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bubble
Posts: 8
Joined: Mon Jun 13, 2016 11:35 pm

Do cancer cells spread faster after an abdominal opening?

Postby bubble » Fri Jan 27, 2017 9:47 pm

Hello, I've already wrote twice here. I'm very sad to write that my beloved mother has passed away in early January, 14 months after initial diagnosis. Our story is that malignancy wasn't proven until she was too weak for chemotherapy. Moreover, after three needle biopsies and after an EUS biopsy in January 2016 they defined it as it was most likely a benign tumor, though it didn't seem to be a certain diagnosis. She was told to come back 3 months later. At the first CT scan the tumor was 2 cm, but she wasn't able for Whipple as the tumor was on a blood vessel. The scan revealed a spot in the liver, which wasn't sure if malignant or not (well, looking back probably it was, but even then it was very small then). She didn't get any therapy, only palliative surgeries later. For 6 months after diagnosis she was really well, no pain or weight loss. Biliary problems caused by the tumor started in April last year, and after that scans showed the possible metastases in the liver.
My main question is that do the cancer cells start spread faster after the abdomen is opened for a biopsy? I heard that it happens because of getting oxygen to the cells. I'm asking this, because I believe that one year ago she should have been sent to a surgical opening to take a specimen directly from the tumor, and that would have given a reliable result at last. Later it turned out that the outer cells in the tumor were benign, and the EUS biopsy picked up only from those. I do have a strong twinge of conscience that either we should have begged for this final surgical biopsy, or we should have gotten to another oncologist centre.
I know that she couldn't have been cured, but if she could have started chemotherapy at the beginning, she probably could have lived much longer. I'm pretty sure that when she was still strong, her body would have reacted to the chemo well, as she has always been a very strong person who endured pain well. Even until her last days she didn't need major painkillers. So I believe chemo would have helped her to slow down the tumor growth, if had started in time. Even some extra months would have been wonderful for her and the family.
I'd also like to ask, what is the process in that case like ours, when doctors define cancer after the CT scan, but the biopsy can't prove malignancy? I don't think they just send the patients home like this, to come back later. Especially that even a benign tumor has to be treated as it can become malignant with time. What do they do? Is the opening really dangerous, or even it is, can it be done if they can't prove malignancy any other way?
Please feel free to write your opinions, because even though I have read some things and pages about pancreatic cancer, I don't know enough to tell what should have been done in our case.

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Do cancer cells spread faster after an abdominal opening

Postby Wife&Mum » Sat Jan 28, 2017 10:14 pm

Dear Bubble

I am so sorry to read that you lost your beloved mother this month and I send you and your family my sincere condolences.

You raise many questions in your post and hopefully others will chip in as I haven't really got any answers.

But I would imagine that it's very rare for as many as 4 biopsies to fail to detect an existing cancer and I suppose there has to be a limit to how many tests a health centre will conduct. Also I don't think that a benign tumour is treatable with chemo, only with surgery.

Bubble, I'm sure you did everything humanly possible to help your mother and I hope in time you come to see this more clearly.

W&M xx

bubble
Posts: 8
Joined: Mon Jun 13, 2016 11:35 pm

Re: Do cancer cells spread faster after an abdominal opening

Postby bubble » Sun Jan 29, 2017 1:26 am

Dear Wife@Mum,

Thank you for the answer!
i'm not sure about the limits, but I guess that in this case they should have told us to go elsewhere, but they acted like everything was ok. I don't want to blame our oncologist centre though, because of course they didn't mean bad, and also my mom's blood tests results were normal at that time, and she felt totally ok, so it was deceiving.
I was searching to answer my question in the title, and sites say that a tumor exposed to air does not make cancer spread. So if it is the truth, then somehow a surgical biopsy should have been done for her to detect cancer. Unfortunately needle biopsies often give false results, and it seems even the EUS biopsy, but with opening up the abdomen one can get finally a certain diagnosis, I suppose.

