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tumour

(46 Posts)
pippitysqueakity Tue 09-Jun-15 19:36:09

My DH has just had a coloscopy, and has a malignant rectal tumour. He also had a load of polyps removed.
We are awaiting the biopsy results and he has been booked in for a CT scan and MRI scan.
Just wondered if anyone had any experiences?

pippitysqueakity Tue 09-Jun-15 20:30:03

Sorry colonoscopy .

pippitysqueakity Wed 10-Jun-15 07:39:50

Bump, sorry am struggling here.

treaclesoda Wed 10-Jun-15 07:45:27

I have no real first hand experience of this but wanted to offer a hand hold - I'm sure you are in shock and upset.

Hopefully someone with knowledge will be along soon.

pippitysqueakity Wed 10-Jun-15 20:51:31

Ty treacle.

treaclesoda Wed 10-Jun-15 21:01:45

How have you both been today? How long do you have to wait for the scans?

pippitysqueakity Wed 10-Jun-15 21:21:27

Not sure, the info says 21 days but surgeon said about a week.
He was pretty sure an OP would be inevitable tho, and probably further treatment.
DH v stoic, I coped at work today but am v wobbly.
I am the earner so need to keep going.
Ty for your support treacle, it is appreciated.

Le1890 Wed 10-Jun-15 21:54:08

Hi

No first hand experience either just want you to know here to hand hold too.x

pippitysqueakity Thu 11-Jun-15 07:37:17

Ty Le

echt Thu 11-Jun-15 09:10:31

Bumping this to catch the attention of the thread for those whose DH/P's have cancer.

It was around a lot about year ago, but I haven't seen it lately.

mkz10 Thu 11-Jun-15 09:51:16

I had colon cancer 10 years ago. Was told I had IBS, asked if I could possibly have cancer, was told absolutely no way, too young ! Thanks to having private insurance and insisting on having a colonoscopy, my tumour was found early. I also had some polyps that were pre-cancerous.

My tumor was very low down in the colon. I had a colon re-section which removed about 60% of my colon, but fortunately I did not need a colostomy. My cancer was stage 1 and I didn't have chemo or radiotherapy.

It only took a few weeks to recover from the surgery (I had open abdominal surgery, but I think now they can do it with keyhole surgery)

It is such a terrifying time. I remember just wanting to have the surgery immediately, get that cancer out of me, so the wait for the MRI and CT scan was interminable.

I also had some other red herrings that showed up in the MRI, (be prepared for that, apparently it is very common to find other things that are innocent but need to be checked out). I had to have further biopsies but turned out to be nothing, but it meant I had to wait six weeks from diagnosis to surgery, fearing the cancer had spread, which was a truly horrible time.

Is your husband having a PET scan?

I hope all goes well for your husband and he gets his surgery scheduled soon.

mkz10 Thu 11-Jun-15 09:53:27

If you have any questions, feel free to ask. xxx

wannabestressfree Thu 11-Jun-15 10:00:34

Handholding as have a GIST (tumour on stomach wall) and look 27 months pregnant on one side. Am off this week (am teacher) but am going back next week. It's the waiting that's hard and because I am a complicated case I am not seeing my surgeon until the end of July and it's likely he will refuse to operate- then will need to see another surgeon at St marks.
It's hard, my mum has cried, my partner is sad and I haven't spoken to anyone else other than specialist nurse.
Anyway just wanted to say your not alone and I am glad things are moving in the right direction.
Am waiting for PET and more detailed scan - it's the waiting I hate.

WiIdfire Thu 11-Jun-15 11:26:09

No personal experience but work with bowel cancer. Sorry to hear of his diagnosis. The next steps will depend very much on the results of the CT scan and the MRI scan.

They are looking to see if the tumour can be safely removed with an operation, and to make sure there are no signs of the disease elsewhere in the body. The biopsy is to confirm it is a cancer, but often in bowel tumours you can tell by looking, so if they say it looks malignant, Im afraid it probably is.

Once the results are all available then the doctor will discuss the treatment steps with you. They may include surgery, chemotherapy and radiotherapy. The type of surgery and the order of the treatments will depend on the results, and not everyone needs all the treatments. Sorry it is too early to say for your husband.

There will be a lot of information at the results appointment so perhaps take a third person along to listen aswell? Also write down any particular questions you have so you dont forget at the time. Most hospitals have a nurse specialist - if you take their contact number you can then phone them to go over things again once it has sunk in.

Finally, I know the wait is difficult, but these tumours are fairly slow growing, so the fact that the whole process takes a few weeks wont make any difference at all, it is better to plan carefully and make sure things are done correctly, than to hurry through.

