Asking NSW Government to give cancer patients a fair go!

Many people give their time in different ways to improve conditions for the breast cancer community. Here we can discuss what's happening and what needs to happen. We can also celebrate the successes, acknowledge the input and learn how we can help or become involved.
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Re: Asking NSW Government to give cancer patients a fair go!

Postby TanS » Wed Sep 08, 2010 12:39 am

Thanks Admin. Janette I am sorry that you were on the receiving end of someones mood. We absolutely appreciate everything you do for the forum.............and value your friendship just as much.

:hugs:
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Re: Asking NSW Government to give cancer patients a fair go!

Postby Gail » Mon Sep 06, 2010 2:36 pm

Not sure what took place here, but I agree Janette does the most wonderful job offering her time for all of us. Thank you Janette, we love you. :grouphug:
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Re: Asking NSW Government to give cancer patients a fair go!

Postby molly dooker » Sat Sep 04, 2010 9:04 pm

Thankyou. Janette, you are awesome. You do an incredible job. Thankyou to "Admin" for their discretion in this matter. I too didn't see the post(s) but I am sure the decision would have been the right one. Janette always works in the best interests of the forum. Thanks Janette. :hugs: :hugs:
Chris

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Re: Asking NSW Government to give cancer patients a fair go!

Postby schoolteacher » Sat Sep 04, 2010 9:52 am

I know this sort of decision would not be taken lightly. I'm glad I missed the posts! Janette we love you and thank you for all you do to keep this forum running. we would be lost without you :hugs:

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Re: Asking NSW Government to give cancer patients a fair go!

Postby BronNZ » Fri Sep 03, 2010 8:06 pm

Well said - a very hard decision, and meaning no disrespect to Cocococo, but nothing should be aimed at Janette - she does a fantastic job on here, and is always the first to help with very sound and impartial advice.
We are all able to vent on here, but we still have to remember basic manners etc! Sorry this happened, Janette and a big personal thanks from me for what you do for us!
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Re: Asking NSW Government to give cancer patients a fair go!

Postby adminabcg » Fri Sep 03, 2010 4:24 pm

"After a great deal of consideration, we have decided to remove Cocococo as a member of the Forum, as we feel she is in breach of the rules for participation. We have also removed her recent posts which we feel represent an unfair and offensive attack on Janette. It is important to realise that Janette moderates and runs the forum in a voluntary capacity, giving a great deal of care and thought to protecting members. We understand there are many things which may upset and anger members about their cancer or treatment but this is not an excuse to abuse the forum moderator when she acts in the best interests of all members by applying the rules of membership. The committee are dedicated to preserving the forum in a way that would please its creators and therefore we take our roles very seriously. We want the forum to be a safe place for all members and this is why we have made this very difficult decision which we hope you will understand."

"We have also suggested to Cocococo that she follow up her concerns with BCNA who advocate for BC."

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Re: Asking NSW Government to give cancer patients a fair go!

Postby schoolteacher » Sun Aug 29, 2010 7:29 pm

I had a sentinel node biopsy here in Victoria and it was the most painful part of the initial surgery. I would not want to experience it again! I hope things improve for women.

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Re: Asking NSW Government to give cancer patients a fair go!

Postby Marydean » Tue Jul 27, 2010 1:39 pm

Coco, I understand that you have experienced a very painful procedure and probably unnecessarily so. I'm sorry to hear you have ongoing problems associated with what must have been an excruciating pain experience for you :hug:.

Thanks to the info exchange on this very forum I alerted my surgeon to my wish to have local anaesthesia injected along with the radio tracer dye, as per a recent study indicating it didn't affect the accuracy of the procedure. We had a short discussion around the likelihood of pain, which my surgeon indicated was problematic for injections specifically around and under the nipple (which I wouldn't need), as opposed to elsewhere in the breast. But he was happy to support my request for pain relief. In any case, I didn't get to test the outcome because my nodes were found using dye during the operation instead of pre-surgically (which was appropriate given my very low risk of invasion).

