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Jenny7

Fearing the worst

Hello everyone, thank you for sharing your experiences, I can see how much you are helping one-another in times of need. The medical teams are so busy with limited time on their hands, especially with covid creating a huge backlog of cases. There is a mine of information on this site, I am so grateful to have found it - grateful to all you kindly contributors for sharing knowledge and experience.

Please can you help with any advice. Following dental treatment a few months ago, my husband Tim, had to take a course of strong anti-biotics and ibuprofen. This upset his stomach long after the infection had cleared. He was producing too much acid and rushing to the toilet 15 - 30 minutes after each meal. With this problem ongoing and additionally spotting blood in his faeces on one occasion, he contacted his GP who referred him on a 2 week referral. After a series of scans, bloods, endoscopy and colonoscopy we are expecting to hear the results and prognosis following the MDT meeting yesterday. The first appointment for a CT on 12th August revealed a mass in the upper rectum and an urgent MRI scan appointment was made. An endoscopy and colonoscopy was carried out a few days later on the 15th August.
We went from thinking my husband had a stomach ulcer, to being told he had a large mass in the upper rectum. The nurse added that it was widespread, but Tim didn't hear that part of the conversation while still in his semi-sedated state.
Only the upper gastrointestinal problems were causing problems, he was totally unware of the more serious, silent problem lower down.
Following the colonoscopy, the specialist nurse told my husband he had a 2cm polyp of little concern, but further down, a polypoidal tumour was most likely malignant. I was called into the meeting totally unaware of the findings, though my husband had been told about the mass seen on CT before the colonoscopy procedure began.
During the post-procedure discussion, my husband mentioned treatment options, to which the nurse replied that some people decide against having treatment. This was all too shocking for me to absorb without warning, my husband has widespread cancer and I took this to be untreatable - we were looking at palliative care.
I'm hoping the MRI scan will give us some hope, perhaps it is treatable or operable after chemo or radiotherapy, perhaps it isn't as bad as it looked during the colonoscopy procedure. The gastritis and oesophagitis are now much better with Nexium, so Tim is feeling well once more, except for the awful waiting for results. After the dental treatment issues, Tim lost weight and is now only 9st, despite our attempts to beef him up in readiness for treatment.
I've looked at the leaflets available on line, but wondered what are the most important questions we should ask when the nurse telephones tomorrow or Friday? I am getting into quite a state about this. I'm up all night worrying, my husband falls asleep as soon as his head hits the pillow, the long nights are unbearable - I know you have all been there! Many thanks!

Chalet

Hi @Jenny7
Sorry that you're here. It's completely understandable that you're worried but once you know what's what, it'll feel a bit easier. Your husband will have a great team around him and there'll be support for both of you. It's a scary time but you can get through this. There are lots of inspirational stories on here, full of hope and positivity.
Cheryl :x:

stevejl

Hi @Jenny7 I am sorry to hear what you are both going through.You have already had great advice & support but unfortunately we are human & our imaginations do run wild particularly when we are waiting for the treatment plan as I know mine certainly did.
But thanks to the support & advice from the members of this forum they have got me to where I am today so stick with us & we will be with you on your journey as you both move forward.
Sending love & hugs to you both
Steve
:x::x::x::x:

ElaineG

Hello @Jenny7 I see that you have had good advice and I too would say don’t rule out a second opinion if you’re not happy. I really don’t think a nurse should make such sweeping statements before all test results are available and the medical team have had the MDT meeting. I know exactly how you are feeling but don’t give up hope, there are many options and treatments available. It is 5 years since my husband was diagnosed and I was in the same scary place you find yourself in. Any questions or you just need a virtual hug, someone here will be able to help. Thinking of you and sending love. Elaine ♥️

Jenny7
Quote from @Lirio345:
Good morning @Jenny7, a very warm welcome to the forum although I am so sorry to hear what your husband has been going through.

