Talk Cancer

Question:

<< I guess I was lucky too then….I’ve had excellent care from my doctors both times. I’ve always been given the time I needed to ask questions, and also can call their offices anytime I want if I have more. I’ve never been mistreated, or ignored in any way, by any of my doctors. Yes, you have been very fortunate.  That is generally the case for those who have good insurance.  My experiences have been mixed.  Had  I received "appropriate" care from the start, there is a good chance I wouldn’t be posting to this group. My care now is relatively good–not perfect–but ‘adequate.’  I have gotten the ‘appropriate’ tests.  However, I am not so sure that the results have been interpreted appropriately. I recently had a bittersweet victory when my oncologist finally admitted that something may be amiss.  I cannot tell you how many hours of research I put into that to discover–at the expense of my professional life and family (in terms of hours). I am getting the treatment I am getting now ONLY because of all this added effort.  This is not what I want to be doing with whatever time I have left. Why am I doing it?  Because of my recently gained understanding of what cancer "is" and they types of b.c. I have.  I am doing this out of desperation because I know that I won’t have the best options available to me if I don’t. Yes, you are very lucky to be in the situation you find yourself regarding treatment.  Unfortunately, there are many out there who do not have such.  I am lucky to be employed and have adequate health insurance.  There are so many who have lost their jobs and health insurance because of b.c.  In  today’s world it is so easy to create our own safe niche and divorce ourselves from others who do not have the luxuries available re treament that we may have.  It is so easy to dismiss their problems as ‘theirs’ for whatever reasons they may have resulted–be it circumstantial or otherwise. As I mentioned re. treatment I have been lucky–to have gotten a year of Herceptin out-of-protocol.  However, now that I have some understanding of cancer–or b.c.–I am not so sure that it was "out-of-protocol."….

Response:

I guess I was lucky too then….I’ve had excellent care from my doctors both times. I’ve always been given the time I needed to ask questions, and also can call their offices anytime I want if I have more. I’ve never been mistreated, or ignored in any way, by any of my doctors. I fully realize everyone does not have access to the medical care they deserve, but I don’t believe this is the norm in this country. Most hospitals, clinics, and cancer centers are very well run facilities, with staff second to none. That has been my expierence here anyway. "Here" being Northwest Ohio, just outside Toledo. The doctors and staff that have handled my care are very caring individuals, and are dedicated to making these times which we must go through somewhat easier to manage.  They are always very concerned about my well being, and if something is wrong, they do the very best to make it right, so I’m comfortable within the realm of whatever might be going on, {treatments, tests, etc} This takes in everyone from the pharmacist researching something for me, to the oncology nurses, and oncologist himself. I’m truly feel for the ones that haven’t had the medical care that I’ve had here. Take care everyone God bless annie p/s I do truly believe in being honest about our expierences, but not the point of scaring people away from medical care they might need. Ultimately…..we know deeply that the other side of every fear is a freedom. "Courage"…is *fear* that has said it’s prayers.

Response:

I had a mascectomy 2 wks ago tomorrow. It all went well and they removed most of my nodes also. Everything was going fine until on Weds of last week, i started to get a swelling at the top of my scar, towards my arm pit. I have since been to my local doctor, who says what i’d already guessed was the problem, (excess fluid from cut lymphs, not yet dispersed, as my scar not settled down yet.) The doctor has drained this swelling twice for me now, as it is so painful and uncomfortable. The first time he got out 120mls of fluid, the second only 60mls. It has since swollen again and is such a size that i’m worried that it will burst my scar open. Can anyone PLEASE reassure me that this won’t happen and whether they have had this problem also? I don’t see my surgeon until 6th May, so any help apprieciated. Cheers A very worried Shaz x

Response:

Hi Shaz, The drains are supposed to collect this fluid, for the first two weeks. Didn’t your surgeon put in any drains? After two weeks, when the drains are removed, then some fluid may or may not collect, & need to be drained. Please keep going to a doctor, so that this fluid can be drained out, until the swelling stops. Keep asking questions.  Keep trying to get information. You can phone your doctor or surgeon, & if that doesn’t work (which it usually doesn’t), then go sit in their offices & wait.  Expect to wait for many hours.  Eventually, the nurse or asst will ask the doctor your question, & come back to give you the answer. I usually take some busy-work with me, such as grocery coupons to clip & file, books & magazines to read, mail to open, etc.   Since I like & enjoy people’s company, I’m open to listening when they talk, esp. in the doctors’ waiting rooms.   Also, I’ll ask specific questions about their conditions & treatments, what did & didn’t work, which doctors were & weren’t helpful, etc. While waiting, it’s important to stay calm, logical, reasonable, patient, in a good mood, complimentary to others, smiling, to not take offense at anything (no matter what), etc., so that you will get to stay & get some answers.   It’s also important to expect very little from the docs, so you won’t be/feel disappointed. It’s important to keep determinedly going back, & doing the same things over & over, to get answers to your questions, & to get the best medical care possible. Since this can involve so much work, effort, & expense, I try to post what I learn on the internet, in order to help & benefit others. Susan, Su_Texas  my opinions

