Aa
Please help me, I am desperate
How can all this be possible?
May 2009: I was diagnosed with cervical cancer though I do not meet the criteria for such a diagnosis, ... [More] but had it all the same. I received chemotherapy and radiotherapy in 30 simultaneous sessions. Then in 15 days I had 2 brachytherapies one after the other .
October 19th. 2009: I went to my oncologist for a post therapy follow up, he said there was no cancer any more. I know I have to keep in mind my follow ups for 5 years. Never the less.......
The oncologist practiced a clinical breast exam nothing was found to be wrong. He ordered a mammogram and an image test, the image tests were clean but the mammogram showed multiple microcalsifications in one of my breasts. The radiologist said a biopsy was necessary so he then referred me to a breast surgeon. Tomorrow Thursday I am having a surgical removal for a biopsy.
I am very anxious and scared to death about this procedure as the surgeon told me there are 3 alternatives:
1] 1/3 of the breast would be surgically removed for the biopsy, if nothing bad showed up in the results then end of subject. 2] 1/3+ a few inches of the breast would be surgically removed, for the biopsy, again if nothing bad showed up end of subject. 3] If there was an invasive issue, he would remove the same as in item 2 + the Sentinel Lymph Node, then wait for the results and possibly require surgery to withdraw the whole breast + chemo and radiotherapy.
No. 3 means I may have a second cancer issue. I wonder is it worth the pain and suffering?
There is NO cancer history in any of the two sides of my family. Cancer has never been an issue and has not ever been in the picture every one died of old age or heart problems. I never had any issues with my breasts, never a discharge, pain or any other.
I have never been: overweight or consumed alcohol not even a glass of wine. I have always: exercised, eaten healthy I'm a vegetarian, breast feed my two sons for a year each so I don't understand a thing.
Please help me understand, will I be condemned to this for whatever time I have left in my life? I can still back out of tomorrow's procedure what should I do?
Thanks a lot and regards.
May 2009: I was diagnosed with cervical cancer though I do not meet the criteria for such a diagnosis, ... [More] but had it all the same. I received chemotherapy and radiotherapy in 30 simultaneous sessions. Then in 15 days I had 2 brachytherapies one after the other .
October 19th. 2009: I went to my oncologist for a post therapy follow up, he said there was no cancer any more. I know I have to keep in mind my follow ups for 5 years. Never the less.......
The oncologist practiced a clinical breast exam nothing was found to be wrong. He ordered a mammogram and an image test, the image tests were clean but the mammogram showed multiple microcalsifications in one of my breasts. The radiologist said a biopsy was necessary so he then referred me to a breast surgeon. Tomorrow Thursday I am having a surgical removal for a biopsy.
I am very anxious and scared to death about this procedure as the surgeon told me there are 3 alternatives:
1] 1/3 of the breast would be surgically removed for the biopsy, if nothing bad showed up in the results then end of subject. 2] 1/3+ a few inches of the breast would be surgically removed, for the biopsy, again if nothing bad showed up end of subject. 3] If there was an invasive issue, he would remove the same as in item 2 + the Sentinel Lymph Node, then wait for the results and possibly require surgery to withdraw the whole breast + chemo and radiotherapy.
No. 3 means I may have a second cancer issue. I wonder is it worth the pain and suffering?
There is NO cancer history in any of the two sides of my family. Cancer has never been an issue and has not ever been in the picture every one died of old age or heart problems. I never had any issues with my breasts, never a discharge, pain or any other.
I have never been: overweight or consumed alcohol not even a glass of wine. I have always: exercised, eaten healthy I'm a vegetarian, breast feed my two sons for a year each so I don't understand a thing.
Please help me understand, will I be condemned to this for whatever time I have left in my life? I can still back out of tomorrow's procedure what should I do?
Thanks a lot and regards.
WOW and OUCH.....for your description about your knee and trigger finger issues, you have truly been through a lot of pain and suffering. I am sure glad you are not taking Tamoxifen and will anxiously wait for the name of the drug you are now taking PLEASE DON'T FORGET TO POST IT!
I too believe that your recurrence would have been the same with or without Tamoxifen though I would have been so happy if you did not have it, you are too young. I don't trust these meds nor the BIG MONEY labs. Believe it or not i don't even trust the idea & hope that cancer can be cured it is a huge business and I am dead sure it is related to environmental contamination. I think they just drag us through time with these horrible meds and sometime between 5 to 10 years we are gone.