I suggest you both disregard the notion of not having treatment - Bowel cancer can be treated long term even if it is not curable. There is a lot of information lacking at the moment such as where the metastases are as this obviously has an impact on treatment. Although you are at the start of this, please consider a second opinion if by any chance your husband feels he is not being offered a robust treatment plan.

You both need to give yourselves time to process this and please stay in touch and ask anything at all. It would be good if your husband joined the forum as well. I have included a link below that may be of some help. Take very good care, Kim :x::x:

www.bowelcanceruk.org.uk/...ur-publications/questions-to-ask/

Thank you very much for the warm welcome Kim and for the excellent advice. Since my first post we had a phone call from a lovely, bubbly nurse who was at the MDT meeting. Even though we are still missing key information, we both feel much better having talked to someone more positive. On Thursday, Tim took a call from someone in the Endoscopy unit saying that Tim needed a sigmoidoscopy. This is booked for this Saturday morning. Today (Friday) a nurse rang to give us some details about findings so far and the need for further tests. She said the tumour is large, but didn't say how large (Tim didn't ask). She said they needed more biopsies due to unusual cell activity that isn't cancer. "You do have cancer" she said, "but we need to take samples deeper within the tumour to establish the type of cancer you have". I guess this is essential so they can tailor the exact treatment type. The nurse was evasive when Tim mentioned surgery, but he didn't probe further. We were really pleased when she said an urgent PET scan was being arranged for next week, I understand these scans can reveal more about cancer spread than CT or MRI alone. We feel so lucky to have access to all this fantastic technology. This forum is excellent, largely due to everyone taking the time to share experiences and offer emotional support - many, many thanks - Jennyx

Jenny7
Quote from @ElaineG:
Hello @Jenny7 I see that you have had good advice and I too would say don’t rule out a second opinion if you’re not happy. I really don’t think a nurse should make such sweeping statements before all test results are available and the medical team have had the MDT meeting. I know exactly how you are feeling but don’t give up hope, there are many options and treatments available. It is 5 years since my husband was diagnosed and I was in the same scary place you find yourself in. Any questions or you just need a virtual hug, someone here will be able to help. Thinking of you and sending love. Elaine ♥️

Thank you very much for the advice Elaine, Since reading the replies, I've managed to sleep 3 hours solid, which is the first time in weeks. I'm really pleased to hear your husband is still by your side, 5 years on. I'm sure, like me, you feared the worst. Getting more positive information from the MDT meeting has given us such a lift, even though we are no clearer on the full extent of the cancer yet. Sigmoidoscopy and PET scans will be carried out within a few days/week, so we should have a better understanding of our situation in the next couple of weeks. I've mentioned in my reply to Kim that unusual cell activity has been discovered in addition to the large cancerous tumour. Oddly enough, this isn't frightening due to the skill of the nurse who rang yesterday. I will post details of the results as they come in. Thanks again for sending love and support, it really helps in the 'wee small hours'. Love Jenny :x:

Jenny7
Quote from @stevejl:
Hi @Jenny7 I am sorry to hear what you are both going through.You have already had great advice & support but unfortunately we are human & our imaginations do run wild particularly when we are waiting for the treatment plan as I know mine certainly did.
But thanks to the support & advice from the members of this forum they have got me to where I am today so stick with us & we will be with you on your journey as you both move forward.
Sending love & hugs to you both
Steve

Thank you Steve, my 'over active' imagination is already settling, thanks to the good advice and warm welcome from the forum members. We've since had a chat with a positive, helpful nurse following the MDT meeting. More tests are needed before we can get a full picture. We are so impressed by the speed and availability of testing, though human contact has been limited due to NHS playing 'catch up' following the covid nightmare, though we do understand the pressures on the NHS staff. The forum is all the more important because of this. Thanks a million, will keep you updated as we journey down the 'well trodden' path that lies ahead. Love and hugs to you too!