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Here in Texas, they send us homw w/ drains, which we are supposed to clean and suction, etc. I flat out refused, saying I AM NOT A NURSE.  Eventually, they told me, OK, wel, if you have any trouble, come into the office and we will do it for you…never had a spot of trouble…   I don’t think they do send patients home with drains still in place here in the UK, probably coz it would cost them too much to send round a District Nurse to check it!   I only saw my District Nurse once and that was the day after i was discharged from hospital.   I just wish that i could have been fore warned that this problem could occur. So at least i would have known what to expect. It was VERY scary when it first happened. I didn’t know what was going on or why it had happened (i thought maybe it was something i had done wrong). At least now i know i’m not the only one this has happened to and that in fact it is quite common.   I don’t feel so bad now i’ve heard from others with this problem.   See everyone, this group is excellent for putting peoples minds at rest!   Keep up the good work everyone!!   Take care,   Shaz x   With hindsight it looks like the drain removal was a bit premature in this   case.  I guess they didn’t want to send you home with the drain in, and I   daresay they were under pressure to free up beds.     I don’t know if it is standard UK practice not to send patients home with   drains still in place, I don’t recall having seen one, but that doesn’t mean   much..  It sounds more like an administrative convenience to me.     Tim Jackson       Hi Su,     My surgeon did put a drain in but i had my op on the Mon evening and the   drain was removed on Weds lunchtime. After drain was removed, i was   allowed   to go home.   I live in UK, maybe they do things differently here?     But at least i don’t have to go all the way back to hospital each time it   needs doing. I just pop down the road to my local doctors surgery. So i   shouldn’t grumble too much. i suppose!     I will just have to keep going back each time it gets so swollen, it needs   to be drained again. At least i see my surgeon next Tuesday, i’ll see what   he has to say then.     Shaz x          

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I don’t think they do send patients home with drains still in place here in the UK, probably coz it would cost them too much to send round a District Nurse to check it! I only saw my District Nurse once and that was the day after i was discharged from hospital. I just wish that i could have been fore warned that this problem could occur. So at least i would have known what to expect. It was VERY scary when it first happened. I didn’t know what was going on or why it had happened (i thought maybe it was something i had done wrong). At least now i know i’m not the only one this has happened to and that in fact it is quite common. I don’t feel so bad now i’ve heard from others with this problem. See everyone, this group is excellent for putting peoples minds at rest! Keep up the good work everyone!! Take care, Shaz x – Hide quoted text — Show quoted text – With hindsight it looks like the drain removal was a bit premature in this case.  I guess they didn’t want to send you home with the drain in, and I daresay they were under pressure to free up beds. I don’t know if it is standard UK practice not to send patients home with drains still in place, I don’t recall having seen one, but that doesn’t mean much..  It sounds more like an administrative convenience to me. Tim Jackson Hi Su, My surgeon did put a drain in but i had my op on the Mon evening and the drain was removed on Weds lunchtime. After drain was removed, i was allowed to go home. I live in UK, maybe they do things differently here? But at least i don’t have to go all the way back to hospital each time it needs doing. I just pop down the road to my local doctors surgery. So i shouldn’t grumble too much. i suppose! I will just have to keep going back each time it gets so swollen, it needs to be drained again. At least i see my surgeon next Tuesday, i’ll see what he has to say then. Shaz x

Response:

Hi Katheen, Thanks for telling me about your experience. Least i know now that i’m not the only one this has happened to. I live not far from you, Newmarket. I would have thought that my drain should have stayed in a bit longer. But least i know it is quite common for this to happen and i’m not the only one! Shaz x

