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

@Acinonyx2 Yes, my heart sank a bit hearing that it’s technically a chemo drug- but the fact that it’s targeted to HER2 makes me hopeful. My oncologist was happy for me to stick with the Herceptin but said on balance why not try the Kadcyla and see how it goes… so, here I am!

Hope the next few days are easy going for you, and keep us posted!

@backformore when I realised I would need 14 more rounds of chemo that was a really low point and I was miserable about it. But I read a lot about the drug and it should be a lot milder. About a quarter of patients don't complete 14 cycles but that's due to blood tests (e.g. liver function) rather than actually feeling ill. I also read the Katherine trial paper that led to it being approved for patients like us - the increase in 5 year survival is impressive (cuts mortality from 23 to 13%) and that did persuade me.

I was actually dithering about messaging you about it as I was concerned that your onc hadn't mentioned it .

Hello everyone ❤

On Monday I'm starting radiotherapy on weekdays and chemotherapy (Cisplatin) once a week.

I'm worried about having the right rectum/bladder status for radiotherapy every day, especially the day(s) following chemotherapy.

I don't really know anything about what to expect.

I'm also worried about not having enough energy to live my life (apart from all the things that are already not allowed because of illness or COVID) during or immediately after treatment. I moved to a new country during the pandemic and it has been difficult to make friends. The bit of life I have created during the lockdowns etc. of work, going for bike rides and runs, visiting galleries and museums now they're finally open, are dear to me. Sorry if that sounds incredibly self-absorbed.

@Acinonyx2 I don’t think I’d really registered the Kadcyla as a chemo drug - I’d just assumed I’d stay on the Herceptin, and my onc today basically sold the Kadcyla to me as Herceptin on steroids, or with a big boost to it. She said the main side effect she’s seen is neuropathy, which I’m fine with - as long as I’m not being sick or losing my hair again or in pain or needing Lapelga shots, it’s in a very different treatment bracket as far as I’m concerned. And if I don’t like it, she’s said we can easily go back to the Herceptin. Apparently the Kadcyla can reduce recurrence by 50% though she said in my case it was probably less because I was only just non-complete path response… so, definitely worth a go but not make or break. How had you fared with the Herceptin in terms of side effects?

Found a lump just over 2 weeks ago. My GP was brilliant and referred me to our local hospital and the breast clinic there.

Went yesterday. Mammogram and scan then biopsy as they didn't like the look of it.

Breast nurse said they think because of how it looks it could be cancerous. Results back in 2 weeks.

Nothing in my arm pit so lymph nodes are clear. No history of breast cancer in my family or any female cancers (my dad had prostate cancer but is well and still riding his bike at 79)

I'm 52, hysterectomy 4 years ago and have been on HRT - that's obviously off the cards now. I have 2 lovely boys 21 and 18.

I cried all the way home. I'm so scared. I know recovery/treatments are good for breast cancer. I've not googled or read anything online as I know it will make it worse.

Spent the evening watching Notting Hill with my lovely DP and trying to be positive. Just got to wait.

Not going into work today (I'm a primary teacher) I never have time off. Totally feel like I'm in a dream!

You ladies are amazing

@BG2015 Welcome, I’m sorry you find yourself here but pull up a chair and we will wait with you.

@Acinonyx2 glad your new chemo went well.

I start a 26 week strength training programme today, run by a women’s powerlifting gym. It’s a special cancer programme with 4 women and an instructor. I couldn’t do the safefit trial because I am a private patient and you had to be receiving NHS care to access.
I’m quite looking forward to it.

@JeanneFrench Hi again, having your bladder at the right level takes a bit of skill but you usually have about 300ml of water half an hour before radiotherapy and that is sufficient. If it isn’t full enough they send you back to the waiting room to drink a bit more.

I was fine during my treatment, tired by the end but I was still able to enjoy life. @BadEyeBri had the same treatment a few months ago as well so might have some more wisdom to impart.

Thanks for welcoming me.

Just read the whole thread whilst eating my porridge.

Cancer vocabulary is like a new language.

Can someone please explain:
Lumpectomy
Node biopsy
Negative cancer
ER positive
HER negative

I'm steering clear of Google. You're the experts.

Lumpectomy is where the tumour lump is removed.
Node biopsy is where a selection of lymph nodes are removed to be examined by pathology to determine their cancer status.
There are 3 cancer markers, Oestrogen, Progesterone and Human Growth Factor 2. These are abbreviated to ER, PR and HER2. Someone with triple negative breast cancer has none of these markers. Someone with triple positive breast cancer has all three. ER and PR are usually given a score out of 8 if they are present.

@MrsPnut

Lumpectomy is where the tumour lump is removed. Node biopsy is where a selection of lymph nodes are removed to be examined by pathology to determine their cancer status. There are 3 cancer markers, Oestrogen, Progesterone and Human Growth Factor 2. These are abbreviated to ER, PR and HER2. Someone with triple negative breast cancer has none of these markers. Someone with triple positive breast cancer has all three. ER and PR are usually given a score out of 8 if they are present.

Thank you so much for explaining those!

