Cancer Support thread 86 - Stay Positive

[LemonDrizzle10]

New thread as other one nearly full.

@FangedFrisbee sorry to hear you are so uncomfortable. I had much less invasive surgery than you as only had one sentinel lymph node removed. The little heart shaped pillow given to me by the nurse was a godsend. It almost became another limb for a few weeks as it was constantly clamped under my armpit! I’d definitely recommend that you try one.

Would definitely recommend the heart shaped pillow - not sure how many I had removed as waiting to find out but the pillow has really helped out.

My saga has continued. I meant to come back on here and thank you all for not being offended at me gate crashing and to hopefully share some positive news but unfortunately that still hasn't happened. I still don't know my biopsy results. Apparently I've been discussed at the complex case mdt and they've agreed a plan so they want me to go in on Thursday to discuss it. I asked to do it by phone for various reasons and they've said no because I may have to sign something. I've told them I most certainly will not. It's not reasonable to give diagnosis, a plan and to sign consent forms in one go. I requested someone call me with the biopsy results ahead of Thursday so I've at least had time to digest them but they're saying it needs to be face to face. For reference, I work in a hospital and I already have some complex health issues, it's not like they're going to be surprising me with anything! If my results had been in on time then I would have already had them before this planning meeting, so it's very frustrating.

As it stands I don't think I'll know anymore before Thursday. It's been such a long process, my first biopsy was 31st January and I basically know very little more than then. Does anyone else think they're being unreasonable or is it just me? I would never do this in my practice because I know people need time to think things through.

@BiopsyWait I was diagnosed, signed consent form for surgery and told about immunotherapy in one appointment. My skin cancer is aggressive so waiting wasn't an option for me. Make the right choice for you xx

I consented to treatment at the same time as being given my plan of treatment. I did already know that it was cancer and I strongly felt that I would take any treatment offered but I appreciate not everyone will feel this way. I got the feeling oncologists like to get thing's moving once a plan is decided on

I got diagnosis, signed the forms at the same time and was in for the op 7 days later. I was most anxious waiting for the diagnosis but once I knew what needed to happen I just wanted to get on with it. Appreciate everyone is different, do what works for you.

Mine's thyroid so it's not likely to be straight forward a) in terms of biopsy results and b) in terms of treatment. Generally it's incredibly treatable with a hemi/total thyroidectomy if it is cancer and then radioactive iodine treatment if it's spread. There's only one variant which is considered stage 4 at diagnosis because it's so aggressive and there's not much they can offer except for palliative treatment for that (I won't have this, it grows incredibly fast to the point where your breathing is inhibited within weeks).

There's a tendency to encourage people with suspicious nodules to have a preemptive hemi/total thyroidectomy because the biopsy success rates aren't great but also because they can develop into cancer. Because I've got nodules on both sides, but only one side has been biopsied, they've already said I'm looking at a potential total thyroidectomy. I don't think this is an option I want to go for unless it is completely warranted, I think I'd prefer to be monitored (if biopsy is inconclusive or showing initial changes). Your thyroid plays a major part in the endocrine system so I'd rather hold onto it if I can. And if it then did develop into cancer of course I would have it out. If the biopsy does show cancer on the one side that has been biopsied, they can have it! But I'm not losing both sides on a whim. Why on earth they didn't biopsy the other one on discovery I don't know. She had a needle in my neck anyway, I'd have been quite happy if she'd told me what she'd found and asked if she could do the other side while she's at it.

Sorry, that's a lot of words to say that thyroid cancer is very treatable and not (usually) life threatening but the diagnosis is a little tricky and there are other options than just whipping it out straight away. If it were any other form of cancer I'd likely be of the mindset of 'sign me up to any treatment' but this one isn't as straight forward.

