Urgent advice on rectal surgery options!

Angela · New User Joined: 04 Apr 2005 Posts: 5

My Mother has just been diagnosed with rectal cancer and I am looking at surgical options for her. She saw a Doctor briefly today, he advised that because the cancer is close to the anus, she will need a colostomy bag permanently. She is more concerned about this than the diagnosis! The growth was too large to be removed at colonoscopy however, both an MRI and CAT scan show the growth is restricted to the bowel wall.

I have done a little research this afternoon, and understand that there is a surgery option that allows for the growth to be removed and then the colon connected to the anus to avoid the colostomy bag. Is this specialist surgery? Does anyone know where in England I can find out who carries out this surgery? She will pay for private surgery if necessary.

The doctor mentioned she may need Radiotherapy but he and other doctors are meeting at the Royal Marsden tomorrow to discuss the surgery and scans and will then come back to her. In the meantime, IF less invasive surgery is possible (I understand too that these tumours can be removed using a laporascope) I need to find out as soon as possible, as my own experiences with the NHS is that they dont necessarily explain all the opions to you, simply using the ones that are routinely performed.

Help please!

Thanks in advance.

Angela.

leo · Contributor Joined: 23 Sep 2004 Posts: 1575

Angela

Thanks for posting. Usually this type of surgery involves a colostomy, sometimes temporary, sometimes permanent. Also, at least with rectal cancer radiation is involved. Anal cancer is different, it is a completely different diagnosis. I understand that having a colostomy is not good news, but rectal cancer can be cured. Hopefully your mother can recover well and have a long life.

best regards,
Leo
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Leonardo F - Webmaster Cancer Forums
Disclaimer: this information is for informational purposes only. It is not medical advice.

Angela · New User Joined: 04 Apr 2005 Posts: 5

Thank you Leo, but the news today was better. The Royal Marsden (UK London cancer hospital) had the case referred to them and a colorectal nurse called my Mother with a better outlook than the surgeon she saw yesterday.

Basically, the cancer has affected both the anus and the rectum, making saving bowel function if relying on surgery very difficult indeed, but, strangely, (that?s me talking, it might be quite common), the anal cancer is squamous cell and the rectal is Adenocarcinoma. It appears to be confined to the bowel wall and has not spread anywhere else.

Next Wednesday, they will start both chemotherapy and Radiotherapy courses at The Marsden and will try to shrink both cancers. Apparently, the squamous cell responds very well to chemo and often having this combined therapy shrinks the tumours completely making surgery unnecessary. She will be scanned on a regular basis to monitor progress. If the tumours fail to respond to therapy or it does not shrink them completely, then obviously surgery will be the next step but hopefully it will improve surgical options at a minimum, plus I have located a hospital that carries out this sphincter saving surgery and they tell me there are several in the UK.

So, to sum up, the chances of surgery have diminished or at least been put on hold for now, and it was good news to me, as this fell in line with the hours of Internet research I did yesterday.

It is a pity the surgeon was not quite so helpful at the consultation, it would have saved a lot of stress.

I appreciate that when it comes to life and death, colostomy is not the end of the world, but it does concern me that newly diagnosed patients, many without acces to the Internet, are not necessarily having their disease process explained properly or perhaps not even being offered the best treatment options and in particular to this case, it should have been explained that a colostomy was the worse case scenario, not a given.

Thank you again Leo.

Angela.

dizzybuff38 · Posted: Wed Apr 06, 2005 7:22 am Post subject: Colon and and anus cancer

Hi Angela - you really are in good hands with the Royal Marsden, but if you want a second opinion you might try St. Marks Hospital at Northwick Park, Watford Road, Harrow Middx, Tel: 0181 235 4046 - it is the only committed gastroenterology hospital in England and has some remarkable doctors. I contacted them when I was going through chemo for breast cancer as I also have panCrohn's disease and there was a problem with controlling the Crohn's. I had a quick reply from one of their Professors ( Prof. Alastair Forbes) and this helped sort out my treatment during the long months of chemo and radiotherapy.

You might also ring the National Association for Colitis and Crohn's Disease, (NACC) 4 Beaumont House, Sutton Road, St. Albans, Herts AL1 5HH. Tel: 01727 844296 since both Crohn's and Colitis carry a high risk of cancer of the colon and they may be able help you with surgical queries.
Hope you get the best treatment you can for your Mum.
Liz.

cake · New User Joined: 25 Jan 2005 Posts: 6

Hello Angela,

Have a look on the post below your ("address and reference") or on
[url]http://www.pelicancentre.com/[/url]

I personnally had to do with them (my husband and I came from abroad to have a 2nd opinion, and we decided to do he surgery with them)

Ask for a second piece of advice if you need.

I do agree with you about the fact that doctors may not be very helpful (or communicative) at consultation. Unfortunately, it's common everywhere. I saw that in 2 ... cancer specialized centers !

Wish you the best for you and your mother
_________________
cake

Angela · New User Joined: 04 Apr 2005 Posts: 5

Thank you Liz and Cake for your helpful replies.