Keep posting on here - there will be a lot of people who have been through this and will have great advice.

wannabestressfree Thu 11-Jun-15 14:03:46

Wildfire what an interesting post. I think 'time' is a big thing. We see urgency in illness and cancer particulary. When my doctor said rapid to me I assumed wrongly I would be seen in a week not wait six weeks for the surgeon.
I just think we are programmed to think things have to be dealt with quickly and yet reading your post safely and slowly with care is better all round. To get things right.
It also feels weird going back to work saying 'it's all in hand'. Dr said go back if you feel ok. Advice is sketchy.
Anyway sorry to hijack. I hope you are feeling better about things....

pippitysqueakity Fri 12-Jun-15 16:13:31

TY so much to everyone who has replied, it is so useful to hear other's experiences.
There does not seem to be a PET scan ordered, on the letter from the hospital it says MRI and CT scans.
He did have a load of polyps removed and to be honest it seems some of his discomfort has eased which is good.
We have two young daughters.
It's hard.I always thought about how they would cope without me, not the other way round.

pippitysqueakity Fri 12-Jun-15 16:52:38

and a really stupid question.
Is a rectal tumour bowel cancer?

starsinthenight Fri 12-Jun-15 18:22:55

Pippity - so very sorry to read your post. What an enormous shock for you all, and with a young family.

My DH was diagnosed with advanced bowel cancer in the upper section of his rectum (so I guess that answers one of your questions) 10 years ago. My DD was 20 months, & I was full-term pregnant (waters had broken - had to await biopsy results that evening before I could allow myself to go into labour ...).

My DH had to have chemo, & radiotherapy to shrink the tumor, prior to surgery. He did need a stoma (colostomy) but only for 6 months, and the surgeon had to re-create a rectum. (His cancer was v advanced, and spread to his liver despite the chemo - so change of chemo drug and another amazing surgeon).

2.5 years of utter anguish treatment, but against the odds and thanks to the most amazing medics he has made a full recovery, and still in remission. Apart from his scars, very loud farts the whole time, and significant change in bowel habits - but at least he has them & not the bag! - he is fit, healthy, and you would never know.

I feel your pain totally. To this day. And yours Wannabe. The waiting is just utterly horrific. The not knowing. The having to tell people. The having to put on a brave face for DC's. The utter stomach-churning knots at every moment. But having to function at work too. That must be v tough (timely maternity leave for me!).

Advice for present time:
- stock up on DVD's and trashy books for you & DH. You need to pass time by keeping your mind occupied on very gentle stuff.
- keep nourished. If your DH ends up needing chemo he will loose appetite etc.
- focus your time / activities on the important stuff. I put up a bit of a facade and kept up all the play dates etc etc. I ended up very exhausted.
- put yourself first. Focus - all very well meant - will be on DH, medical updates, and DC's. But what about you? You will need to stay strong, as you will be managing everything. Make sure you keep up exercise, and girls nights out, and stuff to keep you sane. Take up all offers of help with DD's if you can.

Wish I had MN then for some support, and the fab advice. It was a very lonely and tough time. An enormous big hug for you.

Please keep us posted. Happy to help, or to go into further details on anything if you need. flowers

WiIdfire Fri 12-Jun-15 19:07:33

Some answers: (hope they dont come across as patronising, just hoping it will help explain things)

'Tumour' just means 'growth', so tumours can be benign (not cancerous) or malignant (cancerous). The histology will show whether it is cancerous or not, but if they said it looks malignant, then im afraid it most likely is.

Bowel cancers develop from polyps. So polyps are not cancers in themselves, but if left, some will turn into cancers over time. This is why he had the rest of the polyps removed, and will continue to be monitored for further polyps in the future. (They can take up to 10 years to turn nasty, so a colonoscopy every few years is sufficient).

A rectal cancer is a type of bowel cancer, the name just describes the location, I.e. It is located at the tail end of the bowel near the anus, rather than further up. The difference with a rectal cancer is that he needs an MRI (which higher up cancers dont) and I'm sorry to say it means there is a higher chance of him needing either a temporary or permanent colostomy (stoma bag).

PET scans are not routinely used in bowel cancer, so dont worry if he doesnt have one, only done if further info is needed.

Hope this is helpful.

wannabestressfree Fri 12-Jun-15 19:48:40

I have a permanent stoma already. Rest assured it's not that bad. I still work full time, swim, etc.
Thanks for your kind words stars and thinking of you pippety.

pippitysqueakity Fri 12-Jun-15 19:54:03

TY all, and TY Stars, v interesting and moving post.
Lots to think about, and thank you all again.

starsinthenight Sat 13-Jun-15 21:40:14

OK OP?
Hope I didn't scare you with the story of my DH. Just wanted to reassure you that despite the worst, there is hope.
Take good care.
Feel free to PM me if you need a hand-hold.

pippitysqueakity Sun 14-Jun-15 09:05:12

The scans have come through for next week, which is my daughters last week at Primary.
Then a consultant meeting for 1st July. It's funny, I usually book for me and the girls to go away the monday of the first week of the holidays so would be the 29th June this year, but for some reason have prevaricated. Am glad now so I can go to Drs with him, he is rubbish at retaining information.
Work/life mad just now, am sure I will drop one of the balls.
We really do not want to spoil DD2s birthday (Monday) or DD1s end of Primary experience.

pippitysqueakity Fri 03-Jul-15 14:45:54

DH needs 6 week 4 days a week radiotherapy, then chemo then surgery. Does anyone know if it is likely if he will lose his hair? He has been told is v likely will need a stoma and 50% chance of impotency.
Feel a bit sick TBH

pippitysqueakity Fri 03-Jul-15 16:38:12

bump?

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