Question to all the breast cancer ladies.. I've woken up to a red, slightly warm breast, on my breast cancer side, this morning. I had a lumpectomy in August 2020 followed by chemo and rads. IDC, grade 2 stage 3 thanks to lymph node spread

Has anyone here who has IDC gone on to either have cellulitis of the breast (I'm guessing that's what this could be ...), or (deep breath) inflammatory breast cancer? From what I'm reading they are very similar in symptoms, so I can't decide if I should see my GP on Monday for an infection, or call my breast surgeon to check this out. I don't have a fever, but I'm feeling flu-ish with a cough anyway, which I think started before the skin situation. Not sure if related.

Also I'm totally freaking out, so would welcome any words of wisdom.

Kentish I would give your breast nurses a call, as you feel unwell would veer towards infection but I am no expert and safest to get checked.

Had a locel reunion dinner at university tonight and took DH, he was very sweet and asked me to marry him again twice. 😂Floof the 8kgs and counting Maine Coon was on top of me with his huge tail in my face on waking this morning, very cute but like death by fluff but a nice way to go. Holiday Inn tomorrow night and swimming again then DS on Monday and have him home pretty much permanently now.

@KentishMama have you got a number for the chemo hotline? Maybe give them a call?

Does anyone have experience with caelyx does it make you very cold? Or would you be very cold if your iron and magnesium were low. I just can't get warm( I don't have a temp my hands feel like lumps of dead flesh)

@KentishMama I think your assumption of worst case scenario is the way that we would all leap, but with your sensible head on, you know that it could well be something pretty innocuous.

Having said that, I would call the breast clinic first thing tomorrow, and ask to see someone asap, hopefully just to put your mind at ease. I suppose once you've/we've been through this, the fear never truly goes away.

Hope you're worrying about nothing!

I think you're all right, my head is just racing ahead. I'm calling my surgeon's secretary tomorrow to see if she can either arrange for someone to see me when I'm in for my Zoledronic Acid in ten days' time... Or if she wants to bring my next check forward.

I'll keep an eye on it today anyway.

Grrrr. Damn cancer. It is such a headfuck. Pardon my French.

@Lisdeflores low iron and magnesium can do that - my mum was constantly freezing when she had very low iron!

@KentishMama ahh that makes sense thankyou

Hi have been reading and hope I can join! Diagnosed with a thymoma cancer August 22, missed in a previous scan in 2021 (was being investigated for Long Covid). I was told they are normally contained and don’t grow quickly but after surgery was told it was a B2 stage 3 and had spread to lung lining, removed by robotic surgery but with tiny margins. Having three monthly scans for that. I have rheumatoid arthritis and apparently thymomas are associated with autoimmune but there’s limited research as it’s a rare cancer.

Just before surgery I noticed breast dimpling, had annual mammograms anyway because of family history, had a mammogram done and got call back day of thymoma surgery. Biopsy confirmed invasive lobular breast cancer and I had a lumpectomy six weeks after thymoma surgery (that had to heal first), no lymph node involvement. Turns out I have the CHEK2 gene mutation.

Had concurrent post surgery radiotherapy from mid December for each cancer and now I’m on Anastrozole. Also have post covid hypertension so on meds for that. Back early May for checks etc on breast, there’s a query on my other lung but looks like radiotherapy scarring because of thymoma treatment.

Sorry this is long, the two cancers are both unrelated and I’m wondering if there’s anyone else out there who has had similar?

Also, I mostly just get on with it (broke my leg badly getting out of the bath after lumpectomy and had to have a load of metalwork put in my leg three days later!), but I’ve ended up copied in emails from one consultant to another (I’m in Ireland, though from England), have seen the words tragic and unfavourable histology mentioned and seriously thinking should I retire early (I’m 55).

I’ve three kids, two in Uni in the UK and a teen at school here. It’s our own business and full of stress. I’m finding that now I’m in this window post treatment, even though I’m shattered all the time, my hair is falling out (could be Anastrozole but getting tsh checked), it’s business as usual at home and work. I worked throughout when I could (remote working). The thymoma is the least predictable of my two cancers.

Thank you for reading, if you could get through all that! Would appreciate some company and welcome supporting everyone on this thread.