Jenny7
Quote from @Chalet:
Hi @Jenny7
Sorry that you're here. It's completely understandable that you're worried but once you know what's what, it'll feel a bit easier. Your husband will have a great team around him and there'll be support for both of you. It's a scary time but you can get through this. There are lots of inspirational stories on here, full of hope and positivity.
Cheryl

Thank you very much Cheryl, yes, it's a shame we are all here, but I feel I have found precious new friends. I've posted a more detailed update on my reply to Kim, further tests required and we've had our first positive chat with a lovely nurse who attended the MDT meeting on Wednesday. She is so different from the nurse who painted a picture of impending doom when she delivered the news of a widespread cancerous tumour. I think I interpreted this as 'widespread' throughout the body given they had access to the full body CT scan and we didn't. This appears not to be the case. The tumour is large according to yesterdays conversation (my husband didn't ask for details of size, not ready for it yet), but only 2 lymph glands seem to be affected so far. Organs seen on CT seem to be normal. This is great news, but the PET scan will hopefully confirm 'no further spread' This will hopefully compensate for the tumour being large. We are curious about the unusual cellular activity found in addition to the tumour. We have been told that biopsies need to be taken beneath this unusual cellular activity, deeper within the tumour to gauge the cancer type. The wait goes on, but at least we have access to the amazing NHS, wonderful technology and the fantastic support and friendliness from the forum members. I'll let you know the outcome of the tests and prognosis, as and when, this is made available to us.
Thanks again Cheryl
Love Jenny :x:

Jenny7
Quote from @Mrs ALS:
Hi @Jenny7 I'm so sorry to hear what you and your husband are going through. Immediately before I read your post, I had been looking at some of the 'personal experience' posts. Ruth Wilkins story in the real life experiences section of this site, might give you some hope. It often seems that the story can change a lot as you go through this process and as Kim says, there's a lot can be done. There are many people here who are testament to that.
Wishing you both all the best as you move through this very difficult stage.
Take care, lots of love
Louise

Hi Louise, thank you for your reply and for details of Ruth's experience. I will read it tomorrow along with other member stories. I have to remind myself that people half our age, and younger are going through this, it must be awful when you have young children and fear you won't see them grow up or attend their milestone moments such as wedding day, etc.
I've seen a couple of posts where inoperable tumours do eventually become operable after treatment. We don't yet know if this is the case with Tim (inoperable), he wasn't ready to hear details of size yesterday. In addition to the cancerous tumour, they have found unusual cellular activity that isn't cancerous. We are intrigued by this, but will hopefully know more in a couple of weeks. The nightmare wait has been alleviated by the wonderful responses and information on this forum. Everyone is so helpful and supportive, I'm so glad I found this Forum in the early days. So sad though that many are worse off than my husband and I. Many thanks Louise, I'll keep you all posted with progress as we learn more.
Take care yourself, Love Jenny :x:

Jenny7
Quote from @Michelle74:
@Jenny7 . Hello and welcome but sorry that you find yourself here. I remember the wait very well, my mind went into overdrive and it was my every waking thought. Not long to wait now and the anxiety will ease when there is a plan in place. Good that your husband is feeling well at the moment. The nurse told me to try to exercise every day, are you able to get out for some walks, some fresh air does help. Good luck for tomorrow, let us know how it goes.

Thank you for the warm welcome Michelle. Further tests and biopsies are required, so the wait will continue for a couple more weeks. Tim is able to switch off, sleep like a baby and listen to the radio with full concentration, he is still singing in the shower. I, on the other hand have been losing my mind and can think of nothing else. The NHS tests have been amazing in speed and availability. The human aspect has been less positive, though we are constantly reminding ourselves of the herculean effort of NHS staff during the Covid crisis and the ongoing strain due to the backlog of cases. Just one call from a positive, bubbly nurse yesterday has made all the difference, even though we are no further with results yet. Your reply along with those of the other forum members has helped so much, thank you for the tips and the 'good luck' wishes, I am already feeling much better. I'm sure I can better support Tim when he needs it, if I am in a more positive and strong frame of mind.
Will keep you posted, with heartfelt thanks - Jenny :x:

Jenny7
Quote from @Baxter2:
Good mor ing @Jenny7 and another warm welcome to the forum!

