Cancer support thread #76 - newbies welcome!

[Bloodybridget]

Here's the next thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, please look for other threads; there is one in Life-limiting illness for partners - link to latest. This one is for cancer patients ourselves.

[iVampire]

Hi! Popping in to introduce myself on the lovely new thread

I am living with leukaemia (CML) which is well controlled by a targeted inhibitor drug. It’s been 3 years since diagnosis, and the aim is to control not cure. I’m living the hypothesis that a cancer can become an annoying chronic condition. I’m on a 12 week prescribing cycle, and the anxiety about how I’m doing always seems to creep back just before those appointments, even though I try to forget I have cancer between times (so I tend to dip in and out of the thread on that cycle)

I’m also on annual mammogram call back as they found aplasia at the last one.

I’m in my 50s and have teenage DC.

We’ve just moved to tier 2, and started with some rule breaking! One of DD’s close friends was off school for a Covid test yesterday, so she stayed overnight chez another classmate. Yes, we know that’s against a strict interpretation of the rules, but it really did seem by far the safest course given that I’m ECV. We’ll work out what to do about isolation when we’ve heard from the classmate about her test results

[InOtterNews]

Hi all

Coming over from previous thread. Thanks @Bloodybridget for starting this one.

I was diagnosed on 17 March 2020 with stage 4 mantle cell lymphoma. Despite Covid I've been lucky (!) that my treatment started and continued throughout the pandemic.

I had my stem cell transplant on 22 September and I returned from hospital on Monday. It was probably the most traumatic and harrowing thing I can't imagine. Now I'm trying to stay free of infection whilst my cells do their thing. The most I can do at the moment is get dressed.

[Bloodybridget]

I was diagnosed with ovarian cancer in May 2019, stage 2, grade 3 because it was a rare and aggressive tumour, a carcinosarcoma. "Everything out" hysterectomy followed by chemo which finished at the end of October. A scan at the end of July showed a lung nodule which was thought to be malignant and was removed by wedge resection nearly 3 weeks ago. I have follow up appointments with the lung surgeon and with my oncologist this coming week, hoping I won't need more treatment atm.

[merlotbythefire]

Hi everyone.

I tend to skulk about, read all the posts and only post when I’m feeling brave It has been very helpful in learning what to expect from my treatment. It has also been extremely humbling to read what you are all going through or facing and I wish everyone all the best and the most comfortable journey that you can have.

I was diagnosed with HER2+ breast cancer at the beginning of September 2020 and my second cycle of four of FEC chemo is on Monday. After that I’ll move to four cycles of a new cocktail (TPB?) - just in time for Christmas!

My hair is currently coming out in drifts and is driving me up the wall. I’m very lucky in that I had so much hair to start with that I still look ‘normal’ from the outside. All my bald bits are underneath, but I’ve lost probably 2/3rds of it so far. It also looks as if a small animal has taken up residence in the bathroom bin!

I posted a couple of weeks ago about a shadow being seen on my spine from a CT scan. I’m extremely relieved to say that after an MRI and a nuclear medicine scan, my oncologist rang yesterday to tell me that I only have scoliosis and bone degeneration on my P7 vertebrae and so my treatment can continue as planned. I read here a while back that having cancer alters your definition of what ‘good news’ is. I can absolutely agree with that now!

[bontopia]

Hi newbie here, how nice to find this thread although I'm so sorry for what you're all going through.
@merlotbythefire sounds like we're in a similar position, I also have HER2+ breast cancer, diagnosed start of September, I'll have my 3rd EC chemo on Wed, then after the 4th 12 taxane/herceptin ones, every week. Wishing you all the best for your chemo on monday.
My hair's also balding in parts despite cold capping. It still looks passable to me but my tall family tell me I need to wear a hat!

[Bloodybridget]

Welcome to @bontopia. Bad luck to be losing your hair despite cold capping! There are many regulars with breast cancer on these threads, so lots of expert advice and support available!
@merlotbythefire glad to hear the spine shadow isn't too serious, although of course no-one wants scoliosis or bone degeneration! You're so right about redefinitions of "good news"!

[merlotbythefire]

Hi @bontopia, good luck with your chemo on Wednesday. Sorry to hear that your hair is thinning too, even with the cold cap. My 2 DSs (18 & 20) keep helpfully suggesting interim hairstyles for me. I have so far resisted the Billie Eilish flouro roots, the Mohican (various colours) and the Norse head tattoos (to be covered over when it grows back, like a secret code ).

I’ve promised the 18yo that he can shave what is left off when I am perilously close to resembling Gollum. I reckon that will be on about Tuesday at this rate!

[merlotbythefire]

@Bloodybridget I hope your meetings go well next week and that you receive positive news

[TopOfTheCliff]

Thank you @Bloodybridget for the new thread.
@InOtterNews great to hear that you are still at home nurturing those white cells.
@iVampire have you heard the friends Covid test result yet?

