Cancer Support Thread #81 Newbies welcome

[TopOfTheCliff]

This is a kind and friendly place for those with cancer or those worried they have cancer (or who used to have cancer) to hang out.
Please introduce yourselves and chat away. No issues are too big or small here.
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Hope you don’t mind me posting but I wanted to thank @HerbalRefreshement for her update. My DM went from thinking her stage 1BC, diagnosed and treated 3 years ago was done and dusted, to being floored with a stage 4 diagnosis earlier this year when her ongoing back ache proved to be mets. She is now on Palbociclib and letrozole plus monthly zolendronic acid infusions, and her last 2 scans have been stable, so great to hear you are 2 years down the line and the meds are working well. Thank you

Just a couple of questions for anyone who can help?

I am now 9 days post surgery for mastectomy with ANC. I am doing my daily exercises and moving a lot but still very sore and stiff. Feels like something is pulling down the arms. Is this to be expected? I have a call out to my BCN but generally get better advice from here!

I am seeing my surgeon at the end of the week for it pathology results. What should I be asking him? I don’t feel I know a lot about my cancer. I know from a letter from the surgeon to the oncologist about the results from my biopsies showed Her2 3+ and a ki67 score which I understand from looking it up is an indication of how fast the cells are dividing. I was not CC’d on this letter but asked for a copy a couple of months ago. I haven’t seen the MRI scans (should I?) but I as sent a copy of the report from the mid point scan. I have not seen my oncologist since finishing chemo. He is a man of few words but I am being treated at one of the major cancer hospitals and the nurses have told me (when I have asked) that he is is very through and protocol led.

I understand different people want to know different levels of information but I am interested in what your experience has been against expectations and should I be asking / being told or shown more? I don’t want to come across as needy but don’t want to be blind either?

@JeanLannes I can't comment about your post surgical tightness because my surgery was very different but I wondered if you have seen a physiotherapist yet? I saw a physio within a week of surgery (lumpectomy) so for your far more major surgery I would have expected at least the same if not more. Something to ask your BCN perhaps?

As for asking questions and being 'needy' - this is your body and your health and your future and you should ask as much and as often as you need to get the information and reassurances you need. Every single letter between the various health care professionals that I have been copied in on has commented on the number of questions and amount of information I and my husband asked for, not in a judgemental way at all but more I think to flag to others that we want to know more not less. I insisted that my first consultation with my oncologist was face to face - originally set up as a phone call - because I wanted to look her in the eye when she was making treatment recommendations. I needed the reassurance of being able to read her body language as well as hear her words. Things like this are important for our peace of mind so please ask for what you need and don't berate yourself for it. ❤️

Forgot to ask and I will clarify about with my nurses team, before the PICC procedure, do you think I could ask for something to make me relax? As I'm getting high blood pressure every time they go near me with a needle and I want to be relaxed during the procedure 😳.

@PaddingtonStareBare it's definitely worth asking you team. I didn't need to use anything for my PICC but I was given a sedative when I was struggling to tolerate the cold cap. Apart from the local anaesthetic, I didn't feel or see my PICC being fitted. I hope it goes well for you

@JeanLannes could it be a bit of cording from the ANC?

Hi. I had cancer. I was diagnosed at 36 with 5 year old twins. I had triple neg breast cancer. Had chemotherapy (3 x EC & 3 x docetaxel) surgery (lumpectomy) and radiotherapy (15). That was 10 years ago. Just have annual checks now. Here is anyone needs to talk or ask any questions.

Hi all I can't believe we're on thread 81!
I'm 51 I was diagnosed with stage 4 high grade serous ovarian cancer in 2020. I had chemo x4 then surgery followed by 2 more chemos. I'm on maintenance therapy, Bevacizumab 3 weekly.
I took up running after treatment and recently ran the Bristol 10k and raised £510 for Penny Brohn who support people living with cancer. I also recently had covid which passed without event just a lot of time on my own watching tv and eating biscuits ,Hooray for the vaccine.

