Cancer Support Thread #80 Newbies Welcome

[HumphreysCorner]

Welcome everyone old and new. Feel free to post a quick update to help new and old follow.

HC x

Hey I had hoped I wouldn't have to post in the cancer thread ever again. I'm 35 with 3 girls(17,8 and 6) been with my partner for 17 years. I was a nurse but not working due to my cancer and i was due to return back to work in a few months but that plan has now gone to pot.

2018 diagnosed with invasive ductile breast cancer stage 3. Did chemo, mastecomy and lymph node removal,more chemo and finally radiation. I wasn't able to have reconstruction done due to my weight and the heart failure that resulted from the chemo.

Then in May I thought I had a blood clot as I was short of breath and mild chest pain. Eventually went to a&e where they xrayd and did a ct which showed shadows and fluid in my left lung. I was admitted and the following day the team did a plural tap and removed fluid for testing but they suspected mets.

Diagnosed with breast cancer mets to plural lining of Left lung. Er/pr negative Her2 negative which is the exact same as the breast cancer.

Still waiting a start date for the chemo. Still waiting for an echo to see how my heart is as due to the pandemic my 6monthly echos haven't happened so I'm praying that my heart is strong.

When I saw my oncologist she requested another chest xray due to my worsening shortness of breath(stopping every 15 steps to catch my breath) and my lung lining was full so admitted again. They drained 1800mls from my lung and put a powder in to try to stop it from filling up again and I felt great and came home Saturday 5th June. Felt worse over the next day or so. Phoned my named Met nurse who said I need to learn to live with the breathlessness and booked me into see her in a week time.

Rang the Mets nurse this morning to say I'm worse and I got her collegue instead who requested I come in. Long day of investigations and the fluid is back. Tomorrow the respiratory team are fitting me with an indwelling catheter so that I can drain my lung myself at home.

Hopefully the fluid will stop building up once the chemo starts. I just need a bloody date to start the chemo.

@Pandoraslastchance that sounds very frustrating. Why is there such a delay in getting chemo started for you? Surely they are doing echos now.

Thanks @Acinonyx2. I'm probably just being a fraud and will come in on Monday afternoon to say that it's nothing. But then I read these threads and see that plenty of women younger than me didn't get told it was nothing :/

Lougle, apparently they are working through the back log but I've missed 3 echos so they haven't reached my missed ones yet. It's just baffling and my mets nurse doesn't seem to be very proactive.

Bloody hell @Pandoraslastchance that sounds rough. Fluid in the lungs and breathlessness is no fun. Hope they can sort your echo out soon so you can start chem

@lougle it might be nothing and it might not be. Keeping fingers crossed for you that it is nothing x

Welcome to new and returning people.
@lougle if you get a diagnosis of cancer you rapidly become an expert in your own type and it's treatment.
@backformore don't be too worried about the cording. I had some and did the stretches and massaged it and it went away without any more intervention. It's so weird and little understood!
@OrdinaryLife I totally understand your frustration and thinking you could put cancer behind you and get your life back and then getting slammed in the face again. I am just getting over the shock of the lymph node biopsy last week that threw me off track.
@Acinonyx2 it sounds like all our good intentions have been falling by the wayside recently. I have stalled a bit on the exercising and weight loss but having to live with an 87 year old half the week drinking tea and eating biscuits is not helping. DB has allocated me the job of putting together my DFs obituary as he was eminent in his field and I am reading it out at the funeral and sending it to various professional bodies. I posted off three years of DFs tax returns today too. It's all been very lovely here and DM has been great company but I would like my own life back please! Without all the hard things in it.
On the plus side: I won a premium bond today
On the minus side: I got a speeding fine
Life sucks at the moment. I am a bit angry with the local Macmillan Centre as its been closed for over a year and there is bugger all support for us locally but they are still fundraising away "to fund our work supporting cancer patients". I think if I had any counselling from them I might have an inappropriate rant! Better to talk to my plants.
Best wishes to all. Hope the wait for results is bearable
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@MrsPnut I had local for my port fitting - they gave me some sedation to chill me out but I was chatting with the nurse and surgeon pretty much throughout. The surgery itself was fine, but I was sore for a good couple of weeks after.

@barkydog Welcome! Totally know what you mean about all the initial appointments - it’s the worst bit. Hang in there. Getting a treatment plan will help you feel more in control and you will get back to a sense of normal eventually!

@Acinonyx2 Yes, I had t realized until now that surgery really isnt the end of it - there’s still the waiting and always the chance of more treatment! Ugh.

@TopOfTheCliff Thanks for the reassure re cording. I’ve read that it should go away on its own, so thankfully now at bad as lymphedema, etc. Just feels horrid! I can barely bring myself to touch it. The sticky-peely sensation is driving me mad, but hopefully time will heal...