I’m another HER2 BC patient going through neoadjuvant chemo and feel like a veteran now as I was diagnosed in June and have just got one THP chemo session left. I had a scary allergic reaction to Doxatacel last time. I’m currently struggling with the bastard filigrastim bone marrow injections which make me feel awful but I’m getting demob happy with the end in sight. I am bald fat and unfit and can’t wait to start some regular exercise again. Next week I have some scans to plan surgery so I am praying the hospital carries on functioning and doesn’t shut down due to Covid.
@bontopia and @merlotbythefire I only had 3 FEC and 3 THP It’s odd how we all get a different regime. My lumps disappeared after two doses so I am hoping to get the all clear this week. I will try not to be disappointed if I haven’t had a complete pathological response. I still get the full pentathlon of treatment but with Kadcycla not Herceptin if the cancer is still there. It’s nothing short of miraculous how good the treatment is here during a pandemic and all free! I feel very lucky

[Zorgothslugofdoom]

Hi everyone, I also have Her+ breast cancer, diagnosed just over a year ago. Had 3 cycles of EC, then 3 cycles docetaxal/herceptin/perjita, followed by reduction mammoplasty plus local node excision, followed by radiotherapy. Currently having herceptin every 3 weeks, which will finish in January.

I agree with others that having cancer makes you reevaluate what constitutes “good news” - I feel very “lucky” to have been diagnosed when I was, as it meant my DH could come with me to my chemo. Sending support and a warm hand hold to anyone having to go by themselves at the moment.

I’m currently being investigated for possible thyroid cancer, as my last CT scan picked up a nodule on my thyroid - really hoping it’s nothing, as I can just about see the end at the light of the tunnel, and don’t want to have to start all over again! Got a scan and biopsy tomorrow, so fingers crossed! I’m also awaiting surgery to “even me up” as I’m currently a g cup on one side and a c cup on the other! I was the last patient to have breast surgery at Wythenshawe before it was moved to the private spire hospital due to coronavirus. I’m not bothered too much about the wait for surgery, but it would be nice to draw a line under this stage of treatment.

I found this thread such a fantastic source of support and knowledge, as you can really open up (and moan!) on here. I found it so helpful, when I often felt I had to keep a brave face on when speaking to family and friends. I’m really glad I found this thread!

[citybumpkin]

Hello All! I'm still reading the thread on/off due to having a very active 18 month old DD and being very tired.

Diagnosed with TNBC (triple negative) at the start of March this year. Age 44. Stage 1 grade 3. Lumpectomy at the end of March. 16 sessions of chemo: 4x AC, 1x carbo, 12x paclitaxel. Cold capped for the AC but then gave up as my hair really thinned and it was too cold. Just about to have radiotherapy. As said, tiredness has really kicked in now along with various aches. Struggling mentally as when radio is completed thats it for me treatment wise.

Oh and I'm based in NL.

[Fuckmyliferightnow]

Hello.
I'm not new to Mumsnet, but new to this thread. Can I join?
2 weeks ago I was diagnosed with ER+ and PR+ breast cancer, still waiting for the HER2 results. I'm hoping I won't need chemotherapy, but am having a lumpectomy and mammoplasty plus lymph node biopsies in 2 weeks. I will def need radiotherapy after surgery.
What's scaring me the most is the thought of taking Tamoxifen, I'm 42 and pre menopausal.
The initial shock is wearing off but I still get moments of realisation which sends me into meltdowns.
I've not been able to think straight or concentrate at all so I've been signed off work for 2 months.
One of the hardest things has been telling my family, they live 70 miles away.
I just feel so alone with it all, especially because I have to isolate from Wednesday.

[Skap]

Hello.
I am 62 and was with HER2+ breast cancer in July 2019. Had surgery first then paclitaxel chemo from October to December. Radiotherapy in January and Herceptin from October to April. It was stopped short because of my underlying health conditions and Covid.
I had my one year mammogram in August which was fine.
I pop into this thread from time to time but am no longer a regular.

@Bloodybridget I will have everything crossed for your path results this week.
@InOtterNews I'm glad you are home and it sounds like your experience was up there at the top of ordeals.

@Fuckmyliferightnow I had surgery first like you though often people get chemo first. The surgery is scary but actually such a relief afterwards to get IT out. I guess you have a date if you are isolating from Wednesday? You might be worried about going in alone and the lack of visitors but actually it will be fine. The day of surgery is a blur of activity and if you stay overnight at least it will be peaceful. This thread was a massive source of support to me through many months and I hope it can be for you.

[Fuckmyliferightnow]

Thanks @Skap .
We're hoping I won't need chemo, keeping everything crossed.
My surgery will be a day case at a private hospital, my friend will pick me up and take me to my brother's for a few days. Then I won't be tempted to do house/mum stuff to start with.