Unfortunately my sons school has a outbreak 7 children in his class and 3 of the teaching staff have all tested positive. We are waiting for my sons results so fingers crossed for negative I'm not sure how to avoid contact with a poorly 8 year old.x

@Milliways Im glad my update could help! Actually, my most recent scan last week showed extremely slight growth in my primary breast tumor so I am now a candidate for surgical removal. Its a little concerning, but the bones remain stable which is the important part and the local treatment will allow me to stay on this systemic treatment a bit longer.

Sounds like your mum is doing well - once you get used to this its almost possible to forget you have MBC, at least for a little while.

@PaddingtonStareBare

Forgot to ask and I will clarify about with my nurses team, before the PICC procedure, do you think I could ask for something to make me relax? As I'm getting high blood pressure every time they go near me with a needle and I want to be relaxed during the procedure 😳.

Hope your PICC insertion goes smoothly, I'm having the same on Monday. My first chemo was done via cannula but I just hate them so much, so I'm glad I can have a PICC.

Friends have said they're so much easier and kinder on your veins. Just the weekly flushing out that's a bit of a pain.

I'm on day 19 after my first chemo. Woke up this morning with scalp pain and a bit of shedding, not a lot, but enough. My scalp feels like I've had a pony tail in all day that's too tight!

I've been waiting for this so I'm well prepared, with turbans, beanies and a wig. Can't decide whether to just take control and buzz it off or hang on for a bit longer - I know I'm just delaying the inevitable.

@BG2015 When my hair started falling out it was matting so badly that it was very itchy and sore underneath. Shaving it off was the only way to deal with it.

@BG2015 - my head felt much better once my hair was shaved off. Having it done didn’t upset me at all and it’s never bothered me wandering around with no cap on. I found it hard when it was falling out though - and DDog was a little bemused at first!

@Acinonyx2 - it may be a cord but I am slightly nervous to dig around in the area. I am continuing my exercises and see my surgeon and BCN on Friday. Fluid is collecting now the drains are out though.

@Runningwithoutstopping - great fundraising effort.

DH is away with the DD’s this week. Just hoping the girls managed to avoid covid before they went away. Cases in schools are very high here. I am going to have my 3rd vaccine as soon as possible after my next set of treatment. I assume this will change after my pathology results.

Thank you to everyone who takes the time to share their positive stories. When I was first diagnosed I hadn’t realised how much of a mental battle I would find cancer to be. It really does help to read them.

Hi. A newbie to the thread. Not sure what I have got another than a very sore lump, still waiting to be referred, apparently under something called the two week wait (might have got that wrong)

Just waiting now, desperatly trying not to google

@Gimlisaxe Welcome, I hope your stay is short. If you have questions then please ask, it’s better than googling.

I’ve seen my oncologist tonight for the last time for a while. I have my last chemo next week and then need to have surgery again because there wasn’t a clear margin before.

My oncologist was lovely and recognised that I have had a long slog so suggested I go on holiday but my youngest is in her GCSE year so we have mocks every other month at the moment.

@JeanLannes Unless you are actually in pain then I probably wouldn't be overly concerned about weird sensations post-mastectomy, especially if you are seeing your surgeon soon who will check it I presume. They may also drain off fluid if there's enough there. It's not essential if it's a small amount but can make it more comfortable. Otherwise it eventually gets reabsorbed by the body.

Yay for your last chemo coming up @MrsPnut! Have you got to wait a while before the next surgery?

I was on an older thread while waiting for a thyroid fna. It took a long time for a few reasons.

I finally had it. Results were thy3f, so inderterminate. So I have a few suspicious ultrasound features and an inderterminate fna.

It's being removed so they can have a good look at it, and I'm feeling meh.

@JeanLannes you don't necessarily feel 'cords' just the tightness. I had a bit of this for a while but fortunately it just went away in a few weeks.

@MrsPnut that's great that you are coming to the end of chemo. You certainly have taken the scenic route...

My lung CT just showed some post-radiation scarring but I am still coughing a lot and unsure whether to try the steroids or not. Anyone else had a persistent cough after radiotherapy? Could be Kadcyla is causing some additional inflammation - hard to know.