I am a firm believer that we should look forward to quality and not quantity of life. I am absolutely sure that with the mastectomy I just had, plus chemo and radiotherapy I can live well around 5 more years without pain or unnecessary sufferings this is why I want to have a long talk with my chemotherapist. I have not told anyone about this, but I am fixing my papers, my will and the rest that are necessary for my boys to inherit whatever I have in due time. I will continue to eat healthy, take my calcium and vitamin D + E supplements, exercise all I can, continue my Yoga meditation and Tai-chi exercises. Like I have always said: I was born in God's hands, lived a good life in His hands and it will be so till he decides it is time for me to go.
I will post back tomorrow with some curious information I have found about the Hormone Therapy meds & Aromatase Inhibitors, do you know who takes them? Bodybuilders!! Interesting right?
Have a good night and God bless you.
I too believe that your recurrence would have been the same with or without Tamoxifen though I would have been so happy if you did not have it, you are too young. I don't trust these meds nor the BIG MONEY labs. Believe it or not i don't even trust the idea & hope that cancer can be cured it is a huge business and I am dead sure it is related to environmental contamination. I think they just drag us through time with these horrible meds and sometime between 5 to 10 years we are gone.
I am a firm believer that we should look forward to quality and not quantity of life. I am absolutely sure that with the mastectomy I just had, plus chemo and radiotherapy I can live well around 5 more years without pain or unnecessary sufferings this is why I want to have a long talk with my chemotherapist. I have not told anyone about this, but I am fixing my papers, my will and the rest that are necessary for my boys to inherit whatever I have in due time. I will continue to eat healthy, take my calcium and vitamin D + E supplements, exercise all I can, continue my Yoga meditation and Tai-chi exercises. Like I have always said: I was born in God's hands, lived a good life in His hands and it will be so till he decides it is time for me to go.
I will post back tomorrow with some curious information I have found about the Hormone Therapy meds & Aromatase Inhibitors, do you know who takes them? Bodybuilders!! Interesting right?
Have a good night and God bless you.
PS: Oh, and I am no longer on the Tamoxifen...and, my cancer came back after I got off those hormone pills. (although I cannot be sure it would not have with the drugs) butterfly222 was concerned all the time I was off it, too.
Now I am on a drug and I am too lazy to look it up this minutel it's also an estrogen antagonist and given in a shot IM once a month.
I may post it later! Kat
Now I am on a drug and I am too lazy to look it up this minutel it's also an estrogen antagonist and given in a shot IM once a month.
I may post it later! Kat
The most common side effects from Tamoxifen are weight gain, hot flashes, nausea, joint problems and also Depression. Many women are helped by anti-depressants, also for the hot flashes and which can be severe as was for me but did get better over time. Not all ant-depressants can be used as some interfere with the action of the Tamoxifen. (I myself did not suffer from Depression except for that first week which I describes as feeling 'catatonic')
I am sure it was not as severe as in what you posted but I just wanted for you to get the sense. Depression, just sitting and staring, not feeling anything, unable to function.
The aromatase inhibitors are more known to cause bone and joint problems, anywhere from mild to severe, but not everyone has problems although they are very common and generally worse with the latter than with Tamoxifen. (Tamoxifen is also much cheaper)
After being on Tamoxifen for about six weeks, one day my right leg collapsed without injury and it was the most severe pain I ever had in my life and it lasted for weeks during which I was unable to walk and if, only limp with horrible pain. Just touching the knee was like another injury.
I was of course sure these were bone mets. (but my oncologist did not think so because the pain I was describing was too severe)
My doctor (PCP) then did an x-ray finally, and a test to see if there were blood clots in my leg, as blood clots can happen with this drug.
This was both times followed by a note with a smiley face about how lucky I should feel that it's nothing. (except, every moment was so severe...it was ridiculous to tell me it was 'nothing')
Finally , after begging, a bone scan was ordered, and I told the technician that the very worse that could happen would be that nothing showed up on the scan. luckily it did; a huge light bulb type thing around the knee and from there I got an MRI.
It turned out that my femur (major bone from hip to knee) towards the knee was dying and the bone marrow all swollen and pieces of bone chipping off and falling into the knee cavity. (Osteonecrosis)
Which reminds me, make sure your Vit. D. levels is checked and good and otherwise you need a supplement. I think that made the biggest difference. My thing went away as suddenly as it came on but I had to be on heavy pain meds for a while.
Then I got something called trigger finger and which happens a lot with us I think on both types of medicines. Your fingers, or one) get bent and stuck in a bent position and you cannot release them. it's really scary and hurts like hell to have someone release them with force. So I had to have surgery to widen the cavity through which the tendon goes in the hand.
PS: The orthopedist said I may have to have a knee replacement if it doesn't go away with conservative treatment like casting, etc, but it did. On my last bone scan everything was gone.