– Hide quoted text — Show quoted text – hi Shaz, I live in Peterborough,Cambridge,England.My drains were removed before leaving hosp.after the fifth day.But I had to return  at least twice after this because there was alot  of build-up of fluid to be drained away with a needle.I remember one experience well because a trainee doctor (supervised) was very hesitant while draining away the build-up of blood.He made me very nervous because the experienced doc kept saying ‘ no no not like that’ we were all in a sweat ! Kathleen I had a mascectomy 2 wks ago tomorrow. It all went well and they removed most of my nodes also. Everything was going fine until on Weds of last week, i started to get a swelling at the top of my scar, towards my arm pit. I have since been to my local doctor, who says what i’d already guessed was the problem, (excess fluid from cut lymphs, not yet dispersed, as my scar not settled down yet.) The doctor has drained this swelling twice for me now, as it is so painful and uncomfortable. The first time he got out 120mls of fluid, the second only 60mls. It has since swollen again and is such a size that i’m worried that it will burst my scar open. Can anyone PLEASE reassure me that this won’t happen and whether they have had this problem also? I don’t see my surgeon until 6th May, so any help apprieciated. Cheers A very worried Shaz x

Response:

hi Shaz, I live in Peterborough,Cambridge,England.My drains were removed before leaving hosp.after the fifth day.But I had to return  at least twice after this because there was alot  of build-up of fluid to be drained away with a needle.I remember one experience well because a trainee doctor (supervised) was very hesitant while draining away the build-up of blood.He made me very nervous because the experienced doc kept saying ‘ no no not like that’ we were all in a sweat ! Kathleen

– Hide quoted text — Show quoted text – I had a mascectomy 2 wks ago tomorrow. It all went well and they removed most of my nodes also. Everything was going fine until on Weds of last week, i started to get a swelling at the top of my scar, towards my arm pit. I have since been to my local doctor, who says what i’d already guessed was the problem, (excess fluid from cut lymphs, not yet dispersed, as my scar not settled down yet.) The doctor has drained this swelling twice for me now, as it is so painful and uncomfortable. The first time he got out 120mls of fluid, the second only 60mls. It has since swollen again and is such a size that i’m worried that it will burst my scar open. Can anyone PLEASE reassure me that this won’t happen and whether they have had this problem also? I don’t see my surgeon until 6th May, so any help apprieciated. Cheers A very worried Shaz x

Response:

It’s also important to expect very little from the docs, so you won’t be/feel disappointed.

Not everyone has had bad experiences with physicians as Su describes.  Most doctors are very open and give patients as much time and information as they want.  Perhaps I was just lucky, but I never had any difficulty in getting my general surgeon, OB/GYN, or plastic surgeon to spend time with me answering my questions. I would suggest that if you have lots of questions that you write them down before going to your appointment.  That way you won’t forget some of them and it will make the best use of your time together. …lisa

Response:

With hindsight it looks like the drain removal was a bit premature in this case.  I guess they didn’t want to send you home with the drain in, and I daresay they were under pressure to free up beds. I don’t know if it is standard UK practice not to send patients home with drains still in place, I don’t recall having seen one, but that doesn’t mean much..  It sounds more like an administrative convenience to me. Tim Jackson

– Hide quoted text — Show quoted text – Hi Su, My surgeon did put a drain in but i had my op on the Mon evening and the drain was removed on Weds lunchtime. After drain was removed, i was allowed to go home. I live in UK, maybe they do things differently here? But at least i don’t have to go all the way back to hospital each time it needs doing. I just pop down the road to my local doctors surgery. So i shouldn’t grumble too much. i suppose! I will just have to keep going back each time it gets so swollen, it needs to be drained again. At least i see my surgeon next Tuesday, i’ll see what he has to say then. Shaz x

Response:

I will just have to keep going back each time it gets so swollen, it needs to be drained again.

I had to go back two times to have the fluid aspirated.  The area was swollen and painful until the doctor syphoned off the fluid. It was about a week or so in between visits to have this done.  Eventually it got to a point where any excess fluid was able to be absorbed by my body. Hopefully, this will happen soon for you. Take care. …lisa

Response:

Hi Su, My surgeon did put a drain in but i had my op on the Mon evening and the drain was removed on Weds lunchtime. After drain was removed, i was allowed to go home. I live in UK, maybe they do things differently here? But at least i don’t have to go all the way back to hospital each time it needs doing. I just pop down the road to my local doctors surgery. So i shouldn’t grumble too much. i suppose! I will just have to keep going back each time it gets so swollen, it needs to be drained again. At least i see my surgeon next Tuesday, i’ll see what he has to say then. Shaz x

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