I have is does the research on skin effects of Tamoxifen exaggerate those risks to make the more expensive Arimidex look safer?
In this period of doubt we plan to jet off to Portugal to relax on a warm beach! We won't know the results of the biopsy until after our return....the wonders of our NHS! Maybe it is a test of our faith in God for a full cure?
If Jan has an allergic reaction to Tamoxifen causing multiple skin eruptions it continues, though it is hardly any worse than at the last visit. Could the Tamoxifen or its allergic effects be taking over six weeks to purge from Jan's body? It seems to have the oncologists in panic. After the previous visit on August 13th she had to see three specialist doctors urgently within a week. This visit was no less dramatic.
The starting comment was “you should see the consultant surgeon urgently”. Jan replied, “we have a holiday booked to start in a week's time” which saw an urgent appointment to see him that same afternoon. He took a biopsy to look for the possibility of Paget’s disease, another unpleasant breast cancer. She was later phoned with an appointment to see a gynaecologist within 12 days and expects an appointment to follow to see a dermatologist and a return to the oncologist……..
So we find it alarming, certainly not re-assuring. When I use Google I find the chances are between 4 and 5 to 1 that it is a reaction to Tamoxifen rather than more cancers. The one concern I have is does the research on skin effects of Tamoxifen exaggerate those risks to make the more expensive Arimidex look safer?
In this period of doubt we plan to jet off to Portugal to relax on a warm beach! We won't know the results of the biopsy until after our return....the wonders of our NHS! Maybe it is a test of our faith in God for a full cure?
Friday, August 29, 2008
Ohio State rate Curcumin
Jan's mammogram results were all clear today....so we presume that her skin reaction is an allergy to tamoxifen that will die down, or do we have bedbugs? It got as far as a consultant surgeon with scalpel ready to do a biopsy, but he felt the skin was too clear for it to be cancer so held off, and wants to see Jan in 6 months time.
So we are back on diet as our main tool to limit recurrence of cancer....
I read this Ohio State University research report with interest, published in August 2008. We eat the Indian curry spice, tuneric, whose active ingredient of curcumin. So far we are part way through our second jar, which as a food costs less than a £1! Contrast that with possibly the less effective Arimidex at over £1000 p.a
It seems that the scientists are modifying the curcumin molecule, maybe paving the way for a patented drug, and big pharma moving in with funded research on what has to date been a cheap potential cure. Is that good news or bad? It makes me more certain that curcumin could be a life saver. I bet big pharma will charge more than an Indian curry!
So we are back on diet as our main tool to limit recurrence of cancer....
I read this Ohio State University research report with interest, published in August 2008. We eat the Indian curry spice, tuneric, whose active ingredient of curcumin. So far we are part way through our second jar, which as a food costs less than a £1! Contrast that with possibly the less effective Arimidex at over £1000 p.a
It seems that the scientists are modifying the curcumin molecule, maybe paving the way for a patented drug, and big pharma moving in with funded research on what has to date been a cheap potential cure. Is that good news or bad? It makes me more certain that curcumin could be a life saver. I bet big pharma will charge more than an Indian curry!
Thursday, August 28, 2008
Where do cows get calcium from?
Jan now takes Arimidex, known to cause osteoporosis. So I looked at Professor Jane Plant's book on osteoporosis. I like the discussion here, where a vested interest from the dairy industry challenged her hatred of dairy products. I like her response .. " Where do cows or hippopotamus get their calcium from?"
The doctors assume that extra calcium intake is necessary, have put Jan on calcium supplements and many seem worried if one stops taking dairy products. It is interesting that cows are vegetarians, yet have adequate calcium!
Jan still has itchy skin eruptions at what seem to be random areas of her body. We wonder if it is an allergic reaction to Tamoxifen? In the meantime Jan had mammograms of both breasts to check for cancer......results expected tomorrow.....can it be that efficient?
I read three papers on how the body metabolises Tamoxifen, two of the three reckon it takes 10 or 14 days before blood concentrations drop to half after one stops taking it. Jan stopped 2 weeks ago, so maybe it is reasonable the Tamoxifen is still causing a skin rash. Odd that the consultant worried that Jan had stopped for just 4 days earlier, as though she was unaware of how slowly it was excreted from the body.