That's why the breast cancer nurse said they would be testing from the biopsy to see what the cells responded to. And the treatment I have (if it is cancer) is linked to that.

I've been taking HRT (Premarin) for nearly 4 years. The consultant said often HRT will feed the cancer. Can't believe I may have actually been making whatever was there worse.

@backformore so far I have some neuropathy fingers and toes and feel slightly sick and off - but still planning on shopping and working - it's VERY mild compared to full on chemo. I think it comes on immediately though because they don't give any premeds with this one (because effects are milder).

@JeanneFrench totally understand your concerns about living your life. You might find you have to schedule more carefully if you have worse days and better days - that's what I found but was very keen to keep up my walks and so on.

@BG2015 it is a whole language - it seems odd irl when people haven't a clue!

@MrsPnut that sounds good. Safefit have got overloaded and I am still waiting to start - they are asking for yet more medical info from me which I'm not sure anyone can give them But I have my own programme of sorts.

I'm still anxious about glue-gate wrt upcoming rads. I'm still staining red/brown from an area on that side. Rads due to start in 10 days and I'm worried it won't be healed and either it will be delayed even more or they'll do it and it will be terrible.

When you started rads (anyone) over surgery scars were they absolutely 100% healed - anyone have a delay or?

Morning all. I am posting from the toilet where I am enthroned after drinking my delicious bowel prep. Orange flavour with a hint of chocolate I would say. Today is the day of the bonus colonoscopy, my reward for completing the whole breast cancer triathlon without missing a treatment. I am going into hospital at 2pm after 24 hours without food which my family know is a very dangerous idea!

Welcome @BG2015 to the thread nobody wants to join. You are still in the early state of shock and it takes a while to get your head round things. The Breast Cancer Now site is a very useful one and they have excellent leaflets and run good courses as you go through.
I remember last June when I was diagnosed I went out and weeded my allotment from top to bottom and picked all the gooseberries and blackcurrants. My tumour was the size of a gooseberry and so was the lymph node. I am happy to say they are long gone after chemotherapy surgery and radiation. I am still on Herceptin and I think it is nicely suppressing my appetite and helping me to lose weight which is much needed.I get dose 13/18 on Saturday.
I shall try to go back to bed now as I didn't sleep much. This process makes me gratefulI had breast cancer strangely. No messy procedures involving bodily fluids thankfully.

@Acinonyx2 my Radiotherapy planning CT was delayed a week because of my swollen and discharging axillary wound but they still started treatment on time. They have a target date to hit I think. It stopped leaking just in time.

Regards to all, I just wish I could leave the bathroom long enough to enjoy the sunny weather!

@JeanneFrench I was BadeyeBri as mentioned by MrsPnut I finished my chemorads in May. The first 3 weeks were fine. The last 2 weeks were more of a struggle.
I found the cisplatin ok. Very few side effects except nausea which was well controlled by meds.
The radiotherapy made me very, very tired and by week 4 I had some skin changes which made peeing sore. The radiotherapy nurses were very helpful with this.
By the last week of treatment the bladder prep fir radiotherapy became a chore. I was drained, no energy left and trying to get the correct amount of water in became a struggle. The radiotherapists were really understanding and kind. I never felt any pressure or judgement from them, only support.
I'd say take every day as it comes. If you feel tired then rest, if you feel up to going out then go out.
I'm happy for you to DM me if you have any questions. I only lurk from time to time now as my active treatment has finished. I started back at work last Saturday which was a huge milestone for me.

waves to everyone else, wishing you all the very best for treatment, Ops, scans and results x

Welcome @BG2015 . I'm a few weeks ahead of you. My lump was found by a routine mammogram that I had at the end of April and I had my lump and 4 lymph nodes removed last Friday. I would definitely recommend trying not to think too far ahead, one step at a time, at least until you've got your biopsy results. Be gentle with yourself there's a lot to get your head round. All this is, of course, easier said than done

@barkydog

Welcome *@BG2015* . I'm a few weeks ahead of you. My lump was found by a routine mammogram that I had at the end of April and I had my lump and 4 lymph nodes removed last Friday. I would definitely recommend trying not to think too far ahead, one step at a time, at least until you've got your biopsy results. Be gentle with yourself there's a lot to get your head round. All this is, of course, easier said than done

Thank you for your kind words. I'm an emotional wreck. I've always been the same - it annoys me sometimes and at 52 I wish I could control it better but we are who we are I suppose.

I know the biopsy results could come back and be clear but the impression I got from the nurse was that that is quite slim. I suppose they know what they're looking at on the mammogram and scan.

I'm not going to tell my 2 boys until I know for sure. I just hope I can hold it together until then.

How is your recovery going? Will you need further treatment?

Hello all, hope you don’t mind if I join you.

I started chemotherapy and targeted therapy last week for Stage 2B (the Drs think at the moment), triple positive, breast cancer, and will have surgery and then further treatment in a few months. It took a few months from diagnosis to treatment starting, so it is a relief to get going with it.

I’m doing my best to find some positives in the situation. I’m lucky to be at a point in my life where I have no caring responsibilities, I have a fab husband to help look after me, and my work are being supportive, so I’m feeling very fortunate, all things considered.