Ah @Acinonyx2 I am so glad I am not the only one struggling with fasting. Like you, it's not the fasting itself but more arranging it around family life, which is why half term has impacted so much. I am trying to be kind to myself and not worry too much but I just hate being so big.

The radiotherapy for me has been a breeze. I know it's not like this for everyone though, so I feel v lucky. The planning meeting took about an hour and they just marked me up with lots of pen. The tattoos were stingy for a fraction of a second. The sessions themselves are really relaxing - I just lie there and deep breathe while it whirrs around me! I do suspect your glue allergy might stall you a bit more though - they have been super, super careful about any redness or spots on my skin, and your allergy sounds considerably more than that. Sending you lots of positive thoughts and good luck that it clears up and you can start. x

@Pandoraslastchance that does sound very tough and I hope they get chemo sorted asap.

@TopOfTheCliff I recall it taking 6 months to clear the paperwork after my mother died. I was OK at first but sank a few weeks in. I haven't personally found Macmilan/Maggies much help on the counselling from hence going private. Need to stop that while finances recover though so might try Maggies again maybe - or just continue to whine elsewhere - like here! Join in!

@ I guess the primary aim is just not to put more weight on but I would like to flatten this tummy (which realistically will require more than dieting!).

I have been playing with a way of dealing with uncertainty in my prognosis (which seems to get worse with each test result) going forward.

You can compare life going forward to starting a business. Even though the business might fail (and in fact most do) you must nevertheless give it 100% in order to succeed. You can have a small bit of 'what if' back-up planning but most of your time and energy much be focussed on making the business succeed.

Of course there may come a point where the business just flat out fails - and we can have various analogies about when to call it a day or not etc - I leave that to each to figure out for themselves.

Being a natural pessimist, I find this helpful. Perhaps I've been watching too much Dragon's Den.....

@AlbertCampion your name got lost above!

Respiratory team have just fitted the indwelling catheter and drained 1000mls. So off for chest xray and then home. At least with this I can drain it when it needs rather than hanging round the hospital for hours.

@backformore Thank you . You're right I think/hope things will be easier to deal with when I know what I have to deal with and there's a plan. Waiting is just the worst thing. At the moment I'm just a bit miffed that I can't get out and about to enjoy the good weather as I'm now isolating for a week pre operation.

@Lougle I know what you mean about swinging between 'it might be something' and 'it'll be nothing'. I felt the same when I had the letter recalling me after my routine mammogram and I was waiting for my appointment. Fingers crossed that it works out ok for you.

@Pandoraslastchance it is hard to know what to say to comfort you. As a doctor myself I think it is sometimes a curse to know too much. I guess you have the skills to manage the chest drain but you must be raging about the unfairness of it all. You know here you can rant and complain among friends.
How is DD1 taking it? I guess the younger ones just take their cue from you and go along with things.
Thinking of you and sending best wishes
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Hi first time posting, wish I wasn't to be honest. I have bladder cancer which has masticated is that the right term. Multidisciplinary meeting was yesterday so told that I will be on palliative chemo. We are seeing the oncologist on Friday. I have no idea what ask.

I don't understand how I can go from running 3times a week with no symptoms to this since January.

.

User1471424310
I'm glad you have found your way to this thread you will find comfort and a virtual hand hold while you navigate through the maze which is cancer.
A cancer diagnosis does come out of the blue and it's shit. I think sitting in my oncologist office was like having a bomb detonated in my life.
Having a supportive group of on line friends who are here during the good times,the bad times,ready to sympathise,give advice , raise a smile or a laugh has really helped me and I hope it will you.

I haven't introduced myself on this thread, I'm 50 and was diagnosed with stage 4 ovarian cancer in June last year.I have had chemo carboplatin and paclitaxel , a full hysterectomy last October, I'm on Bevacizumab until December for maintenance.
I agree with you Bridget these threads do come around quickly (I can't quite believe it's been a year for me) I was wondering if we should have party when we reach thread 100!

Thanks Liz
I had an ovarian cancer scare back in 2012 my ca125 were high, turned out to be stage 4 endometriosis, I honestly thought that was me.

The urology team are now saying manage and control and the oncologist will discuss how that will work. I'm now discussing with my husband my will and my funeral.

I fluctuate between being bright and breezy and floods of tears.

@user1471424310 I understand the confusion, at my own breast clinic appointment when the doctor told me it was likely to be cancer I kept asking how? Then a few weeks later they told me no surgery as it had metastasized in my pelvis and lumbar spine. Ive been on treatment since and keeping the mental boat afloat can be a full time job some days.