I am sure it was not as severe as in what you posted but I just wanted for you to get the sense. Depression, just sitting and staring, not feeling anything, unable to function.
The aromatase inhibitors are more known to cause bone and joint problems, anywhere from mild to severe, but not everyone has problems although they are very common and generally worse with the latter than with Tamoxifen. (Tamoxifen is also much cheaper)
After being on Tamoxifen for about six weeks, one day my right leg collapsed without injury and it was the most severe pain I ever had in my life and it lasted for weeks during which I was unable to walk and if, only limp with horrible pain. Just touching the knee was like another injury.
I was of course sure these were bone mets. (but my oncologist did not think so because the pain I was describing was too severe)
My doctor (PCP) then did an x-ray finally, and a test to see if there were blood clots in my leg, as blood clots can happen with this drug.
This was both times followed by a note with a smiley face about how lucky I should feel that it's nothing. (except, every moment was so severe...it was ridiculous to tell me it was 'nothing')
Finally , after begging, a bone scan was ordered, and I told the technician that the very worse that could happen would be that nothing showed up on the scan. luckily it did; a huge light bulb type thing around the knee and from there I got an MRI.
It turned out that my femur (major bone from hip to knee) towards the knee was dying and the bone marrow all swollen and pieces of bone chipping off and falling into the knee cavity. (Osteonecrosis)
Which reminds me, make sure your Vit. D. levels is checked and good and otherwise you need a supplement. I think that made the biggest difference. My thing went away as suddenly as it came on but I had to be on heavy pain meds for a while.
Then I got something called trigger finger and which happens a lot with us I think on both types of medicines. Your fingers, or one) get bent and stuck in a bent position and you cannot release them. it's really scary and hurts like hell to have someone release them with force. So I had to have surgery to widen the cavity through which the tendon goes in the hand.
PS: The orthopedist said I may have to have a knee replacement if it doesn't go away with conservative treatment like casting, etc, but it did. On my last bone scan everything was gone.
Hi Kat:
By Catatonia do you mean this: Catatonia is a condition characterized by psycho motor disturbance, an interruption of normal movement. Catatonic features can occur with major depression may also be an extreme side effect of a medication.
Possible Presentations:
* Stupor - lack of response to external stimuli, e.g., no response to being spoken to or prodded
* Catalepsy - muscular rigidity, so that the limbs remain in whatever position they are placed.
* Excessive motor activity with no purpose
* Extreme negativism - resistance to movement or instruction
* Mutism - being unable or unwilling to speak
* Inappropriate postures and grimacing [What is this?]
* Echolalia - parrot-like repetition of a word or phrase just spoken by another person
* Echopraxia - repetitive imitation of the movements of another person
Complications caused by this condition:
* Malnutrition
* Exhaustion
* Self-inflicted injury
This info is really horrible, did you live alone? did you have someone to take care of you? were you in hospital? I don't understand why you needed surgery relating to your joints, bobes and connective tissue, why surgery?
Regarding all the other Aromatase inhibitors and your description on what you felt, goodness God it must have been horrible and it is very scary. If you had to take the Tamoxifen again would you take it?
I don't get it, if these meds are supposed to help cure people why the hell are we supposed to go through so much pain and discomfort to avoid a metastasis? " I hate LABS" !
Please reply my questions, I will keep checking for your reply.
Regards.
By Catatonia do you mean this: Catatonia is a condition characterized by psycho motor disturbance, an interruption of normal movement. Catatonic features can occur with major depression may also be an extreme side effect of a medication.
Possible Presentations:
* Stupor - lack of response to external stimuli, e.g., no response to being spoken to or prodded
* Catalepsy - muscular rigidity, so that the limbs remain in whatever position they are placed.
* Excessive motor activity with no purpose
* Extreme negativism - resistance to movement or instruction
* Mutism - being unable or unwilling to speak
* Inappropriate postures and grimacing [What is this?]
* Echolalia - parrot-like repetition of a word or phrase just spoken by another person
* Echopraxia - repetitive imitation of the movements of another person
Complications caused by this condition:
* Malnutrition
* Exhaustion
* Self-inflicted injury
This info is really horrible, did you live alone? did you have someone to take care of you? were you in hospital? I don't understand why you needed surgery relating to your joints, bobes and connective tissue, why surgery?
Regarding all the other Aromatase inhibitors and your description on what you felt, goodness God it must have been horrible and it is very scary. If you had to take the Tamoxifen again would you take it?
I don't get it, if these meds are supposed to help cure people why the hell are we supposed to go through so much pain and discomfort to avoid a metastasis? " I hate LABS" !
