Cancer Support thread #78 - Newbies welcome

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

[MrsPnut]

Hello, I am 44 and was diagnosed with vaginal squamous cell cancer grade 2 back in November after a smear test and colposcopy. I was sent for a CT scan afterwards as vaginal cancer is a rare primary to have and it led to a diagnosis of invasive ductal cell cancer in my breast and lymph nodes as well.

It turns out that they are not linked and I am just unlucky to have two together, I am on zoladex and anastrozole for the breast cancer as it is ER and PR + and have finished chemo rads and brachytherapy for the vaginal cancer.

Welcome to regulars and newbies, pull up a comfy chair and drape yourself in a blanket. The drinks cabinet is in the corner for emergency refreshments.

[BadEyeBri]

Hi everyone, I'm 40 stage 2b cervical cancer. I have my first oncologist appointment today. My treatment will be 5 weeks of chemo radiotherapy with cisplatin and then 3 courses of brachytherapy.
I'm struggling to identify with my diagnosis as I feel so well. I'm just trying to keep things as normal as possible.
Thanks for the new thread MrsPnut

[Alittlewornout]

Hi everyone I am 50 and have a rare blood cancer called MDS my type has a high risk of becoming leukaemia. No treatment at present but my only option is a stem cell transplant. Will probably need holding Chemo in the next couple of weeks so will be in hospital for a month then stem cell early summer.
Like others I cant quite believe this is happening as feel quite well, sometimes a little tired from anaemia.
Thanks @MrsPnut for the new thread.

[Anne1958]

Redannie, sometimes the only way to tell if an ovarian cyst is malignant or not is for it to be biopsied.

Does the C125 give a good indication of malignancy or not? Not really. The OC forums I’m on have many members who were lulled into a false sense of well-being after being told there results didn’t indicate OC yet they were then found to have OC after surgery.

It’s what happened to me and I’m told women with low serous OC are more likely to have normal results after a C125.

















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[Lunificent]

Hello all. I would like some advice about how to keep calm/distract myself. I noticed my nipple had inverted a month ago and yesterday had a mammogram and ultrasound. They found a lump and a raised lymph node. They biopsied the node and are doing a biopsy on the lump tomorrow. Results are on the 11th March.
Unless I’m asleep, I’m finding it very difficult to try to calm my mind. If anyone has any advice on how I can live with myself I would be grateful.
Thanks for reading.

[Lizdeflores]

Hi all I was diagnosed with stage 4 ovarian cancer in June 2020. I have had 6 cycles of chemo,a full hysterectomy and I'm having Avastin infusions as maintenance.
I'm 50,(very young to get oc my oncologist informed me as if that would make me feel better about diagnosis!), and I have a 7 year old son. My treatment has been successful and my last scan showed no signs of disease .
Now I try to get on with life while I still can. This week I have decided to try to get my pension released early as I'm unlikely to make it to pension age. That may sound defeatist but it actually has felt quite liberating and to me it has felt like a way of confronting an uncertain future. I obviously do hope that future is as long as possible.

[BadEyeBri]

@Lunificent I'm only very newly diagnosed so I know exactly how you feel. If you want more info stick to NHS/Cancer Research/Macmillan websites. Do not fall into a Google black hole. It's unhelpful and really bad for mental health.

I found that going about my normal, humdrum everyday things really helpful. Keeping busy. I know it sounds trite but it did help. Nights and mornings where the worst. I cried a lot. I'm still crying but much less.
The waiting really is the worst. Post here as much as you need. There's always an ear and a handhold. Talk to someone IRL if you can. Write it down. Don't bottle it up. If you anxiety is stopping you doing everyday stuff speak to your GP.
Take care of yourself. One day at a time.

[TopOfTheCliff]

Hello I am apparently Tigger on this thread. I am a hyperactive 60 year old with ER positive HER2 positive Breast cancer diagnosed last June. I had one stout little lymph node affected so qualified for the Kitchen Sink regime. I’ve had FEC-THP chemotherapy, lumpectomy with lymph node clearance and radiotherapy. I am now on anastrozole for 5 years with Herceptin until October and zolendronic acid bone infusions for 3 years.During chemo I fell and dislocated my ankle and I also have an arthritic hip. As a result I am working hard with a physio and the Macmillan SafeFit trial to regain some mobility and lose the lard I gained.
I am blessed with a sunny disposition and use denial and exercise to keep the gremlins at bay. Yesterday I tried deadlifting!
Today I won £50 on the Premium bonds. How shall I spend it? A fabulous set of resistance bands? Or some alcohol free gin?
Sending warm waves of positivity to all especially those having chemo this week or waiting for scans and results. This is a good place to lurk if you are scared.

