Even though radiation burns had largely healed and swelling subsided 2+ weeks ago, stinging and burning is still happening, indeed it is worse these last 3 days than it was last week. It appears to develop & flair up overnight.
I am still treating with aqueous cream, along with vitamin E cream & tea tree oil on a daily basis. The burning appears to develop overnight. I could swear that the mass has still further shrunk since the MRI scan two weeks ago.
I was also told on Tuesday that the tumour was now 12 1/2 cm on its largest axis. It was previously scanned as being 15 cm. I also think it may have further grown by a couple of cm between between the original MRI scan in June and the commencement of radiotherapy in August. I have read of liposarcomas 13 inches (33 cm) being resected.... that is big!!
The tumour is now nice & soft too. I barely notice it while travelling on the ferry. Actually the main area of discomfort is in the groin region of the thigh, however I think that is caused by a different disease process. As I keep saying..... more later ;) LOL.
cheers
Rob
Friday 26 October 2007
Surgery....
On Monday I received a call from the hospital asking me to come in and see a doctor on Tuesday morning. I was just given the doctor's name and outpatient's ward number. A quick scan of the phone directory revealed the outpatients ward focussed on ENT, head & neck problems & plastic surgery. I had been previously told by the orthopedic doctors that a plastic surgeon would be required due to the large size of the tumour. The tumour's resection will leave quite a large hole.
I saw the plastic surgeon doctors on Tuesday morning and, at first glance, it appears that I am in for quite an ordeal. To pack the wound the doctors will have to remove muscle & skin tissue from elsewhere and transplant to my leg. I was told that a muscle will be removed from my back, below the shoulder, along with its blood supply & nerve to be transplanted to my leg. The doctor told me that this should leave me a bit fatigued from time to time in my right arm.
I have to comment that the whole situation is somewhat bewildering. Presently, apart from some swelling in my right thigh and a bit of pain from time to time, I can walk & run ok & generally feel good, though a bit fatigued from the late afternoon onward, due to the aftermath of radiotherapy; in other words less 'gas in the tank'. Though when the fatigue does suddenly occur I do have to lie down to avoid mischief to my body. I also have some respiratory symptoms, possibly as a result of radio therapy.
Overnight I am going to be transformed from a reasonably well person into a partially disabled person, though hopefully most function will eventually return. I have been told that it will take 8 to 10 weeks to recover from surgery.
While all this might seem like an ordeal, surgery will save my leg. In fact this surgical process is called 'limb sparing' surgery. A few years ago when one of my GP's suggested I had a lipoma in the same thigh I carried out an internet search on lipomas, as I didn't have a clue what a lipoma was. Lipomas are benign fatty growths that resemble tumours. On that occasion I read that malignant lipomas resulted in automatic amputation. Lipomas are very similar to liposarcomas.
On Tuesday the radio-oncologist, who previously treated me, was visiting the head & neck clinic in the same ward and had a bit of a talk to me and a couple of med students he had with him, explaining all this too. He later had another talk with both myself and the plastic surgeons explaining the history of the treatment of sarcomas which, until recent years was immediate amputation... thus the term 'limb sparing surgery'.
Surgery is tentatively set down for 6 November, Melbourne Cup day.
In a sense it's a shame that this cancer should develop at this time. When the orthopedic surgeon appeared reticent the other week I carried out Google search on the alternatives and discovered that there have been at least two drugs trialled with varying degress of success on liposarcomas. In one to two years time, automatic resection may be a thing of the past too. I'm still intending to blog a little bit more on liposarcomas & their treatment.
[Edit: Further reading on this subject indicates that while new treatments are being trialled with success, resection still appears to be the primary initial option.]
Cancer is such an obnoxious & insidious disease. That mutating fat cells in my leg show grow into such a large and fast growing blob is incredulous.
One has to be philosophical at this point in time to avoid being overwhelmed by all this. More later.
Cheers
Rob
I saw the plastic surgeon doctors on Tuesday morning and, at first glance, it appears that I am in for quite an ordeal. To pack the wound the doctors will have to remove muscle & skin tissue from elsewhere and transplant to my leg. I was told that a muscle will be removed from my back, below the shoulder, along with its blood supply & nerve to be transplanted to my leg. The doctor told me that this should leave me a bit fatigued from time to time in my right arm.
I have to comment that the whole situation is somewhat bewildering. Presently, apart from some swelling in my right thigh and a bit of pain from time to time, I can walk & run ok & generally feel good, though a bit fatigued from the late afternoon onward, due to the aftermath of radiotherapy; in other words less 'gas in the tank'. Though when the fatigue does suddenly occur I do have to lie down to avoid mischief to my body. I also have some respiratory symptoms, possibly as a result of radio therapy.
Overnight I am going to be transformed from a reasonably well person into a partially disabled person, though hopefully most function will eventually return. I have been told that it will take 8 to 10 weeks to recover from surgery.