I agree that there is definitely a need for clinical practice guidelines to be updated to include pain-reduction guidelines around lymphoscintigraphy. I know the radiologist who did my core biopsy (which was a very difficult one for them, for a number of reasons) did what she could to minimise the pain I experienced during that procedure, and was apologetic because the need to get the best sample overrided the need for them to "back off" (there is only so much a local anaesthetic can do). So the people in the room that day definitely demonstrated compassionate awareness of the pain levels I was experiencing. At the same hospital sedation is routinely given for bone marrow biopsies (where a piece of your hip bone is drilled out using a thing which resembles a large wine bottle corkscrew), which is best practice but *not* routinely in done in other hospitals, so the variability in pain-management guidelines extends to other areas of medical practice. It shouldn't be so, we have the technologies to reduce the amount of pain people experience during invasive procedures, they should be routinely implemented, and not dependent on patient self-education or self-advocacy.

While litigation isn't my cup of tea, I do recognise that it has been a powerful agent for change, and I wish you all the best in your endeavours. However I tend to agree with Jayem, there are a number of bodies in Australia that act to lobby and bring attention to certain issues, and already have a position of respect and the "ear" of the state and national health structures. Bringing this issue to those bodies along the established channels may further the cause more than you realise, esp given that routine administration of anaesthetic in the radiotracer needle would have a minimal funding impact (ie no one can argue it's not doable without more $$).
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Re: Asking NSW Government to give cancer patients a fair go!

Postby Janette » Tue Jul 27, 2010 12:19 am

Pain relief for that procedure would certainly help give bc patients a fairer go, if there is no medical reason not to have pain relief. Mine was worse than the mastectomies. I know of one lady who had the injections and lymphoscintigraphy and the operating theatre and surgeon ran out of time and her mastectomy was postponed. She then had to undergo the whole thing again a few days later.

I seriously don't think I could have fronted a second time. I would doubt that including the fact that the injections are sheer agony in the brochure would be helpful.
Janette


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Postby jayem » Mon Jul 26, 2010 11:28 pm

With all due respect Cocococo, litigation is not always the most appropriate way to achieve effective change.

Patient advocacy and active lobbying has been responsible for many improvements in medical treatments, particularly with the approval of targeted therapies for breast cancer.

I have a great deal of respect for the NSW Cancer Council and feel that a well-considered approach to them with specific concerns is likely to achieve far more than a generalised attack.

You may not have found the guide for early breast cancer helpful, but it does provide information for women who are thrust into the breast cancer world. Of course the information is not exhaustive... indeed it is not designed to be. Many people do not want any more information than that provided in the guide. For those who crave more information, then the guide is merely the basis from which you can start further research.

If you are serious in your campaign for adequate pain relief for procedures, first ascertain what the guidelines are here in Australia and then get an accurate, official picture of best practice in other countries. With that information available you will be able to determine exactly what can and should be done to ensure all procedures are as pain free as possible.

It may be worth your while contacting NBOC as well as they have members on various boards... I think that arm of the group is called "a seat at the table". Someone will correct me if I am wrong.

Your passion is to be applauded but it is careful planning in formulating strategies that is likely to achieve the best outcomes.
Jan

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Postby Janette » Sat Jul 24, 2010 6:50 pm

I found my lymphoscintigraphy injections very painful too. However I am under the impression that medication to ease the discomfort may interfere with the accuracy of the test. I don't know if my impression is correct or not though.

I have a lot to be thankful to the Cancer Council of NSW for despite any possible inaccuracy of the brochure. I have spoken to others who did not suffer as badly as I did from those injections.
Janette




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Asking NSW Government to give cancer patients a fair go!

Postby cancercouncilnsw » Tue Jul 20, 2010 11:10 am

Hi all,

I work for the Cancer Council NSW and we are currently asking NSW State politicians to give NSW Cancer patients a fair go and do more in cancer prevention. As you may have seen first hand, cancer patients can face unnecessary burdens when they need treatment.

For example I recently worked with a breast cancer patient, Kate who had to travel hours by public transport to get radiotherapy. I've also spoken to another lady who chose a mastectomy as she couldn't get to treatment. That's just not right.

We need your help to call for better treatment for cancer patients.

Anyone in NSW interested in helping us get these issues in front of State Government go to http://www.savinglife.com.au and watch our video on http://www.youtube.com/watch?v=Ek_l93WMiPg. There are so many ways to get involved, from sharing your story to lobbying your local pollie.

cheers,
Karen
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