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Stage 4 rectal cancer on my liver and left lung

8 Sep 2017 20:08

I have recently had polyps, lower colon and rectum removed. I am adjusting  to that

BUT

the oncologist tells me it is my liver,left and right lobes, and also in my left lung.

i am receiving a course of XALIPLATIN every 21 days and take CAPECITABINE daily for 14 days each cycle.

i have been given only  months to live !

The oncologist raised the possibility of surgery on the liver, but scoffed when I suggested my left lung be removed also.

reading articles on this site, removing and living effectively with only one lung is feasible.

should I seek another opinion???

 

 

 

Stage 4 rectal cancer on my liver and left lung

9 Sep 2017 11:42 in response to MPS_ColonCancer
I'm so sorry for the diagnosis . Not the same but my dad was diagnosed with stage 4 lung cancer and because it had spread to the lymph nodes they would not remove his lung because they said it is pretty much pointless as would not help because it had already spread and it can just make things worse! I hope you get the best treatment possible Hun and I just said a prayer for you. All the very best x

Stage 4 rectal cancer on my liver and left lung

11 Sep 2017 15:48 in response to MPS_ColonCancer

Hello,

Thanks for posting a question. I am very sorry to learn about your situation.

You could ask for a second opinion, but it might be better to get your situation assessed at a later date. For example I don’t know how many courses of chemotherapy you have had or if  a specific number of courses are planned. I mention this because sometimes doctors like to give chemotherapy first to shrink a cancer. Then they reassess to see if it is operable. So your medical team may not be sure at the moment about what can be done

Having said this, I do not want to raise your hopes unfairly about the possibility of surgery on your lung. While it is fair to say that  I have come across people with bowel cancer who have had surgery to remove  bowel cancer spread to the liver and also to the lung, this is more commonly done in different circumstances, By this I mean when the cancer comes back perhaps in the liver first and then later in the lungs.  You may wonder why this makes a difference. But I think that the problem in situations like yours is that even when the cancer is operable, extensive surgery does not always help.

Sorry to say this in an email, but even if  a surgeons able to remove all of the visible cancer, with a relatively wide spread disease, there is a higher chance that cancer cells will have escaped and be elsewhere. They may be too small to be seen. But they could start to grow again and cause problems. So it may not be in in someone’s best interest to have very major surgery, with a long recovery time only to find that the cancer is growing again. So in some cases chemotherapy is the better option as it is a whole body treatment.

At the very least you  deserve to have a full explanation as to why  lung surgery has been ruled out in your case. So if you have a specialist nurse at the hospital you could ask them if they can explain things more fully to you or you could ask to see the specialist again to go through things. If after this you still want to have a second opinion then I am sure that your specialist will understand why and help you with this. You do not have the automatic right to get a second opinion on the NHS, but it is not often refused. To do this you would need a referral from your specialist or GP to another doctor. We have some general information about getting a second opinion. here.

Do get back to us if you have any other questions. If you would like to telephone our Freephone number is 0808 8004040.We are here from Monday to Friday between the hours of 9am to 5pm.

Kind regards,

Jean

Stage 4 rectal cancer on my liver and left lung

11 Sep 2017 16:05 in response to CRUK Nurse Jean

Thanks Jean

Stage 4 rectal cancer on my liver and left lung

14 May 2019 09:31 in response to CRUK Nurse Jean

Hi Jean,

an update on my situation.

i did a six month course of chemo, which made me feel ill and exhausted for a full year.

i am overthat now and have no desire to do chemo again.

i ended up paying for a private clinic to have the lesions on my lung surgically removed.

i am now recovered from that but clearly short of breath when climbing stairs etc.

i was told to have  CT Scans every  three months to monitor the situation.

however because I am homeless with no fixed abode { in a YHA this week)

i have no access to a GP who can refer me to a hospital for a scan..

also I pay for my colostomy bags as I have no prescription.

the excuses given by various medical practices as to why I can’t register are endless.

this is the reason my cancer reached stage four in the first place, a total lack of access to a GP

 

 

Stage 4 rectal cancer on my liver and left lung

15 May 2019 15:33 in response to MPS_ColonCancer

Hello again and thanks for the update about your situation, it sounds like you have had a horrible time. 

I know it can be difficult to register with a GP, but according to the NHS website, GP practices aren't meant to refuse to accept a patient because they are homeless. You can read more about this on the NHS website here where there is a leaflet for homeless people which you can download.  This says that you cannot be refused GP registration because you are homeless or do not have proof of address.  It might not be easy, but do keep on trying to get yourself registered, I appreciate this can be a wearisome process and harder work than it should be.  I wondered if it is worth asking the YHA if they can put you in touch with a support worker who could help? 

You probably already know, but in case you don't, I just wanted to say that because you have had cancer treatment your prescriptions, when you can get them, should be free, but you need an exemption certificate which a doctor has to sign. Read more about this here

Please do give us a call if you want to talk anything over. The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Take care, 

Julia