@BG2015 buzz it off already - it will feel better.

[quote Acinonyx2]@JeanLannes you don't necessarily feel 'cords' just the tightness. I had a bit of this for a while but fortunately it just went away in a few weeks.

@MrsPnut that's great that you are coming to the end of chemo. You certainly have taken the scenic route...

My lung CT just showed some post-radiation scarring but I am still coughing a lot and unsure whether to try the steroids or not. Anyone else had a persistent cough after radiotherapy? Could be Kadcyla is causing some additional inflammation - hard to know.

@BG2015 buzz it off already - it will feel better.[/quote]
Decided it needed to go last night as my scalp was so sore. It was fine, no tears and I feel much better today.

I've been to see my oncologist this morning for a review after my first chemo. Apparently I may have something called Gilbert's Syndrome as I have raised bilirubin levels. Because of this my first chemo dose had to be reduced slightly. I've had bloods done again today which will determine what dose I get next week for chemo #2.

Anyone else have this or know about it?

Thank you @TopOfTheCliff

I am 52 and was diagnosed with Invasive Ductal BC last December. Had chemo, surgery and radiotherapy. Currently back at work but things are not so good sadly. My radio therapist phoned to say my next scan will be next June which seems an awfully long time away. However I will see my breast surgeon who is going to sort my breast symmetry operation in December/January.

Big hello and hugs to all at this difficult time x

@HumphreysCorner - am very sorry to hear things aren’t good for you. I am sending my best wishes to you.

@BG2015 - well done. I took mine all off in May. I have begun to get a fuzzy felt type covering now but am really noticing the cold now the weather has turned.

@Acinonyx2 - thank you. The BCN has said she will check it tomorrow when I go for my pathology results. I have collected a fair amount of fluid so think they will drain it too.

@kimlo - waiting for results is hard. Stay strong!

@MrsPnut - you have had such slog - great that the last chemo is coming up though. Good to hear you have a lovely oncologist too.

Sun is shining here which is very welcome after a fortnight or pretty much continual rain.

Feeling really upset. I went for my first radiotherapy session for breast cancer on my left side and couldn’t do the deep inspiration breath hold. I was fine in my planning meeting but this time I had to breathe a lot deeper and was told not to move my shoulders or back. They were really patient and I was there for about 50 minutes (sorry if you were waiting after me) but in the end I didn’t get any radiotherapy. I’m back there again later. Any tips for taking in a deep breath?

@grateful3 That does sound very upsetting. The circumstances for the planning & the actual treatment should be identical otherwise what's the point? It is a very stressful situation as it is, even though it sounds simple "just breathe deeply". I had a misunderstanding about how it worked which I only discovered in my first actual session; I was really shocked as the planning had seemed so thorough & it really threw me.

Anyway, not sure if I can offer any practical advice. Have you done any diaphragm breathing? Laying flat you can make your stomach area below your chest rise rather than just your chest by taking deeper breaths engaging more of the diaphragm. It's often used in relaxation techniques. If not, try it. However the thing is, I don't think it's really supposed to be used for radiotherapy as you're supposed to be moving the chest, but I just did whatever I could to feel like the whole area was moving outwards & it seemed to work! The technicians also let me do a few deeper breaths before going into the hold rather than just going straight into the hold from normal breathing. Some holds seemed to be better than others. I don't know why. I just tried & hoped for the best. Good luck with the next try. Hopefully the first one was just a blip.

Thank you for your reply @HauntedDishcloth. I will try your suggestion. I really appreciate your help.

@grateful3 there are a few videos online that might help and to practice. Is it the depth of the breath or the length of the hold that is the issue? I found it worked if on the hold I was not holding in but pushing against the hold if that makes sense. I also like not to rush the intake of breath - keeping it steady to the holding point - and as haunted says - taking a couple of deep practice breaths first.

Distraction is also good for the hold. I mentally drew the numbers in specific colours on the ceiling tiles. I found that quite absorbing and the time went more easily.