[TopOfTheCliff]

@Lunificent welcome to the thread nobody wants to be on. This waiting is the hardest part of the whole process. Once you have a plan you will feel much better. Keeping busy helps a lot. Can you turn out some cupboards or clear a flowerbed or decorate the bathroom? I also used the Calm App for meditation and to help me sleep while waiting. I avoided caffeine and alcohol as they made me feel worse.
Thinking of you. I can’t believe it’s only eight months since I was in your shoes.
Top

[BadEyeBri]

@TopOfTheCliff I have a very funny mental image of Tigger with his wee foot in a cast 😆 thank you 😆

[Lunificent]

Thank you for your replies and advice BadEyeBri and TopOfTheCliff. I was so happy just now to see I’d had some replies. I’m scared to get out of bed but will do and get on with something.
I have my COVID vaccine on Monday. Issa so looking forward to getting that done but now it feels like an inconvenience.

[BadEyeBri]

@Lunificent I had my vaccine yesterday. In and out, quick as can be. My arm feels a bit like a 2 day old bruise. Other than that I'm grand. My consultant advised me to have it before treatment began. Tick it off your list as one less thing to do on the journey

[Lunificent]

Thanks BadEye, I was worried it would interfere somehow.

[Starmer]

Thanks @MrsPnut for starting a new thread, and hello to everyone, old and new.

I was diagnosed with stage 2 bowel cancer last June. I've completed 6 months of chemo, and now have about 6 weeks of shielding left. I had to have a stoma when I underwent my surgery, and so I am waiting to hear when reversal surgery might happen. It may be a while given Covid, but I'm happy enough with my bag, and it's a good excuse to buy more dresses!

I haven't been on much recently as I seem to have got my "mojo" back - happily homeschooling (although equally happily looking forward to this Monday for my three younger children, and the week after for the oldest!), building up on exercise, and trying to resist the biscuit tin. Shifting lockdown weight seems to be an awful lot harder than putting it on. But I feel so much better than I have done for a long while.

Lots of sympathy for everyone struggling with side effects. I can't remember who was having problems with neuropathy, but mine has pretty much reversed, if that gives you any hope. Might even get my violin out again (strings + neuropathy = vile din).

And lots of love for everyone waiting for results and plans. It really really is the hardest bit, I think. I was a tearful mess at the beginning, woke up every day thinking of my "odds" and checking for my stoma. Every single book I read / film I watched seemed to be about people dying of cancer. It gradually wore off, but I think I needed that crying time. And having a plan and getting on with the treatment, one day at a time, gave me something to focus on.

[Lunificent]

Thanks for good advice Starmer.

[Acinonyx2]

@MrsPnut Thanks!

I'm more Eeyore than Tigger. In my 50s, dd15, diagnosed stage 3 breast cancer last Oct now part of a gaggle of us going through chemo and deep into comparing side effects and venous catastrophes - my last cycle of 7 next! Then yet another bloody MRI and a final decision on surgery etc.

@Lunificent Whatever the results are - there will be a plan for you. I am evangelical about walking. There's a study showing that walking 3-5 hours/week can cut the recurrence of breast cancer by 50%. I feel it's the one thing I can actively do myself to help myself so aim for one short + two long walks in the better weeks. It's become a big mental prop. I schedule the walks with friends.

@Starmer fantastic to hear you are through and doing well. I am one of those complaining about neuropathy - I play classical guitar and quite grumpy about this. Really hoping it's not permanent.

@FizzyOrange on the walking vs exhaustion thing. It is hard to know when to push and when to rest (are you listening Tigger?) but I recall reading about the fatigue not always being genuine - as in - it feels real but your body is not genuinely fatigued, physiologically. That said, there is a week when I just move between sofa and bed. After that I must say the walks are getting shorter as fatigue accumulates. But often I don't feel as though it's going to be possible - but it is when I do it. Then I nap But I always feel better for it.

In the first weeks I researched things I could do furiously - I have some relevant background and waded though the research journals to check on information and cross reference it to my cancer and actual treatment. But the results gave me little confidence that I could bank on taking anything being for better rather than worse at this time. Except exercise. So maybe just experiment with baby steps?

[Lunificent]

Acinonyx2 - thank you. I sat in bed till 1, unable to move but have just done a 40 minute walk and feel a bit restored.