Hi Mad2c, just wanted to say hi & welcome. You poor thing - sounds like you really have been through it!

This whole experience has made me realise the importance of living in the here & now - I never really did that before - I was always preoccupied thinking about some future eventuality!

None of us know what’s coming down the track so if you can retire now & do stuff you enjoy I would say go for it! Good luck with your decision & even if you don’t retire yet you should definitely think about having done down time after all you’ve been through!! 🤗

Hi, I haven't been on here for a long while. I had her2 triple negative breast cancer diagnosed last August. 12 weeks of weekly chemo, a mastectomy after a two week break, and then six weeks after that, I had open heart surgery to remove a tumour from my heart. I'm nine weeks on from there.
I've found a very hard pea sized lump near my mastectomy site. It's likely to be scar tissue isn't it? Has anyone else experienced anything similar please? Going to ring the breast care nurses in the morning. ( For the record I'm starting radiotherapy on the 27th)

Hi @Mad2c I worked all through chemo because I have my own business and I am single so no other money coming into the house. I look back and really wish I’d been able to take some time off, or that I could take some time off now, but it’s difficult when it’s your own business it’s not just taking a few weeks off, you might lose the whole thing. You do definitely want to reduce stress, so if you feel there’s no way to do this with your business as it is and can afford to retire It is definitely an option. I also had two cancers, not clearly related, but they were both gynaecological, ovarian and endometrial, so I reckon they’re probably is some link in there somewhere.

Hello @Mad2c and welcome - what a lot you've been through. I'm younger than you but have also been thinking about how to approach work over the next few years. I only have BC, but with a lot of positive nodes and a large aggressive tumour so feel like it's sensible to anticipate recurrence. My DH has early onset Parkinson's as well, so I feel a massive compulsion to make the most of the next few years. I work freelance but with a group of associates, and love my work and my colleagues (I realise I'm very lucky). What I would ideally like is for us both to keep working but to work less, maybe 3-4 days a week. Obviously that's much harder if you run a business, but is there anyway that might be an option for you?

@Chocolateismyfavourite - very sorry to hear you are also in the 'two cancers' club with the heart tumour. No idea on the lump, but hope you get reassurance soon. (Btw, I'm on a similar timescale to you - diagnosis in August and still don't have a date for RT but hope it might be in the next few weeks).

Thanks @dotty2 - you sound like you have alot on, but looks like you have a good plan in place. Hope you hear about RT soon, they told me I had to have it within six months of the mastectomy, wich is why the heart surgery was so soon after it so I could recovered enough in time for RT. Yes they rang me back quite early after I left a message, going in tomorrow to get it looked at.

Welcome @Mad2c and sorry to hear your tale of woe. I dislocated my ankle during treatment for cancer no 1 but it mended beautifully I’m glad to say. It still took me a full year to get fit again and then I got cancer no 2. I couldn’t have coped with working but luckily I reached retirement age and could stop work. Go if you are ablue, and concentrate on getting yourself as fit as you can. Life is too short to put things off!

@Chocolateismyfavourite nice to see you, but definitely get the pea checked out. TNBC is the one that recurs early if it’s going to so don’t leave it.

I am back from a glorious weekend cycling in Brittany. I ache all over and am exhausted but I managed about 120 miles on the tandem with DH and ate seafood, drank cocktails and had a splendid time in the sunshine. Sadly my month off treatment is almost up and I must psych myself up for starting the next drug Capecitabine but I feel a whole lot better for my mini adventure.

Thanks @TopOfTheCliff sounds like you've had a lovely time away. I'm due to start the same chemo as you on the 19th may after the RT - these are both meant to be preventative. I rang them yesterday and they've got me in today at 11 to get it checked out.

Although feeling a bit silly as it is quite near the scar so I'm thinking/hoping it's scar tissue, it's just the rest of the scar site although very firm, doesn't have any lumps, and my original lump was 5.2cm so this feels very small in comparison.

My heart mastectomy pillow arrived today. Omg the relief is insane! Thank you to everyone who recommended it