The doctors assume that extra calcium intake is necessary, have put Jan on calcium supplements and many seem worried if one stops taking dairy products. It is interesting that cows are vegetarians, yet have adequate calcium!
Jan still has itchy skin eruptions at what seem to be random areas of her body. We wonder if it is an allergic reaction to Tamoxifen? In the meantime Jan had mammograms of both breasts to check for cancer......results expected tomorrow.....can it be that efficient?
I read three papers on how the body metabolises Tamoxifen, two of the three reckon it takes 10 or 14 days before blood concentrations drop to half after one stops taking it. Jan stopped 2 weeks ago, so maybe it is reasonable the Tamoxifen is still causing a skin rash. Odd that the consultant worried that Jan had stopped for just 4 days earlier, as though she was unaware of how slowly it was excreted from the body.
Tuesday, August 19, 2008
Holiday plans / doctors appointments
Good news and bad news.
About a week ago Jan reckoned she had overcome the fatigue that started after radiotherapy. She gave me permission to book our first foreign holiday after her treatment. But her recent concerns over possible recurrence leaves us doubtful....so I will hang on whilst our pound devalues even further!
This is because the hospital wrote yesterday offering a bone density scan in 2 days time......such short notice, or is it speedy service? We will slip that back, as Jan has gone off to the Suffolk coast for a week, and we want to believe cancer cannot recur so fast and there is no need to panic. But yet again we plan our diary around doctor's consultations....the curse of cancer... the holiday will have to wait....
About a week ago Jan reckoned she had overcome the fatigue that started after radiotherapy. She gave me permission to book our first foreign holiday after her treatment. But her recent concerns over possible recurrence leaves us doubtful....so I will hang on whilst our pound devalues even further!
This is because the hospital wrote yesterday offering a bone density scan in 2 days time......such short notice, or is it speedy service? We will slip that back, as Jan has gone off to the Suffolk coast for a week, and we want to believe cancer cannot recur so fast and there is no need to panic. But yet again we plan our diary around doctor's consultations....the curse of cancer... the holiday will have to wait....
Cheap cancer cures in our diet
Thanks to Kelly's comments on my last post for two tips. I see she also had treatment in London....
1) We knew about resveratrol, but had been getting it from red wine at over £3 a bottle and red grapes at £5 a kilo. Seems the supplements are a far cheaper source. What a shame, we even visitited a vineyard last week and were getting into wine! This article claims the supplement may be not only cheaper but better
I know Nottingham University are looking at resveratrol as an arthritis and cancer cure, here is a UK based NHS trial of its use against cancer.
2) We were unaware of DCA. Seems it could be another wonder drug, but lacking big pharma support as it cannot be patented. It has a whole discussion forum here.
Its sale as a cancer cure was banned in the US by the FDA, but is now available again. I do note that it may cause liver cancers, so take care!
It is interesting that DCA may be only slowly developed as big pharma has no interest in a drug that cannot be patented. Rings true to me, which is also why we have taken so much info from University Professors, who do not have such a profit motive in their work and research.
1) We knew about resveratrol, but had been getting it from red wine at over £3 a bottle and red grapes at £5 a kilo. Seems the supplements are a far cheaper source. What a shame, we even visitited a vineyard last week and were getting into wine! This article claims the supplement may be not only cheaper but better
I know Nottingham University are looking at resveratrol as an arthritis and cancer cure, here is a UK based NHS trial of its use against cancer.
2) We were unaware of DCA. Seems it could be another wonder drug, but lacking big pharma support as it cannot be patented. It has a whole discussion forum here.
Its sale as a cancer cure was banned in the US by the FDA, but is now available again. I do note that it may cause liver cancers, so take care!
It is interesting that DCA may be only slowly developed as big pharma has no interest in a drug that cannot be patented. Rings true to me, which is also why we have taken so much info from University Professors, who do not have such a profit motive in their work and research.
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