While all this might seem like an ordeal, surgery will save my leg. In fact this surgical process is called 'limb sparing' surgery. A few years ago when one of my GP's suggested I had a lipoma in the same thigh I carried out an internet search on lipomas, as I didn't have a clue what a lipoma was. Lipomas are benign fatty growths that resemble tumours. On that occasion I read that malignant lipomas resulted in automatic amputation. Lipomas are very similar to liposarcomas.
On Tuesday the radio-oncologist, who previously treated me, was visiting the head & neck clinic in the same ward and had a bit of a talk to me and a couple of med students he had with him, explaining all this too. He later had another talk with both myself and the plastic surgeons explaining the history of the treatment of sarcomas which, until recent years was immediate amputation... thus the term 'limb sparing surgery'.
Surgery is tentatively set down for 6 November, Melbourne Cup day.
In a sense it's a shame that this cancer should develop at this time. When the orthopedic surgeon appeared reticent the other week I carried out Google search on the alternatives and discovered that there have been at least two drugs trialled with varying degress of success on liposarcomas. In one to two years time, automatic resection may be a thing of the past too. I'm still intending to blog a little bit more on liposarcomas & their treatment.
[Edit: Further reading on this subject indicates that while new treatments are being trialled with success, resection still appears to be the primary initial option.]
Cancer is such an obnoxious & insidious disease. That mutating fat cells in my leg show grow into such a large and fast growing blob is incredulous.
One has to be philosophical at this point in time to avoid being overwhelmed by all this. More later.
Cheers
Rob
Friday 19 October 2007
The Path Ahead....
At long last I saw the orthopedic doctors. As I mentioned in my previous post, time is almost up to resect the tumour to gain maximum benefit from radiation therapy. The doctor soon realised that, and now it's all rush organise surgery, which I was told will either be next Thursday (18 Oct) or the following Tuesday (23 Oct). They have to organise a plastic surgeon too, as the resection of the tumour will leave a massive hole in my thigh. I face an 8 week recovery period following surgery. So I will be out of the loop for a while.
I'll have quickly carry out a bit of preparation too. This time I was told I would be in hospital a week and 8 weeks before I can drive. Thus I'll have to organise a few things such as deciding about care for my cat. If I'm only in hospital a week, a neighbour can probably feed him. Knowing the hospital I could be in hospital any amount of time from a few days up to 3 weeks. In my experience of them they never plan anything before hand. The hospital will only plan my after care the day before discharge, community health services etc. Living by myself has caused problems with aftercare in the past, e.g. I should have had community ambulance transport home after my biopsy, they didn't think to ask or plan before hand. I made it home awkwardly & painfully by public transport on that occasion. I've been raising these issues every time I have spoken to a nurse, social worker or doctor. It's difficult to organise oneself if one cannot get some clear answers about what confronts one. We'll see. Hopefully things will turn out better than they seem at present.
Earlier this week one of the radio-oncology doctors called and told me that my post treatment MRI results revealed the treatment had been moderately successful but the bad news was that I appeared to have a blood clot. A vein ultrascan was organised and thankfully was clear.
It's a great pity I have to go through with all this. Radiotherapy combined with resection does seem to be the standard treatment. In a small number of cases amputation transpires. That had been my main concern.
Anyway it's dinner time for me... I'm running late & this time around hopefully I'll follow up with more posts on the weekend.
cheers
Rob.
I'll have quickly carry out a bit of preparation too. This time I was told I would be in hospital a week and 8 weeks before I can drive. Thus I'll have to organise a few things such as deciding about care for my cat. If I'm only in hospital a week, a neighbour can probably feed him. Knowing the hospital I could be in hospital any amount of time from a few days up to 3 weeks. In my experience of them they never plan anything before hand. The hospital will only plan my after care the day before discharge, community health services etc. Living by myself has caused problems with aftercare in the past, e.g. I should have had community ambulance transport home after my biopsy, they didn't think to ask or plan before hand. I made it home awkwardly & painfully by public transport on that occasion. I've been raising these issues every time I have spoken to a nurse, social worker or doctor. It's difficult to organise oneself if one cannot get some clear answers about what confronts one. We'll see. Hopefully things will turn out better than they seem at present.
Earlier this week one of the radio-oncology doctors called and told me that my post treatment MRI results revealed the treatment had been moderately successful but the bad news was that I appeared to have a blood clot. A vein ultrascan was organised and thankfully was clear.
It's a great pity I have to go through with all this. Radiotherapy combined with resection does seem to be the standard treatment. In a small number of cases amputation transpires. That had been my main concern.
Anyway it's dinner time for me... I'm running late & this time around hopefully I'll follow up with more posts on the weekend.
cheers
Rob.
Thursday 4 October 2007
Grumbles? What grumbles?
I closed my last post by saying 'more on my grumbles on the weekend'. Well a bit more time than the weekend has elapsed and I don't want to get too negative just yet. That can wait LOL.