[HauntedDishcloth]

I'm 48 with DS9 and DS12, diagnosed with breast cancer just before xmas, apparently contained but quite large, maybe up to 5 separate sites within the breast. I'm half-way through pre-surgery chemo; mostly I'm fatigued, sicky, bored & despondent and come on this thread to moan!

[backformore]

Hi all! I'm 38 with triple-positive (HER2) breast cancer. I have 2 kids, DD8 and DS2. Diagnosis came in early December, and I started chemo right before Christmas. It's been an insane few months but I'm feeling mostly on top of things now that treatment is well underway. 2 chemos left, then surgery (hopefully minor, as my lump can't be felt any more), then radiation, plus Herceptin shots for the rest of the year.

@FizzyOrange, I read the same advice as @Acinonyx2 about exercise. and am also trying to do 30 mins of walking every day - although that goes out the window in treatment weeks! At the moment my sleep is terrible, and I think it's partly because my body isn't getting used enough during the day: at night it's all tight and revved up, and no matter how many stretches I do it's as if my muscles are just too restless and want to move.

@BadEyeBri @Alittlewornout @Lunificent Welcome, and I hope you all have reassuring news and/or a positive plan in place soon! December was a nightmare month for me, with all the scans and waiting and uncertainty. Definitely the worst few weeks of my life (my husband's, too, he says). Amid it all I remember desperately just wanting my "normal" back, and not seeing how it would ever be possible - but even now, in the midst of treatment, I do feel normal a lot of the time. You will get there, I promise.

@Starmer I was another neuropathy person! It's my fingertips that are sensitive - just enough to make typing feel a bi uncomfortable. That, the sore mouth/throat, and upset stomach have been the most annoying side effects of my latest drugs (Docetaxel). Two days of pain wasn't fun, either, but these lingering longer-term effects are almost worse because they chip in to my life in my supposedly "good" weeks, argh! Glad to hear that yours eased off!

[Lunificent]

Thank you Backformore. Looking forward to feeling normal!

[thereisonlyoneofme]

Just seen surgeon re an op for ovarian cancer after being told previously its non operable. Had 12 cycles of chemo, 2 lots of 6, which I found fairly doable. Bit stunned with this new info, and very scared. It all hinges on whether the anaesthetist thinks Im fit enough for the op.

Anyway, be that as it may (never know what that actually means) when you are in hospital do you recommend taking in a tablet
or dvd player ? I have neither but will need something to stop being being bored rigid. (Im not a teckie so something a one year old can use )

[Anne1958]

Theresonlyoneofme, I still think of you and what you said about wanting your old life back. I know exactly what you mean as my marriage broke up after 37 years and I had to start a new life whilst broken hearted even though the separation was what I wanted at the end of a very difficult few years. Seven years later I can honestly say that Ive made a new life but there’s still a part of my heart in the past and there it will always stay.

I know our situations are different and that you’re a widow but I just want to try and encourage you on to a life where you can have joy in your day - I think I could have put that last bit better though.

You asked about going into hospital and I agree that a tablet would come in handy. Don’t worry about not being a techi though as people will help you out if you get stuck.

I’m not in the uk but would you feel ok with telling us where you are just in case someone on the thread could phone you or maybe even do some shopping for you if you’d be ok with that.

[BadEyeBri]

@thereisonlyoneofme kindle fire and iPad mini are both easy to use. I'm a total Luddite and manage them. You can use them both as e readers too. I'll have my fingers crossed for you and the surgical consult

[FizzyOrange]

@MrsPnut thank you for the new thread

I am in my mid fifties with an adult DD25 and was diagnosed last December with advanced high grade serous OC and have had 3 cycles of chemo so far. I am waiting to see if my most recent CT scan shows I am suitable for surgery yet. I am hoping I am just to get it out of the way but I am really frightened.

@Lunificent I don't have any more advice about keeping calm in the run-up to results but please be assured that once you know what you're dealing with, you will feel loads better. I was a basket case when I was at the stage you are but now I am being treated it is a little easier. Much better to have your Covid vaccine done now - if you need to go for further tests or chemo and are having a lot of hospital visits, you will feel better to have got it out of the way.

@Acinonyx2 and @backformore, that is interesting to hear, thank you both. I might have to force myself to have a little walk now, who knows, I might feel a bit more energetic!

[FizzyOrange]

@Lizdeflores my oncologist also told me that I was young to get OC and I inferred that he was hoping that would make me feel better about my diagnosis!