Please reply my questions, I will keep checking for your reply.
Regards.
Chemotherapy and hormonal therapy are two categories of 'Systemic therapy', meaning, they treat the whole body/system.
on the other hand, both surgery and radiation are considered to be 'local therapy', as they are not systemic but local treatment. (limited to one place..i.e. the breast)
Some women respond better, and get more help from hormonal treatment than from chemotherapy.
(and it is is therefore a good thing to be ES/PR positive because you have a whole new and different systemic treatment available to treat which you do not have when you are not positive for hormones)
You cannot go by all the book information you posted because it ultimately comes down to your own experience only. (So if you tell you doctor your leg is hurting like hell from tamoxifen, (example) he is likely to deny that tamoxifen causes this, when all we women who have had this symptom know very well that it was the tamoxifen.
I had some initial side effects from the tamoxifen, mostly catatonia, that went away after a week. Then I had some horribly serious other stuff relating to my joints, bobes and connective tissue that reqiured surgery. after that I was able to tolerate the drug and it got better.
With Arimidex and all the other Aromatase inhibitos I tried it was more like this. (both metaphorically and literally)After about two hours of taking the medicine, I was placed in a small cage and transferred to hell. (I could not take any of them, they ate my soul)..when Tamoxifen only broke my body.
KAT
on the other hand, both surgery and radiation are considered to be 'local therapy', as they are not systemic but local treatment. (limited to one place..i.e. the breast)
Some women respond better, and get more help from hormonal treatment than from chemotherapy.
(and it is is therefore a good thing to be ES/PR positive because you have a whole new and different systemic treatment available to treat which you do not have when you are not positive for hormones)
You cannot go by all the book information you posted because it ultimately comes down to your own experience only. (So if you tell you doctor your leg is hurting like hell from tamoxifen, (example) he is likely to deny that tamoxifen causes this, when all we women who have had this symptom know very well that it was the tamoxifen.
I had some initial side effects from the tamoxifen, mostly catatonia, that went away after a week. Then I had some horribly serious other stuff relating to my joints, bobes and connective tissue that reqiured surgery. after that I was able to tolerate the drug and it got better.
With Arimidex and all the other Aromatase inhibitos I tried it was more like this. (both metaphorically and literally)After about two hours of taking the medicine, I was placed in a small cage and transferred to hell. (I could not take any of them, they ate my soul)..when Tamoxifen only broke my body.
KAT
"Chemotherapy" in the broadest sense is just the use of chemicals as therapy.
It has become most closely associated in the lay person's mind with chemotherapies for cancer (which, by the way, include IV meds, injections, and pills), but is also used in regard to chemical (medication) treatment of other disorders.
The POSSIBLE side effects for the medications you have been studying can be alarming, but please remember that not everyone gets all, or even very many, of them. (For example, as zouzi mentioned in her post, her side effects from Arimidex have been minor and manageable.) The possible side effects of the intense chemotherapy protocols that many of the members of this community are going through, or have been through, are also alarming, but when you weigh the potential "cost" (side effects) againt the potential "benefit" (survival), for most people the decision is a "no-brainer."
Another thing to keep in mind is that if most people read the complete PDR entries, FDA-required disclosures by the drug manufacturers, and "prescribing information" on common products like aspirin or ibupropen, few would want to take them, either!
I'm sure your chemotherapist/oncologist will be able to answer all your questions, and perhaps to some extent, allay your fears. I would not presume to make any recommendations, when you already have a treatment team that knows all the specifics of your med. hx and current health status.
Best wishes...
It has become most closely associated in the lay person's mind with chemotherapies for cancer (which, by the way, include IV meds, injections, and pills), but is also used in regard to chemical (medication) treatment of other disorders.
The POSSIBLE side effects for the medications you have been studying can be alarming, but please remember that not everyone gets all, or even very many, of them. (For example, as zouzi mentioned in her post, her side effects from Arimidex have been minor and manageable.) The possible side effects of the intense chemotherapy protocols that many of the members of this community are going through, or have been through, are also alarming, but when you weigh the potential "cost" (side effects) againt the potential "benefit" (survival), for most people the decision is a "no-brainer."
Another thing to keep in mind is that if most people read the complete PDR entries, FDA-required disclosures by the drug manufacturers, and "prescribing information" on common products like aspirin or ibupropen, few would want to take them, either!
I'm sure your chemotherapist/oncologist will be able to answer all your questions, and perhaps to some extent, allay your fears. I would not presume to make any recommendations, when you already have a treatment team that knows all the specifics of your med. hx and current health status.
Best wishes...
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