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: Do cancer cells spread faster after an abdominal opening

Postby Dandygal76 » Sun Jan 29, 2017 7:42 am

Bubble, what I will say right now to you is that you are doing what so many carers around PC do and what I will do when dad succumbs... you are beating yourself up and you need to stop. Yes, you can get false biopsies, if the tumour is small then perhaps you did have multiple false negatives. It is a hard tumour to get to. Does a biopsy cause spread... I have had this debate with some pretty eminent people in this field and still biopsied dad (and you would likely still make that decision as well otherwise how do you try to know what to treat) and it is a 50/50 debate where some eminents believe it does and others do not believe so. But, don't think that way... the bloody things spreads anyway without any help whatsoever and it doesn't need help. Your choices did not change the outcome. On the open surgery nanoknife warriors on FB it has become an open discussion that surgery causes 'seeding' around the abdomen that a certain dr M in the USA is seeing more of. Well... I said to our oncologist it never spreads to the brain and he just said, that it is not rare but people do not usually last as long as dad. Unfortunately there are not the answers out there you are looking for. Your mum wants you live and let this go. I am a mother and I would not want my children to beat themselves up and live with regret. You had 6 lovely months with your mum and I envy that the same way you probably envy our fight with my dad. It is a sneaky vile disease... don't let it take the last victory... which is the life your mum wants for you. x

bubble
Posts: 8
Joined: Mon Jun 13, 2016 11:35 pm

Re: Do cancer cells spread faster after an abdominal opening

Postby bubble » Sun Jan 29, 2017 8:36 pm

You're right, and I wouldn't even feel that bad if she had gotten some treatment from the beginning. Losing her would still hurt, but I'd accept it more easily. Now it feels like not everything was done to her what could have been. If she had just lived some months more, it would be wonderful. Chemotherapy can send someone to remission even for 1 or 2 year in some cases. And I believe she could have lived probably much more than she did if they had gone further with those tests. But even if not, at least I would know now that we "tried" everything.

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: Do cancer cells spread faster after an abdominal opening

Postby Dandygal76 » Sun Jan 29, 2017 9:26 pm

Please stop searching for answers.. it really will not help any of you. You had 6 lovely months with your mum. We had less than that or more of sort of okay... and now crap. You would still feel awful whatever way it went. I wished my dad dead on Tuesday... the other option is not as rosy as you have in your mind. My dad was so health conscious that he knew his body and what was happening and so it was caught sort of early ish. I sort of wish right now he was taken out in weeks. You are not going to find the answers you are looking for and everyone on this forum will tell you I have been down every rabbit hole on this. You have to accept the outcome now. She is gone... the best thing is to accept that and move on. Just live... that is the best respect you can ever give her. x

bubble
Posts: 8
Joined: Mon Jun 13, 2016 11:35 pm

Re: Do cancer cells spread faster after an abdominal opening

Postby bubble » Fri Feb 03, 2017 12:12 am

Thanks for the answer! The reason I feel very bad is that she wasn't even given a chance to prolonge her life. She was so well for so long, that if she had gotten treatment, her positive period could have lasted some longer. But even if not, at least I'd know now that we tried. It would be easier for me.

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Do cancer cells spread faster after an abdominal opening

Postby Elaine123 » Fri Feb 03, 2017 8:48 am

Hi Bubble I know you feel that if this had happened or that had happened things could have been different. Pete my hubby was diagnosed and also had a few inconclusive biopsies and had the chance to have treatment and has been so ill we thought we were losing him. Since the day he was diagnosed and through his three chemo sessions he has been ill and now he is so frail any further chemo hangs in the balance. Your Mum did not go through that phase so please stop feeling guilty and treasure your memories. You are grieving sorely at losing your Mum and it will take a long time until you reach a place where you remember her with love and can weed out the unpleasant thoughts but it will come. Treatment would not have prevented the inevitable so please remember your Mum with love and make her proud. Remember having treatment may have prolonged her life but also may have increased her suffering to the point where she did not have quality of life only quantity and that's not what you would have wanted for your Mum. Stay strong.
Elaine
X

sandraW
Posts: 1032
Joined: Thu Oct 31, 2013 5:38 pm

Re: Do cancer cells spread faster after an abdominal opening

Postby sandraW » Fri Feb 03, 2017 12:44 pm

Hi Bubble,
Elaine has said it all, you have to be very well to tolerate chemotherapy treatment.
My husband didn't actually die of the disease, he died because his liver was failing and so they couldn't give him the necessary antibiotics after a procedure he waited over 4 weeks for. He actually died of an overwhelming infection, if he could have had the antibiotics would I have wanted him to live and then watch him deteriorate, no! would be my answer for sure.
We all go through the stage of what if's and if only's while we are grieving, its part of the journey
just try and remember the good times, we can't change what happened, its done and we never ever feel we did enough. take care love sandrax xx

bubble
Posts: 8
Joined: Mon Jun 13, 2016 11:35 pm

Re: Do cancer cells spread faster after an abdominal opening

Postby bubble » Sun Feb 05, 2017 12:14 am

Thanks all! I try to accept it, but it's not easy. I also find it strange that we didn't get a proper diagnosis until late. I know chemothrapy weakens the body, and of course I wouldn't have wanted her to lose the quality of life. But on the other hand, I read stories about patients whose tumor was inoperable, but getting chemo helped them go on for years, and they were relatively well for long. My mom was really strong, and I keep thinking some therapy could have helped her, but I guess these long-time survivings are very rare cases, are they?

