Cancer support thread #74 - come in, we're here for you.

[Hippiechick162]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread iswww.mumsnet.com/Talk/general_health/3760336-Cancer-support-thread-73-come-in-were-here-for-you

Current members, please do introduce yourselves smile

Ah thank you @Bloodybridget
Not too bad thank you . Boob Expander has now had 110mls in and is looking better and is more comfortable .
Coldsore gone apart from little rough patch that I am keeping moisturised and not picking !
Hospital again this week for more inflation and then next week for Herceptin .
It’s the only place I go !
But I am trying to get a local isolated walk when I can .

Thank you for welcoming me. I'm going to keep reading your posts, and keep the thought I'm not alone,and get some perspective and bravery from you all.

@Bloodybridget Thank you for thinking about me. Still in limbo waiting for next steps/results. Constantly worrying which I hate. I'm usually stronger then this.

Sending everyone a bear hug today and hope it's a good day for you. 🐻

Just had call from consultants secretary. He wants to see me tomorrow morning. No other information given. Anxiety sky high!

Hi all, not been on here for ages and just popped in for a catch up.

@happyjack12 i was scared of coming and reading your stories
You did the right thing posting on here, it was an immense help for me during some very dark times from last July to February. Other people going through exactly the same or similar was actually useful and there was much mutual support. The stabby pains are the nerves pinging back. You may notice large areas of numbness around your arm and as far down as your elbow. This is caused when the surgeon takes out the lymph nodes. Most of the nerves recover but it hurts while they do it. Some may be permanently numb. Do the exercises as you have been told, I was told to time them half an hour after taking my painkillers.

I did drop out of the thread once my treatment was over because I have so many stresses in my life and following cancer would be a constant reminder that It Might Come Back.

Hi @happyjack12, sorry you've had to join us on this thread but everyone here is supportive.

I was diagnosed with stage 3 TNBC back in November. I had a 5cm tumour, which was spreading throughout the breast, and positive lymph nodes. I had to have neo-adjuvant chemo. I started with 4 cycles of paclitaxol and carboplatin. At the end of the 4 cycles I had a MRI (as part of a research trial I was on) and the tumour plus the rest of the cancer couldn't be detected. They cancelled the rest of the planned chemo (3 cycles of FEC) and sent me straight for a mastectomy and node clearance. The biopsies were clear and I'm now 5 weeks post-op and two weeks away from radiotherapy, then I'm done.

TNBC always sounds very scary but if caught early enough it responds really well to chemo. I wasn't as ill on chemo as I thought I would be. Your team will help as much as possible to manage the side effects and help you to cope.

I hope everyone else is well and coping. My update is I had my radiotherapy planning meeting yesterday. It all went well. Due to having a left side MX I'm having to breathe hold during treatment but I got lots of practice yesterday. Treatment starts on 15th and it's the new 5 session protocol. I can't believe I'm nearly finished with treatment

Thank you for the advice and your stories.
get my results next friday to say if margins and nodes clear.bricking it, but at least i'll know the plan.Not knowing is the worst for me.

I've been almost tatally isolateing since end of march, as i had the virus quite badly, just started recovering and then i found the lump.

My son has been stuck with me all that time.He is 19, has aspergers, and occaisional low times, but has been amazing.He had to give up his volunteering job, which was devastating for him.
When i have chemo, how careful does he need to be, regarding my immunity? my "D"P ( we don't live together) has said my son shouldn't be allowed to mix with his friends etc (after lockdown i mean) because of me.
Any thoughts? Thank you.

Hope everyone is doing ok. I had a call this morning to book an X-ray on my shoulder. Immediately panicked that there was something else I needed to worry about. Called my cancer nurse who checked with the consultant and told me it's nothing to worry about but they need to be extra cautious. Also turned out they have a space for my op on Wednesday.

That posted before I'd finished.