[Acinonyx2]

Hi there. I'm another Her2+ breast & lymph cancer newly diagnosed. Seeing oncologist tomorrow but already told it will be chemo-surgery-chemo to start soon. :( Hoping to get CT scan results tomorrow. Totally dread chemo - it's all the needles. That's my big weakness - which might seem odd as priority worries go at a time like this but I'm a bit obsessed.

[Skap]

@Acinonyx2 you can avoid most of the needles by having a Picc line or port. Ask about it at your pre- chemo appointment.

[Acinonyx2]

I'm sorry to say I'm quite scared of those too Skap! Have you had one?

[Acinonyx2]

Ok so saw the oncologist today and feel a lot calmer. CT was clear apart from some bits and bobs that might have been more interesting but in the current circumstances are not at all interesting. Yes good news does indeed take on a different look.

We discussed my terrible veins and needle phobia so I will get a port put in. This definitely seems like the right move and does help my anxiety a lot as I am a bit obsessed with this aspect.

I will do the docetaxel and herceptin first then the other stuff. Looks a like quite a few people here are very familiar with that regime.

I already had a hair appointment booked about 10 days into chemo so I think I will just tell her to shave it off.

zoro: hope the scan and biopsy went OK today. I know it's a royal PITA waiting for more test results.

fuckmy: sorry to hear you are feeling alone in all this - I think everyone feels this a bit even when people are right next to you. I do think these early stages of tests and not having the final picture are very tough.

[Skap]

Not only does good news take on a different look but fears and phobias pale in the bigger picture. I have no fear of needles but my chemo was weekly rather than 3 weekly so that meant cannulas every week and sometimes more if I had a scan. I had a PICC line which was fine but a port is better - my small local hospital doesn't do ports. Ten days in for a head shave is good timing, I did feel under pressure to cold cap but chose not to, they may not offer it cos covid. I got lots of nice hats (google "chemo hats")

[Acinonyx2]

Skap - yes I know my needle phobia is an odd priority! I already ordered a hat and 2 beenies.

[Lizdeflores]

Hi all just caught up with the new thread thanks @Bloodybridget.
I'm a 50yr old with ovarian cancer I had a total hysterectomy on Friday which went well They are confident that the managed to remove a lot of disease and think any remaining cancer cells will be mopped up by chemo. Hopefully I will be discharged tomorrow. I'll be back and more responsive to others in a few days.

[Trumpton]

Popping back on to say hello .
68 years old . Diagnosed with DCIS in July 2019 after routine mammogram picked up tiny calcification .
Long story short after 2 lumpectomies I still didn’t have clear margin so was due to have mastectomy and Diep reconstruction in November .
Then it was discovered that I was HER2 + so plans changed and I had 12 weeks of Paclitaxel.
I had mastectomy in mid March but they could not do reconstruction due to Covid . I had a skin stretcher implant Inserted that I have never got on with.
So .... there is no sign of a date to do Diep and I have made the decision that I want this all over .
I spoke to breast care nurses in Manchester and here on Isle of Man ( where we are Covid free ) and have decided to have implant taken out as I hate it and have asked to have a bi-lateral mastectomy .
There does not seem to be a problem with that although I will need to see a psychologist.
A single mastectomy would be a problem as I am heavy busted and the prosthesis to match would be too heavy . I was due to have a reduction on my good side anyway to match up.
I feel a huge sense of relief that I will be able to walk away from the fear of reoccurrence and continue to keep my health and fitness .

I wish you all the very best .
This thread was such a huge help to me when I was being given one piece of shit news after another .
I can see light at the end of the tunnel . I finish Herceptin in December .

[iVampire]

@TopOfTheCliff - the friend was negative, thankfully

But it has made me think about how we can live as separately as possibly (total isolation within the house not practical) and how important it is to remember things like opening windows and washing your hands even when you don’t go out. I’ve also got some vet kills-all-germs-but-not-your-pet spray which might be handy as you can use it for both cleaning and fogging (bit not near screens)

I’m going to go and see my Mum (day trip, not staying over this time) and it might be ages before I do again.

Not going to go to see DS at university en route

[TopOfTheCliff]

@iVampire that’s a relief!
I am being cautious. My stepson who lives in London wants to visit and as I know he is a party animal I have said he can’t stay here. His mother can put him up. It’s just too risky when I know how much he loves going out. DH thinks I am mean but I don’t care! He can meet him outside the house.
Scans today were ALL CLEAR so the chemo has worked. Hallelujah!! I still feel awful but it’s in a good cause at least. Day 6 chemo and feeling grim

[Acinonyx2]

Good news about the scan TopOfTheCliff.

It's difficult maintaining some isolation in these times - I have a daughter at school in year 11 which is the weak link there. I'm trying to impress on her the need to be more careful e.g. about washing hands etc.

Trumpton - I'm also heavy chested and can definitely see the sense in a bilateral mastectomy. I had read about needing to see a psychologist first

Now I need to get a dentist appointment within 10 days- that will be a challenge.