Sending my very best wishes to everyone on this thread.

Thanks, everyone.

As well as having the bladder full, how did everyone make sure they had just had a big poo right before each radiotherapy session? (Especially on day of/after chemotherapy). My sessions are at all different times and at work I can't always get to the toilet (or eat) when I want. Any tips?

Hope everyone is having a great day.

Anyone who is interested in the Seachange Retreat - I'm on their mailing list now and they have had 2 spaces come up for the weekend of July 3/4.

@JeanneFrench I didn't have to do bowel prep but I think there's the option of an enema if you do

Thanks for the well-wishes for my stem cell harvest. I went in on Monday and, aside from having the femoral line fitted  it wasn't uncomfortable. They sent me home with the line in in case I needed to do a second bout on Tuesday, but luckily my Monday haul was sufficient so I got yesterday off and spent it enjoying the garden and the beach.

Back in today for more inpatient chemo - annoyingly I'm feeling completely well and almost back to full power for the first time in months, but at least this might mean the chemo doesn't absolutely floor me like last time.

@BG2015
It is emotionally very tough which is why I've chosen not to tell many people. I just can't face it. I've only told my daughters, my brother and one close friend. My husband was with me at the results appointment. I'll probably tell more people when my post op treatment plan is confirmed. My tumour is very oestrogen and progesterone positive (scored 8) but herceptin negative so I'll need radiotherapy and hormone suppressing medication. If the lymph nodes that were removed show any trace of cancer cells I'll probably need chemo as well. Lymph nodes looked clear on the ultrasound so fingers crossed on that one.
I'm recovering well from the operation. I feel much better than I thought I would and there's been very little pain and my shoulder isn't particularly stiff.There are minor inconveniences like the dressings have to kept dry so no showers, just flannel washes at the moment. A silly one is that I've had a lot of trouble removing the pen marks that were drawn on me pre op. The surgeon tried to make my post op breast as aesthetically normal as possible so no crater where the lump was removed and she moved my nipple up. This meant a lot of lines were drawn on me in sharpie pen so that everything lined up as well as possible . Purple sharpie is a lot harder to remove than black!
The waiting for results is hard but it is a bit easier when you know what you're dealing with.

@Awfuldefending. I think I remember you as you were a couple of weeks ahead of me in your treatment and a very similar diagnosis. Answering your question upthread - I finished two weeks of radiotherapy at the end of May, I had a follow up phone call with the radiotherapist a few days later just to check that everything was OK. My next appointment is already booked in with the consultant (surgeon) for September. I also had a quick phone chat with my GP after I put in the prescription for Letrozole. She suggested I get back to her once everything has settled down post-radiotherapy and we can talk through how I'm doing (I'm also on antidepressants and a couple of other things). I would get back to the breast care nurse and ask when you will next be seen.

Welcome @BG2015. You have had some good advice and would agree with what @barkydog said - when I went back for my second mammogram, the doctor was quite confident about what she was looking at and booked me in to see the consultant without waiting for biopsy results.

Hello to everyone else on this thread. I have been following since late last year and you are all brilliant. For everyone that posts on here I am sure there are dozens of people lurking and also benefitting from the collective experience/wisdom.

Hi all. I have my 4th chemotherapy next Wednesday and a meeting with doctor and blood tests the day before.
I’ve just had a message ping up in my NHS track and trace app saying I’ve been in Contact with someone with covid and need to self isolate for 9 days, so that includes next Tuesday and Wed. I haven’t been contacted by anyone by phone. I had my second vaccine several weeks ago.
Has anyone experienced this? Will I have to delay chemo or will they just test me? Should I inform the hospital? Thanks

@Lunificent what a major pain! I would ring the ward and ask them but expect to be tested and/or delayed.

@Awfuldefending I had radiotherapy in March and hassled them to get the zolendronic acid infusion. I then had a flu like reaction and severe pain in all my bones and joints for ten days so wished I had left it as long as possible. I am fine now just not looking forward to the next one.

I survived the colonoscopy today by having all the drugs offered and gas and air. You have to be quite athletic! I was lying on my side then front then back before they were satisfied. All totally normal! Phew. Now celebrating with a fruit and vegetable feast.

I do so wish I could get away from this relentless assault on my body!
Regards to all
Top

@RocioMartinez yes I was a couple of weeks in front of you. I finished my radiotherapy 15 sessions on 29th April.
I felt as though I sailed through it but I would still like to have a chat with someone. All I was told by the receptionist
that the radiologist will phone in the next 6-8 weeks. Ok it's only week 7. No follow up appointment with the oncologist
or the surgeon. Left another message for the BC nurse today. From the Letrozole I have a few aches and pains the GP
just says contact the nurse if I have any problems. I just feel as though I have been dumped by everyone.

@TopOfTheCliff regarding the Bisphosphonate I was informed that in my area there is a long backlog. Not looking forward to
having this treatment as my hips, lower back and thighs already ache. At the moment I have to lift my right leg up to get going.

What a horrible disease not only does it effect your body but the stress on the mind is frightening.

Good luck everyone with your treatments. We can beat this.