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Do cancer cells spread faster after an abdominal opening

Postby Elaine123 » Sun Feb 05, 2017 7:41 am

We never give up hope that our loved one will be one of the long time survivors but what you have to take into account is age and levels of fitness at your Mums and Petes age our bodies are not able to always stand the rigours of chemo whereas younger people are stronger physically and able to get the full benefit of treatment. I guess this is the case for how we handle most illnesses and and maybe that's the way it should be as these young people have their whole life ahead of them and are able to be long term survivors and my hope is that they eventually make a breakthrough in PC and they will benefit further form it. May be a good idea to either phone or email the nurses here as they are fantastic at making it easier for us to accept things and do it in plain language that we understand. Try and leave these thoughts behind as they will stop you working through your grief and from going forward as your Mum would want for you.
Elaine
X

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: Do cancer cells spread faster after an abdominal opening

Postby Dandygal76 » Wed Feb 08, 2017 3:40 am

I have so much catching up to do on here but I keep thinking about what I posted to you. I am having a hard time right now and I am not sure I put it in the right context. Of course you don't just move on from the death of your mother. Of course you don't move on from the crap card life dealt you. But, you have to move on from the second guessing and the questions. I promise you there are no answers. I am sorry if I came across too blunt. x

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: Do cancer cells spread faster after an abdominal opening

Postby Dandygal76 » Wed Feb 08, 2017 3:50 am

I posted and did not read your update. Yes, it is very rare and mainly in the younger patients. You also need to know that my dad beat the original cancer but PC causes so many secondary issues. It is not usually the cancer but infection etc. My dads scans are being sent around the country right now because our hospital doesn't have Dr House (where is he when you need him?). For an older patient (bearing in mind my dad is now 64, never smoked, is not obese, not a drinker and a fitness fanatic) the outlook is a bit grim. ELAINE... that does not mean Pete wont be the lucky one. If he wants to fight then hope is more helpful than any medicine. Bubble, I am sat by my dads bed now after finding him in quite a distressing state. Treasure those 6 months, tuck them up and put them in a secret place in your heart and never let them go. Don't look for answers that everyone on here will tell you that you will never find. x

Veema
Posts: 498
Joined: Mon Feb 02, 2015 5:35 pm

Re: Do cancer cells spread faster after an abdominal opening

Postby Veema » Wed Feb 08, 2017 12:14 pm

Bubble...I totally get where you're coming from in that if she'd had some treatment, you'd have thought you'd given it your best shot...even now and seeing how poorly my husband was when he died, I still think 'what if I'd pushed for this treatment or that...what if we hadn't gone on holiday and got going with chemo instead if having a break' and I could go on...yes, it might have given us a few more months or whatever, but the overall outcome would have been the same...he was going to die regardless of what we did and in the end, he died of sepsis and it was quick and relatively pain free, which when I see how some struggle at the end of life with this disease, I do take some comfort from that.

It's just the nature of this particular beast I'm afraid...

Huge hugs

Vx

Marmalade

Re: Do cancer cells spread faster after an abdominal opening

Postby Marmalade » Wed Feb 08, 2017 7:16 pm

Hello Bubble,

I'm so sorry that you are still tormented by these questions. We are no strangers to them, every one of us has asked ourselves these things at some point. I could tell you that medical science is not perfect or complete. That opening the body and doing any invasive procedure at all is dangerous in some respect. That your Mum's quality of life may or may not have been compromised by treatments, that only 5% of people diagnosed with PC live beyond 5 years and most less than 12 months (mainly due to advanced age and having other complex health issues) but I have an inkling that in your heart of hearts you know all these things. Medical and personal judgements are made with the best of intentions and with the knowledge available and we, as the ones left behind have no option but to learn to live with them. You like the rest of us would like to be 100% sure that 'everything possible' was done. The trouble as Dandygirl has said, is that everything possible is not necessarily the right or humane thing to do. Judgements have to be made and lived with.

You say your Mum was strong and had a good 6 months after diagnosis, she also had you and her family and a life before diagnosis, a life that had value, still has value and goes on in you and all those who bear her genes. These are the things that matter not mourning for a short time that may or may not have been lost.

I hope you find comfort in the good life she had and in the life you can make even better because of her influence.

Very best wishes

Marmalade xx