Cancer support thread 91 - don’t borrow tomorrow’s worries

[LemonDrizzle10]

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Another MRI hater here, especially down facing boobs and face in tupperware boxes, although am sure I'd be the same whatever direction. I feel like a Greg's sausage roll, all bound up.
Blubbed like a blubber before got in, and blubbed getting out. I've worked out the sequences so now kow when it's coming to an end
They seemed very impressed ( looked quizzical )when I asked why they'd put in another sequence at the end... That was another moment.. Thought machine was going to take off those protons were having such a grand old time..

Hello All. So I went on Patient Access this morning in (I assumed) a vain hope to try to see if there was anything there about my breast biopsy. The waiting is excruciating.

There is an attachment in the documents section that has the words "not for disclosure to the patient - this letter contains sensitive information that will be discussed with the patient in person in a supported environment" so I assume it shouldn't be there.

It is a report on last Tuesday's MDT meeting and says "B3 papilloma, no epithelial atypia". I take this to be good but they are taking the results to the MDT meeting today. Why are they doing this if it is benign? And why the sensitive warning? And what should I do? Should I call the breast care team?

Going a bit nuts, as I am sure you can imagine! Thank you for any advice!

Yes definitely call @Fantasmic143 - my DD worked at a GP surgery where an administrator disclosed cancer to a patient who hadn't been told by a doctor and it was treated as an emergency for a GP to speak to them. Hopefully good news in your situation but definitely check. The specialist nurses were great with me over the phone when I received a phone call about an appointment that could only mean bad news, they were happy to explain it to me immediately rather than making me wait over the weekend.

@Tilllly I just do my yoga breathing and zone out with my eyes shut. I usually go to sleep. Yes I am a bit claustrophobic but more with things like caves and underwater obstacles.
Feeling better at last! Blisters healed, went to the dentist today and haircut booked for Thursday. Starting online Gentle Recovery course online too, lots more yoga breathing and core strength stuff. The norovirus kindly helped me shift 2kg to which all helps. It’s a slow crawl towards the New Normal.

@Fantasmic143 they probably attach that notice to all results even benign ones like yours. Great news by the way! 🎉

Sending all strength and fortitude
Top

Thank you very much @SierraSapphire and @TopOfTheCliff

I called the breast care team and yes, they do put that on all results. And I need to talk to the breast secretary for an explanation so have left a message. Fingers crossed all is good!

On one of these threads ages ago someone likened a CT scan to a 'bad Spanish disco' which I've never forgotten.

I also love an MRI - I get the full body four or five times a year, arms strapped in, head cage, cameras piled on, the works and still manage to drift off at points. I've got the 80s playlist memorized now so I know exactly how much longer I have to go.

Hi all - I’ve been recalled after a routine mammogram as my twirls were “unclear”.

i go in a few days. And I’m feeling a little bit nervous

I have my consultants appointment in the morning to find out how the radiotherapy went and the next stage of treatment. Hopefully there will be one! I feel fine but Im craving sweet things all the time is that part of it?

Good luck with your appointment @EachandEveryone

I didn't develop a sweet tooth after radiotherapy but are you eating otherwise?

Morning all. Just had a call from a consultant at the breast unit to discuss the results of my biopsy. It does show a papilloma which is benign. But to be sure that this is all, I will be having another biopsy - a vacuum-assisted excision - with a bigger needle to take more tissue for them to check. So all good at this stage. Thank you so much for the support and advice!

Hi good morning everyone. I’m due to go for my chemo drip on Friday. I go every third week with tablets for two weeks in between. My daughter has covid, tested her this morning. Do I need to phone the hospital. I’m ok myself, but I know I will get it. If I don’t get it before Friday, will I be ok to go? I don’t want it to delay my treatment. I don’t want to give anyone covid either. People around me will be vulnerable plus the nurses treating patients. I’m halfway through my 12 week treatment. Thank you

When was your last covid vaccine? If you are on chemo you count as immunosuppressed and therefore are eligible for a vaccine. Transmission isn't 100%, you may be ok, but best to do what you can to minimise infection. My oncology unit has an instant (well, 8 minute) covid test machine and has isolation rooms which are presumably used if someone needs treatment while being infectious but all you can do is be honest with them and let the professionals make the judgement calls about the balance of risks to you and others.