Liz: I will add this hospital contact to my list, and how fortunate for you to get a swift response from a Professor.....it kind of restores ones faith in the system doesn't it, there are some amazing and dedicated people out there. I hope that your illness and treatment is now behind you.

Cake: This link was very interesting, as it was the Basingstoke NHS trust Bowel Cancer Specialist Unit that I contacted following my Mother's diagnosis, basically because there was tons of Internet stuff on the team that pioneered the surgery in the first place from that hospital, but this charitable trust, I wonder is it part of the same thing or a separate entity? The list of consultants appears to be the same but the contact details are different, perhaps they flit between the different units. I will certainly look into this. Was the surgery successful?

Again, thank you both for taking the time to reply.

Angela.

cake · New User Joined: 25 Jan 2005 Posts: 6

Hi Angela

I don't know much about charity entity in Pelikan Centre (I know they got funds from people who want to give, but that's all). During our journey there, I just saw the surgical part and was not "called" by a charity team, althought there were many "advertising" about it (i don't have the right word)

My writing was just about the surgery team, lead by Pr RJ Heald, who perform the surgery on my husband (very low resection , < 1 cm fom anal verge) and that succeed. Heald was the last reference for us (we found this on the Internet). We live in France, and there, 2 specialist told us that permanent colostomy was the only solution for us.
Living all you life with this prothesis is psychology hard, and doctors don't say that ! It may cause suicide, because what is behind and controlled becomes forward, seen, not controlled, and noisy. the social and professional life is affected, deeply.

About NHS in Basingstoke, I can say we were well received. They were the only one to ask if - being the pateint's wife - I needed something on a medical point of view (to get less nervous in this period). In France, specialists take care of the patients, but not the relatives (at least the 2 that I saw). My advice is : if Heald tells you it's possible : he'll do the maximum for that.. He has more than 25 years (and statistics in return) about his surgical methods. He's not over the others one in the world for a small reason! And his collegues (Cecil for example) operate with him.

I got nothing to earn by saying that, that's really our experience. And we came abroad for that. Even if we have some others problems (metastasis in lungs) we are happy to have done that. We don't have the hardness to live with such a prothesis.

Kind regards
_________________
cake

leo · Contributor Joined: 23 Sep 2004 Posts: 1575

Angela,

I am glad you have excellent physicians. Your mother's case is not common, to have anal and rectal cancer at the same time. It is certainly a specialist's case, and I am sure there are no clinical trials for that given the rarity of it. But it sounds she is being taken care of, and I will certainly hope for the best.

regards,
Leo
_________________
Leonardo F - Webmaster Cancer Forums
Disclaimer: this information is for informational purposes only. It is not medical advice.

Angela · New User Joined: 04 Apr 2005 Posts: 5

Thank you Leo, I will try to keep the forum posted on progress, in case any experience gained can go on to help others.

Angela.

Angela · New User Joined: 04 Apr 2005 Posts: 5

Hi Cake,

I am assuming thr Pelikan centre is perhaps the private clinic whereas The Basingstoke NHS trust is part of our health service. Did you have to pay for treatment?

Thank God you were able to find a Surgeon you felt comfortable with. No one can perform miracles but it is so important to feel you are in safe hands. On the subject of colostomy, it can cause great emotional problems for some people, perhaps a loss of dignity, some cope better than others, it is very personal.

I am so sorry to hear your husband has lung related disease....this must be very hard to cope with but you are clearly continuing to face this disease with immense courage. I thank you again for taking the time to relate your story, it cannot have been easy, but it is important to share experience with others.

Please take care,

Angela.

cake · New User Joined: 25 Jan 2005 Posts: 6

Hello Angela,

To be more precise about the private clinic and NHS :
this surgeon (Heald) works in 2 different places :
the North Hants Hospital (NHS) and
the Hampshire clinic (private)
Both in Basingstoke (or a bit outside, exactly)

Those 2 establishments are totally distinct.

The "pelikan centre" is in the North Hants Hospital, in a separate building, just behind the hospital.
It seems (to me) that Pelikan Centre has also a role of communication in the Surgery world (conferences, documentary database). Don't forget that they publish in medical scientific journal.

Of course, as we are French, we had to ask the authorisation to our French Securité Sociale (that has accepted at the last minute, 2 days before we go. Anyway, we had organised this, even if French administration said "no").
And we paid the complete operation (yes, no doubt, expensive, but for such a problem, you understand clearly that health is first). Our French Caisse de Sécurité Sociale reimbourse a big part (70%).... a loooong time later ! To say clearly, we took a credit in our bank. Now this money problem is over. The NHS system is like ours, but not totally. I can't help about administrative "tips".

I had a great help from the North Hants Hosp. to find where to sleep qnd eat during my journey there. It was simple and very pragmatic, exactly what I needed, and even more ! When you're far from home, abroad , for such a reason, you don't look for a palace. And they were really friendly for us, for everything, from the most simple employee to the surgeon.

You know why my writing is "emphatic" towards them, now Wink

Kind regards and keep holding on
_________________
cake

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