At your meeting I would ask questions about: type of cancer, where exactly its metastasized to, expectations of chemo rounds (how much, how frequent, type of chemo, typical side effects), how you will be monitored. Also ask about potential for immunotherapy or clinical trials and if/when those could be an option. Finally, ask about mental health support options - if you are in a large enough hospital there may be a Maggies or other charity nearby with services. Some ladies do ask for antidepressants, so if you think you may need them to cope, you may want to ask directly or get an appointment with your GP.

Oh, one last point - make sure you are clear on lines of communication - is there a support nurse when you have questions and how can you contact that person most easily.

The first few weeks are an absolute mess and are very confusing and scary, especially if you have been healthy otherwise and never had to interact with a medical setting or a serious health concern. Its ok, its natural, and its ok to be afraid and upset. Dont feel like you need to put on a brave face in front of the medical team, and don't be afraid to ask questions for clarification.

@HerbalRefreshment. Thanks for the advice its really appreciated. Its all very confusing. Have you tried macmillan if so how did you find them. I'm a bit lost. Luckily I'm fit enough to keep working at the moment and I work from home so that takes my mind off things.

I will probably post and run 'til I can talk about this . I was diagnosed Yesterday . I may have had symptoms for a while .

I had what I thought was a nasal polyp removed from my nose earlier this year - I had to go private and ask my parents for help, because I was getting desperate and I couldn't breathe properly - and it turned out to be an osteosarcoma. It was a big bugger as well, went all the way into my throat. Thankfully it was low-grade, and they caught it before it could get nasty, but finding out that I'd had cancer was a shock and I burst into tears when the ENT surgeon told me. I've got to go back in for more preventive surgery - thankfully, he's taken me on as an NHS patient so I won't have to pay out the nose (no pun intended) this time - and I've got an appointment at the local cancer hospital next week. I MIGHT be having radiotherapy as well. I remember Dad had it and it was pretty nasty, but that was in the '90s and things have moved on since then.

I wonder if it runs in Dad's side of the family. He died of a brain tumour and he also had bowel cancer (which is hereditary in our family apparently), my paternal grandad also died of a brain tumour, my brother had Hodgkin's lymphoma and my auntie, my dad's sister, had skin cancer. She's ginger, so she burns easily, though luckily both she and my brother are still here.

Hi all. Does anyone know about regional/hospital variations in available treatments? Are some hospitals able to offer cancer treatments that others don’t?
The reason I ask is that I currently just happen to be being treated at a well known hospital for cancer research and care. Looking to the future, even as far as retirement, should I be factoring hospitals into my decisions about where to live?
I’ve decided that even if/when I recover from my breast cancer, I will probably treat it as a potential life long condition because of the chance of recurrence, so I’d like to know that wherever I am, I have a chance if good treatment.

Welcome @KevinTheGoat @newdiagnosis @Timmythetumourgotne @Pandoraslastchance @barkydog Sorry you find yourselves here.

I’ve arranged my port fitting for Tuesday afternoon and DH will be around for driving duties. Which is one less thing to worry about.

Sorry to see so many new names here - but welcome all.

@KevinTheGoat as many as 1 in 3 or even 1 in 2 people will get cancer at some point so everyone tends to have a number of relatives with cancer - so unless it's the same kind of cancer - hard to say if there is any connection. 3 of my cousins died around my age but from different cancers - coincidence or not? No-one knows! Glad you're back with the NHS properly.

@Lunificent hospitals do vary and I will definitely be taking this into account and treating this as a chronic condition if we decide to move (I'm also at a relatively top place). A lot of people come from other hospitals to mine for treatment - I wouldn't want to have to do that - I wouldn't want to have to travel further (already 20-30 mins drive).

Thankyou for the welcome all . Still can't really talk yet . Don't have much information. x

Hello, just popping on to ask about post-mastectomy pain. I didn't have much pain afterwards but now 3 weeks later I'm getting awful pain where I had my lymph nodes removed, cording and horrible shooting pains in my reconstructed breast which I assume must be nerve pain. I naively didn't think the pain would get worse with time! Just wondering if this is normal.

Also struggling to know if I'm pushing it too much with the physio exercises as they cause pain in the incision area but also want to address the cording/under arm pain and scar tissue.

Also wondering how much time people generally take off work? I don't feel too bad physically but mentally I can't concentrate on a thing and feel really tired, but feel a bit of a fraud for not being back to work for at least another 2 weeks. I know it's stupid to feel guilty about being off work when I've had cancer and recovering from major surgery, I wish I didn't!

Also still have a lot of bloating after the surgery, look like I've swallowed a football! Might be due to the antibiotics so am taking probiotics/kefir and eating well but nothing seems to be helping.