@Fantasmic143 that's good news

See if you can find your hospital's covid policy online. At mine, you are asked to let them know if you have certain symptoms, or have tested positive, or have been in contact with a known case, so that they can take precautions, but they don't interrupt your treatment. Don't know if it's the same as yours but it'd be worthwhile to check.

Also consider that say a week's delay in your treatment might not make much difference, so if they did propose a short delay you could ask the oncology team / nurses about that. One of my oncs said to me "Chemo is a marathon not a sprint!" 😁 But my situation is likely very different, and of course every patient and exact course of treatment is individual so if it comes to that, just ask.

Right now you can let them know about your DD and then if you test positive or develop symptoms, let them know that as well. That lets them use extra PPE, isolate you from others or whatever they need to do to keep staff and patients protected if they do go ahead with your treatment on Friday.

Hugs and hope your daughter is well soon and that you don't get it after all!

LuciaPillson. HohiyiKozbevi
thank you for your comment. I’ll phone the ward this afternoon. I have no symptoms but I know I will catch it. I had a tumour in my colon, they removed it all, no spread or lymph nodes damaged. Getting chemo for cells that were left. It was optional but decided to go for the chemo. It’s been shit but I wasn’t expecting it to be a walk in the park. I hope yous are all ok. Thanks again for your responses, it’s much appreciated xx

Im going to try not to bore you all and please jump in if you have any experience of any parts to this.

So the cancer cells in my groin have halved in activity and apparently the radiotherapy will still work for awhile I dont know for how many weeks. Its nowhere else. I can have immunotherapy if I have to be treated with chemo again. Has anyone here had chemo twice? He has booked me in for the lovely MRI etc in 8-12 weeks. He wont let me have my picc removed☹️

in the meantime the tiny nodule that has always shown up on my breast has doubled in size since my last scan three months ago so now I am on the pathway for that. More fun and games. He said if its anything it will just be a lumpectomy. Ill take that with a pinch of salt.

so, is this good news or not?

also theres fluid in my upper abdo and again hes not concerned but its weird as I can always see it above my belly button below my ribs.

anyway im sad I still cant swim. However Im determined to shift some of this weight somehow.

Hi, I'm just wondering when the best time is to take dressings off after a lumpectomy/lymph node biopsy. I was told at the hospital that it wouldn't be the end of the world if it came off after 2-3 days, but that I should keep it on as long as possible. Another lady on the ward who was having surgery said that she kept hers on until her post op appointment, that isn't until 29th November, so a long wait. I spoke to a family friend today (who used to be a nurse) and she thought I should take it off around now cause of warmth and risk of bacteria etc. Everything feels okish,just a bit uncomfortable but I do feel a bit more protected with the dressings on, just wondering what other people have done.

@Octopus45 I took my dressing off after 48 hours and had a shower without getting the steristrips too wet. No soap or deodorant though for a couple of weeks. Took steristrips off after a week. Hope this helps and all the best with recovery.

Thanks '@tam23, I'll probably take it all off in a couple of days. Have been washing myself still and using deodorant.

@EachandEveryone I had pelvic radiation as well, was told it does it's stuff for up to 12 weeks after last does, so your scan timeline would make sense.

@Slitheringheights it sounds like you are having the same treatment I had for a tumour in my colon (which had spread to one lymph node that was removed). How old is your DD? Mine also has covid and first developed symptoms 8 days ago. So far nobody else in the family has caught it. However she has isolated in her bedroom from the first symptom even though she didn’t test positive for 4 days. She’s 17 so it’s doable. Much harder with a younger child but still worth wearing a mask and lots of hand washing to try to avoid getting it. I picked up a cold a month after chemo finished and was much sicker than I would normally be. Ended up on antibiotics for a chest infection.

I had a liver biopsy yesterday and was asked to do a rapid Covid test at home due to DD being positive. I’m in Australia so different protocols.

Can anyone help me with a PICC line question?

Having one fitted on Friday. Will have to be in right arm due to lymph node removal on left. But what then happens about blood pressure cuffs? Surely the PICC line will be in the way?

I always take mine on the left arm as thats what im used to. Is it because of the lymph nodes you cant do it that side? Or are the readings different?

i asked if I could have mine out today but he said no its not worth it. Ive had it inn11 months now and I long to swim.

Thank you for your message. My daughter is 11. I think I’m on the capox treatment? Hopefully those cells are decreasing. Im scared to ask. Im so on edge these days. I hope you are well. xx

Remaker · Today 21:41
that last message was for you. Technology isn’t my thing lol 😂 x