Anyway, the rest of the day has passed in a blur of calls and emails form the hospital. My consultant called as well and also reassured me that a very tiny shadow had shown up on my chest X-ray, hence the need for the closer shoulder one. But he did say it was very unlikely to be anything to worry about.

So I'm booked in for a pre op on Tuesday and op on Wednesday. Just need to stop worrying for the next few days now. This time next week, hopefully it will all be over and I'll be back home.

good luck for theevents this week DivisionBelles
sounds like they are looking after you well x

Consultant thinks it's an early stage. Said that it looks about 5cm long and covers both sides of the rectum. Talked about surgery's stomas etc but to be honest I think my brain short circuited and a lot of what he said was bit of a blur after the word cancer. Won't know until after it's excised if there is cancer underneath given it's shape. I haven't told anyone I don't think I can until I process. I'm scared. Have to wait and see another Colectoral surgeon who will decide on what type of surgery I'm suitable for. Now I know , I wish I could go back to yesterday when I had the veil of uncertainty. But as doctor said one step at a time.

Love to all. X

gillemoregirl
sorry to hear the outcome of your appointment, no wonder you couldn't take it all in.
have you anyone to chat it over with, when you are ready of course.
sending you best wishes, take care x

@happyjack12 I am very Lucky to have a great husband. I'm not ready to share with anyone else at the minute. His family thrive on misery and I don't want to be spoken of in whispers and doom and gloom. I need to stay positive and have downplayed it to my teenage daughter at the minute because until surgery I won't know exactly what I'm facing. Have told her that they have found 'wee lump' that needs removed. At this stage that's enough. Maybe I'm a coward but that's how I'm dealing. I'm so sorry that you are dealing with your own diagnosis. I found a Instagram account called the patient story and I found some positive stories about cancer survivors. Wide range of cancers are covered. I found it very comforting to see how others have dealt with diagnosis and treatment. Unfortunately I'm on a old phone and find it hard to keep up with posts here which is why I struggle with name checking but I am grateful for the dialogue.

Wednesday (27th) I had to have a check on my bladder and kidneys as I have had some blood in my urine. My bladder and kidneys are fine however the scan has sown some abnormalities around my ovaries. The Dr that had performed the scan phoned me the next day to tell me the results and that it could be cancer. I was asked to go to my G.P and get some bloods taken (within 24hrs) and that I would be hearing from the Gynae team. I'm trying to hold on to the fact that 'could be cancer ' is not 'you have cancer ' but the speed and urgency of the response to this worries me. I just feel numb, being shielded and lockeddown doesn't help.

@Lizdeflores I had cysts on ovary two years ago and was told that they can never be sure if it is cancer or not until they are removed and tested. Mine wasn't then. Hopefully whatever is going on with you will be of similar result. It's scary waiting I know. Hopefully someone with better advice will be on soon. I just wanted to wish you the best as understand too well the anxiety you're feeling.

Thinking of everyone else and hoping that you are doing ok. It's been rather quiet. 💐

Thank you gilmoregirl I really appreciate the support. It is a great comfort that these forums exist and a credit to human kind that we can find it in ourselves to offer our experience and support to others during difficult times.
I hope everyone is doing well x

@gillmoregirl

V sorry - I've only just caught up with your news. I think you're doing the right thing about not telling the ghouls till you get your head straight. You need some time to think how shit this is and why me? But you will feel better when you see the second surgeon and have a timescale.

'Early stage' is huge - and that will help you deal with whatever comes next. It's easier for me to be a Pollyanna because I don't have a partner or a teenaged dd, and, at my age, eventually it becomes a question of what is going to finish me off. But it sounds as if you're normally a positive and rational person. You will cope and get your balance back.

When are you seeing the second surgeon? I'm glad it sounds as if things are moving quickly for you. There'll be a whirlwind of appointments and each one will take you closer to getting better.