The radiation burns are greatly improved. The leg does still sting & itch at times and does get heated during the night. The lymphedema is greatly improved though does still build considerably from time to time. I can now walk around without limping. Today I went across to the mainland to do a bit of shopping, the first day of commuting since my last outpatients visit to the hospital. The leg did become a bit stiff & swollen behind the knee.
The hospital gives patients undergoing radiation therapy an aqueous cream to apply to the area being irradiated. During the worst of the post treatment burns I found it to be generally ineffective. Fortunately I found some unused skin creams that belonged to my late mother which I did not throw out after she passed away. Both of them were natural care products. One was based on macadamia nut oil as its primary component and the other on Calendula oil from the marigold plant. The macadamia nut product was really soothing and both of these combined with the aqueous cream really worked well. I've since added vitamin E cream and Tea Tree oil to the mix. I take a couple of applications of each staggered at different times of the day.
Today I was disappointed to receive an outpatients department letter re-scheduling my appointment with orthopedic oncology until 19th October (originally on the 12th of Oct). The whole point of the outpatient's consultation is to plan surgery. The five week's radiotherapy was to make the tumour easier for the surgeon's to remove. I was told that surgery usually has to be carried out 4 weeks after the end of radiotherapy but six weeks is ok. Given that RT finished on 12 Sept, 4 weeks is the 10th of October and 6 weeks is 24 October, an OP consultation on 19 October leaves little room for planning both for myself & the surgeons if the resection has to be carried out in an optimal time frame. I am starting to become concerned about this.
I see my GP on Monday. The letter from the OP department advised my to discuss any concerns I may with my GP and I will do so.
As to whether the radiation therapy reduced the size of the tumour is difficult to say from my perspective. I would say yes it has shrunk a bit. However the very variable fluid swelling on my leg makes it difficult to say exactly how much. It certainly is much softer & has changed shape. It has definitely shrunk on the outside of the thigh. However as it continued to grow on the inside of my thigh between diagnosis & treatment it's difficult to say whether it has shrunk as there is much fluid swelling there and it still burns from time to time. The largest dimension mentioned in any of my medical reports was 15cm on its longest axis.
I'll blog a bit more on my concerns or what I term breakdowns in communication, in coming posts. I've also read a fair bit on liposarcoma and its treaments and I intend to write a bit about that too. I've been intending to post a few links to pages of interest too.
As usual my hobbies & reading greatly help my morale & well being.
cheers
Rob
The radiation burns are greatly improved. The leg does still sting & itch at times and does get heated during the night. The lymphedema is greatly improved though does still build considerably from time to time. I can now walk around without limping. Today I went across to the mainland to do a bit of shopping, the first day of commuting since my last outpatients visit to the hospital. The leg did become a bit stiff & swollen behind the knee.
The hospital gives patients undergoing radiation therapy an aqueous cream to apply to the area being irradiated. During the worst of the post treatment burns I found it to be generally ineffective. Fortunately I found some unused skin creams that belonged to my late mother which I did not throw out after she passed away. Both of them were natural care products. One was based on macadamia nut oil as its primary component and the other on Calendula oil from the marigold plant. The macadamia nut product was really soothing and both of these combined with the aqueous cream really worked well. I've since added vitamin E cream and Tea Tree oil to the mix. I take a couple of applications of each staggered at different times of the day.
Today I was disappointed to receive an outpatients department letter re-scheduling my appointment with orthopedic oncology until 19th October (originally on the 12th of Oct). The whole point of the outpatient's consultation is to plan surgery. The five week's radiotherapy was to make the tumour easier for the surgeon's to remove. I was told that surgery usually has to be carried out 4 weeks after the end of radiotherapy but six weeks is ok. Given that RT finished on 12 Sept, 4 weeks is the 10th of October and 6 weeks is 24 October, an OP consultation on 19 October leaves little room for planning both for myself & the surgeons if the resection has to be carried out in an optimal time frame. I am starting to become concerned about this.
I see my GP on Monday. The letter from the OP department advised my to discuss any concerns I may with my GP and I will do so.
As to whether the radiation therapy reduced the size of the tumour is difficult to say from my perspective. I would say yes it has shrunk a bit. However the very variable fluid swelling on my leg makes it difficult to say exactly how much. It certainly is much softer & has changed shape. It has definitely shrunk on the outside of the thigh. However as it continued to grow on the inside of my thigh between diagnosis & treatment it's difficult to say whether it has shrunk as there is much fluid swelling there and it still burns from time to time. The largest dimension mentioned in any of my medical reports was 15cm on its longest axis.
I'll blog a bit more on my concerns or what I term breakdowns in communication, in coming posts. I've also read a fair bit on liposarcoma and its treaments and I intend to write a bit about that too. I've been intending to post a few links to pages of interest too.
As usual my hobbies & reading greatly help my morale & well being.
cheers
Rob
Subscribe to:
Posts (Atom)
