Virus and being at risk: I find it hard... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Virus and being at risk

JackieP profile image
10 Replies

I find it hard to believe that living with only the right lung I only moderately at risk.

Are there others that feel the same.

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JackieP profile image
JackieP
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10 Replies
jillygirl profile image
jillygirl

Hi Jackie, I have only got my left lung . I have been classed as severely vunerable, perhaps its because I also have copd and a past heart attack and I am 71.

I would still have thought you would be classed as an extremely vunerable.

JackieP profile image
JackieP in reply to jillygirl

I had right lung removed in July 2013 age 62. You certainly have more problems regarding your health .Take care.

RoyCastleHelpline profile image
RoyCastleHelplinePartnerAsk the NurseRoy Castle

Dear JackieP

Its not an easy time for those affected by lung cancer.

We are very aware that the current pandemic is presenting a number of questions and concerns. If you have not been identified as vulnrable, there are still steps you can take to help protect yourself. If you have local support either from family,friends of neighbours you could isolate yourself with their support. We are aware that some have taken the decision to self isolate themselves. Jillygirl has mentioned the possibility of other health problems combined with the previous lung surgery categorising her as vulnerable. We would be happy to talk to you in more detail on the helpline if it helps. Emotional wellbeing is as important as physical wellbeing, and if you feel isolating would help with your emotional wellbeing it is worth considering.

There is additional information for those with cancer, provided by a group of charities that have come together called 'One Cancer Voice' during this pandemic:

roycastle.org/covid-19/info...

If you wish to discuss anything you can either email us at lungcancerhelp@roycastle.org or call our freephone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

Sisters1 profile image
Sisters1

Hi Jackie. My sister had a lobectomy in October 2018 and has been coughing up blood since before Christmas with shortness of breath however has been told by her go that she's not vulnerable enough to be on the shielding list becausw she's not getting chemo. A consultant ent doctor however told her she is at high risk and should be shielded. I'm not sure that the right hand knows what the left hands doing to be honest. Worrying times when the professionals can't agree but I suppose we also have to bear in mind that the guidance is changing all the time. In meantime my sisters blood loss continues while she waits for a gastronomy apt. Her consultant said if she doesn't hear in a month he will chase it up !!.

JackieP profile image
JackieP in reply to Sisters1

Hi Di d your sister not have a lung nurse who could look into bringing the appointment forward,. I’m sorry you sister has to wait .

Sisters1 profile image
Sisters1 in reply to JackieP

Yes she was going to get back to me some time ago but hasn't managed to do so yet so I've emailed her again today. Her gastronomy apts also been cancelled apparently until further notice due to covid19 but she's still bringing up blood. Thanks for your support everyone.

JanetteR57 profile image
JanetteR57 in reply to Sisters1

if your sister's consultant and GP both agree she should be on the list, they both have the 'power' and opportunity to add her to the list. Please ask them why they haven't done so....

JanetteR57 profile image
JanetteR57

There has been very confusing information about lung cancer patients and initially the only treatments mentioned were radical radiotherapy and chemotherapy currently. many patients have palliative radiotherapy and there was no mention at all about surgically resected patients or patients who had their treatment some time ago. when the later advice came out about the extremely vulnerable to be shielded, the same confusion arose around asthma and COPD as only 'severe' versions of both conditions were included and most patients do not know if they have 'moderate, chronic or severe' COPD or asthma. The latest national algorithm used has been very specific about all these conditions and listed the combination of treatments and number of courses of steroids prescribed within a given period in conjunction with nebulised, inhaled or oral steroids. I have posted a couple of links into online patient forums from ERS advice that states that resected patients are not deemed to be at any more risk than the general population (which logically seems to make little sense) especially in the case differences between somebody who had a wedge resection and a whole lung removed as in your case. The reason some have had letters and others not is also related to other conditions they may have. if you believe you should be on the list of those for whom lockdown will last much longer than anyone else, you can contact either your consultant or GP who are currently going through the various record comparison (collating hospital records with primary care records and those GPs have 'flagged' as vulnerable and adding those where individuals have themselves identified themselves as extremely vulnerable. this was due to have been completed on Easter Monday but as GP practices were only sent the information on Good Friday, they're still working on this information. In the meantime you may find this of interest...

europeanlung.org/en/QA-covi...

BellaBe profile image
BellaBe

Just to mention it wasn’t only patients receiving chemotherapy and radiotherapy it was also patients receiving targeted therapy as this also affects the immune system.

I think the point is how efficient your immune system is. Your immune system can be working at full capacity with one lung or two.

JanetteR57 profile image
JanetteR57 in reply to BellaBe

Thanks - sorry I just mentioned 'traditional treatments' as the shielding advice specifically mentions lung cancer patients receiving radical radiotherapy. all patients as far as I understand on targeted treatments and immunotherapy are in the 'extremely vulnerable' group to be shielding... apologies for any confusion. as ever, if people are unclear, they should look at the official advice on gov.uk which is regularly updated and available in different community languages.

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