@Lizdeflores

Just to say that I had a large ovarian tumour removed nearly 6 yrs ago. Fortunately, it turned out to be a Borderline which looks like cancer on scans, but isn't. Don't know how old you are, but ov.ca is unusual pre-menopause and Borderlines more common. The blood test is probably a

Ca125. Don't be alarmed if they say it's raised. Mine was 130 - normal around 13 - because of inflammation. Some people have scores up in the thousands.

Does your hospital have a gynaeoncologist? My local one doesn't but referred me to a teaching hospital for surgery. It's important to have a gynaeonc surgeon and I'd push for this, if you can.

@Thymeout. Consultant said I would hear from surgeon in next two weeks. He'll scope me again and then decide what surgery is more suitable. I'm hoping for trans anal. Can't believe I've actually said that. 😂. He told me they are 'throwing the kitchen sink at it' due to my age. I'm 47. What makes me cross is that he said it was there years and I recall going to the go years ago with rectal bleeding and was fobbed off as anal fissure which it may have been but she didn't recommend colonoscopy. Maybe I would be in different place now. Two years ago complaining of bad back ache and some bowel issues I was sent for Gynae and then told I had endometriosis so put all symptoms in past two years down to that. In hindsight there were red flags. I just didn't see them. I just hope now there is time to fix this. I've actually surprised myself. Maybe putting my head in the sand a bit but for me that works. At least for now.

How are you doing? I'm sure isolation is very hard especially at this time. I hope that you have people checking in with you. You sound like a very strong person. Wishing you a peaceful Sunday. X

@Lizdeflores I agree with @Thymeout My ca125 was also raised due to endometriosis and ovarian cyst.

Morning all. I'm having a massive wobble this morning and keep going through all the 'what ifs' in my mind. What if they open me up and find it's worse than they thought? What if the anaesthetic goes wrong? I know I'm being totally irrational but I'm scared and weepy today.

Division belies your allowed to feel scared and weepy, its a shit situation Don't give yourself a hard time about having some very natural fears that are very understandable.
Thymeout I haven't been through menopause yet , but I'm 49 so I would imagine it's in my near future! I have crohns disease so my inflammation markers are always quite high. I will referred to a large specialist women s health/ oncology hospital so I would imagine they are specialist but I will bear your advice on mind, Thank you

@gillmoregirl
The scan I had which led to diagnosis should have been done 9 months earlier, as recommended by the radiologist. Long story - it was only because I asked about it that a doctor looked at my notes and discovered it had been overlooked. (Really dire Gyne Dept at local hospital.)But then there might not have been anything to see. It was clear 12 months' earlier for colon. Just a pelvic lymph node that needed a second look. I haven't asked how long the tumour had been there, but I think it must be quite fast-growing because its classification changed between scan and surgery. I think about it sometimes, but my earlier experience with the ovarian tumour taught me not to waste energy thinking about what I couldn't change. In my case, mistakes have sometimes turned out to be to my benefit. I've got a bit fatalistic, but, again, that's easier at my age than yours.

@Lizdeflores - oh good. That sounds promising. My local hospital actually told me it was cancer 'no surgery, just chemo' and when I went to my appointment at the teaching hospital I was expecting to hear about a chemo regime. The first words my lovely surgeon said to me were, 'Well, I think it's benign' and I nearly fell off my chair. My hands were shaking so much I could hardly sign the consent form. From the same scans.

Fortunately, the colo-rectal surgeon at the local hospital is a superstar. I checked his cv. V lucky to have him.

@gillmoregirl

Sorry - thanks for asking. I've had a lovely day. So lucky that my 3 grown-up dcs live within a 30 min drive and my dd is just down the road. She brought me the Sun paper and doughnuts so we had a nice socially-distant chat in the garden, which I've been doing all along as oncologist said it was OK. I've also discovered on-line food shopping. Preferential slot at Waitrose. Takes me ages to fill it in but mouth-watering in anticipation.

@Thymeout That's so good. It's important for us to be able to maintain contact with each other albeit differently. Hopefully we don't get this second surge everyone worried about. The weather has been so good. Just wanted to say thanks for all your support to date. Take care. X