I'm so sorry to hear of the turmoil you're going through at the moment. This period awaiting the diagnosis and treatment plan is often one of the worst as your mind goes over every possible scenario and fear. We can almost all relate to that feeling having bee through it too.

I note the MDT meeting was yesterday so it will be good to think about paper and pen by the phone and also to put the phone on speaker so that you can hear what's being said to your husband. It's often difficultly to properly 'hear' what is being said with one pair of anxious ears. If you have questions afterwards, make sure you get a contact and number to call and this may we'll be the specialist nurse or colorectal nurse. Please continue to post on here and please let us know how things go with the news. We're all here for you. I also strongly urge your husband to join up too. Being your own advocate is so important in my opinion.

Sending lots of love to you both,

Karen 💜💚❤️💛💙

Hi Karen
Thank you for your advice, I'm already feeling so much better for the support and brilliant advice from the Forum members. Tim is a much stronger and clear-headed person than I am. He is naturally 'mindful' and 'matter of fact', though this event will test his strength for certain. I have to remember that this is about 'him' and I must remain strong to support him - the positive energy by way of support and advice from the Forum members is already boosting my resolve.
The wait continues as Tim has now been booked for a sigmoidoscopy and PET scan, we are so lucky to have access to this technology, but will have to wait a further couple of weeks to get the full picture and treatment options.
Tim had a chat yesterday with a nurse who attended the MDT meeting on Wednesday.
She was brilliant and very uplifting, even though we still don't know the full extent of tumour growth and treatment options - what a difference a few days and a few supportive comments can make. Thank you so much - will keep you posted, Love Jenny :x:

Jenny7
Quote from @Lucy118:
@Jenny7, I’m so sorry you find yourself here because of your husband. The waiting is definitely the worst. Once he has a treatment plan hopefully things will be easier. Do consider having a second opinion though if you’re not comfortable with the plan. I’ll be keeping everything crossed for you both. Lots of love

Thank you for the advice Lucy. We must wait a little longer for the full results and treatment plan. Following the MDT meeting, a sigmoidoscopy and PET scan has been requested, I think we are looking at a further two weeks minimum before we know the way forward. We will definitely take your advice of a second opinion if we are uncertain or don't like the look of the treatment plan when it is put to us.

Thank you for your advice and support, it's very much appreciated. I will keep you posted with progress as time moves on.

Many thanks again, Love Jenny :x:

Molly2me

Hello @Jenny7 I’m so pleased you have found everyone here, invaluable support is just that! I see you’ve managed your first real sleep, that must feel wonderful, we are amazing how we respond and break things down until our brains can absorb the information and there’s no set time plan for this. It’s a huge shock for you both and the team behind you are fully trained to help. You’ve already had some great advice, the list of questions are so important, together or separately from your hubby and never be afraid to call them back, as overload of information can render us brain dead, well it did me anyway!

Your treatment plan isn’t far away, sending huge hugs of support for you and your hubby :x::x:

Lirio345

Hi @Jenny7, it is good to hear that things are moving forward and it really will feel better once a firm treatment plan is in place. Just to pick up on one thing you fed back, which is that ‘tumour is large’. The size doesn’t necessarily indicate the stage of the cancer so please park that fact for now! Take care and keep busy, Kim :x::x::x:

Jenny7

Many thanks to all of you for your kind and helpful replies. This was my first post and early days in my husbands diagnosis. Often, when told your loved ones has cancer, you immediately imagine the worst....we were left in no doubt, as the colonoscopy nurse said my husband has rectal cancer and it is widespread.
A very strange development has happened since then. After a CT Scan, Pelvic MRI scan and full body PET CT scan, we've now learned the tumour is 2 :x: 5 cm with no spread throughout the body. Two lymph nodes were enlarged a few weeks ago, but now only one has been picked up as inflamed by the recent PET CT scan. After the initial 'doom and gloom' diagnosis from the endoscopy nurse at the outset of tests, all biopsies have come back as inconclusive. 2 colonoscopies have been carried out with 36 samples being taken and not one cancer cell has been found. All samples are showing as 'unusual cellular activity that isn't cancer'. A third (sigmoidoscopy) attempt is booked for 6th October as treatment can't begin until cancer cells are found. The pictures taken from the original colonoscopy do show a blackened, ugly tumour with a much larger area of ulceration around it. I think it was assumed the ulceration was cancerous activity which might be why the nurse said the cancer was widespread. On the second attempt to collect cells from the tumour, the consultant used jumbo forceps. This is all dragging on a bit, but we can't complain if no cancer cells have been found. During the telephone conversation with the nurse co-ordinator who rebooked us for the 3rd attempt, she said, there is cancer present, don't be in any doubt, we just haven't been successful in isolating the necessary cells.
Has anyone else had an experience like this?
We are tempted to wonder if this is a benign growth, but don't want to get our hopes up. After the initial 'widespread cancer' message, we are really on a 'high'. It appears, the tumour isn't widespread, it's not as big as we imagined and not all the cells are cancerous. If some are, but not the whole tumour, perhaps this would indicate a non-aggressive cancer as surely aggressive cancer cells would be easily harvested within the tumour AND would likely have spread by now. We don't like to raise our hopes, but feel very lucky, but I'm not sure why OR, if we should feel lucky - it's all a mystery!
We are wondering what will happen next if the 3rd attempt doesn't reveal any cancerous cells, by the time they have finished taking samples, perhaps there won't be anything left of the tumour, lol!
Hope you are all well and having a good day despite the awful weather. At least the weather is keeping us at home rather than driving around looking for fuel!
Sending positive wishes to you all Love Jenny :x::x::x:

Stella 2020

Hi @Jenny7 , glad to hear the news re your husband’s tumour is actually pretty good if still a bit confusing. I found sometimes the nurses and junior doctors are lovely but not always accurate, to the point, and know the whole picture. Is there anyway you can get hold of the consultant in charge to have a discussion? Who will carry out this 3dr attempt? Is there anyway get a consultant to do this? Does the PET scan show any activity on the growth itself at all?
Overall great news and hope you can get the clearer picture soon. Take care :x::x:

Lucy118

@Jenny7, this is all sounding very positive. Keeping everything crossed for you both :x::x::x:

Gypsy

Dear @Jenny7, what a horrendous experience and I haven't heard anything like it before. Talk about curved balls! I hope and pray that there is no cancer and it certainly is sounding way better than before. Please let us know how it goes and thinking of you. Love Cathxx

Jenny7

Thank you Stella, Lucy and Cath. It is certainly confusing, but in a positive way if they are struggling to find cancerous cells within the tumour. I'm sure they will find some eventually, but staging can't be made and treatment can't be started until cancer cells are isolated. I'm sure so many people on this forum would dream of having this problem, so no complaints. Far better than finding an abundance of cancer cells. Dare we consider that the tumour is a nephrotic large polyp that has twisted on the stork and not yet cancerous. The colour temperature on the PET CT scan should have revealed cancer location within the tumour. Bright spots can show more aggressive or fast growing cancer cells, if only we could talk to someone who could interpret the full scan result. As we haven't had the chance to talk to a consultant since tests began in early August, we have booked a private consultation for this Wednesday, hopefully, he will answer all my husbands (our) questions.
Thank you again and thanks to all the contributors on this site, it's truly inspirational.
Love Jenny :x::x:

Molly2me

Hi @Jenny7 what a journey that seems full of confusion but with a lot of hope :x::x: Seeing you have put in a request to speak to your husbands consultant just to normalise everything this Wednesday is good news too, the sooner you can discuss the better. Hoping all goes well for you both and to plan, thinking of you lovely for tomorrow :x::x::x::x:

bowelbehavingbadly

@Jenny7 I hope things went well yesterday at your appt. Sandra :x::x::x: