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

@TopOfTheCliff I also cut loose a little Mon night and had more wine than I have since diagnosis. I enjoyed it I must say - but I did feel the difference next day and don't want to slide back into old habits (which may have helped get me into this mess...).

Onc meeting today and seems like I have a new regular uber-friendly sub-onc which will be very welcome after being passed from Jim to Bob to Mary etc. And I am indeed starting new chemo next week - they will get one dose in before rads as time is pressing on.

As a pick-me-up I went to the garden centre and picnicked in the car park on ice tea, bacon crisps and aniseed sweets: really packing in the carcinogens as a treat there.

@Littlestelephant sorry you are having longer to wait.

Post surgery - anyone find their shoulder bald won't go flat? I can't lie flat on my back and have to sleep partially sitting (if I roll to side it still aggravates the glue). I thought it was just an odd feeling but now figured out that my shoulder blade is not rotating flat when I move my arm like it does on the other side

@Acinonyx2, I haven’t noticed anything with my shoulder blade (or shoulder for that matter) - all of the weirdness for me in under my arm and down my side. Maybe it depends on where your incisions were? I’m sure with time and exercise it should get better - my surgeon says three months before we’ll feel as if we haven’t been operated on.

My news today was good: only tiny tiny trace cells left in the remaining tumour specimen (1% of 1 cm), no disease in the calcifications... and 0 out of 10 collected nodes had any disease. Apparently my surgeon has never taken that many nodes in a biopsy before, and she’s delighted because that means she got a really big sample and a totally emphatic no evidence of disease. Means the chemo worked and I never needed an axillary dissection. Getting the second opinion paid off! So now it’s on to radiation in a couple of weeks, hopefully in time to enjoy the summer.

@Littlestelephant, I’m thinking of you and keeping everything crossed that you have good news next week. I hate that you’re having to wait longer and hope that you’ll be rewarded with a clear report 🤞

@backformore that is quite a lot of nodes for a biospy indeed. Nice result

@Acinonyx2 I also haven't noticed anything with my shoulder. I do have a stinging nettle sensation all down the inside of my upper arm tough. I think with all these things time is needed for it to settle.

The garden centre trip sounds like a much needed pick me up. I hope all goes well next week.

@backformore that's brilliant news I'm so pleased for you!! I can imagine the huge weight of your mind.

My DH is annoying me tonight. He's decided the pathology results not being back must mean it's all good news. I've told him it doesn't mean that at all. Just means they aren't back yet. He won't listen though and is in a very optimistic mood. I just want someone to share how crap it is and not try to bend logic to make me feel better.

@Littlestelephant I know what you mean - people need to understand that it’s crap waiting, and positive spins aren’t super helpful. My parents are the worst for this, bless them. No news just means no news. I thought my surgeon would phone me before my appt to put me out of my misery, but she evidently couldn’t because the results just weren’t there until today.

You can commiserate here, though! And we’re sending all the positive vibes in the meantime.

Humprey do you not get your PICC flushed and dressed weekly?! I would be v worried about infection risk at the entry site if my dressing came off, they have drilled it into me that NO ONE is to touch my PICC line or dressing unless they've scrubbed hands/gloved up etc and dressing changes are like a mini surgical procedure.

backformore that's a great result, must be a huge relief for you.

Thanks for the well wishes after surgery. Came home ok yesterday but today felt like I've been hit by the proverbial bus! 1kg of boobage was removed (!) and two nodes taken so now my turn waiting for results.

Good to hear the positive news @Mrs Pnut and @backformore!

@HauntedDishcloth Well done on getting through surgery, and I hope your recovery is swift and smooth!

Off to see the oncologist this afternoon. Thank you to the poster upthread who gave me a list of questions. I'm armed with them so will hopefully get some answers. We are hoping to get a few days away. I have nephroscopy bag and the district nurses have been very positive about it. So fingers crossed the oncologist agrees but I suppose that now depends on when I start chemo and how I deal with it.

Thinking about those starting treatment, awaiting results.

@Babamamananarama my PICC is flushed every 10 days but the dressing starts curling up after 3 days. Hoping to have it removed on the 25th after my op. My PICC never works anyway.

@HauntedDishcloth make sure you rest. What a relief to have had the surgery, I'm dreading mine.

@Timmythetumourgotne good luck for later.

Going to meet my friend for lunch today, not seen her since last year but she's written a letter to me every week which has been lovely.

Big wave 👋

HC x

Thinking of all those who have had surgery and are waiting for results and sending much love x
Congratulations to all those who have had positive results it always good to see positive news.
I'm waiting to hear when my next review appt is apparently they won't offer another scan unless there is a problem. I'm not sure how I feel about that I would like the reassurance if a scan. However I choose to believe that no news is good news and plod on regardless.
I'm April I started couch to 5k yesterday I did 4.5k I've got the final 5k next week. I feel incredibly proud of myself and I'm buzzing on a natural high. I never even ran for a bus before cancer. It's put me back in love with my body which had let me down so badly. I remember feeling drained mentally and physically at the end of treatment and this achievement has given me the strength to face a uncertain future xxx
I wish everyone a happy day x

Humpreyscorner I too am going to meet 3 friends I havent seen since Feb 2020! Im so excited! Weve decided (tongue in cheek) that we are going to wear a flower in our hair so we can recognize each other .
Things like this give us a boost dont they. Medical probs are going to not be on the agenda though.

Crikey. Just registered a home Covid kit for collection tomorrow. First time I've done this - bleedin' complicated!!

Had a fab time with my friend.

Hi all. I just had a thought that I’d love to go away for a few days to relax and get away from it all. Does anyone know if there is such a thing as a retreat or spa break for people with cancer, in the UK?
I’d like to be somewhere for a few days where I feel ok in my chemo hat and can relax and chat with people who know what this is like.

Sending healing thoughts to those who have had surgery or treatment and hugs for those waiting for results. I have read all the posts but struggle to remember who has posted what. Am in awe of those who remember everyone.

Well done @Lizdeflores on couch 2 5k - that is an excellent achievement 👏

@HumphreysCorner what a fab photo - you look so happy. It does make such a difference being able to see people again doesn't it. @thereisonlyoneofme have a fab time with your friends too and catching up on non medical gossip!

I have a ct scan on tues to look at the 'abnormal area of my abdominal wall' that was seen on the ultrasound. After my stress last week I've coped much better this week, probably easier back at work when I have less time to think. @Acinonyx2 your analogy about a business and throwing everything at it is a good one and its really helpful to get others perspective on these things. It certainly helped me

I like the idea of a retreat/spa @Lunificent but have no idea if there is such a thing.

Thank you @OrdinaryLife
@Lunificent I know Penny Brohn used to offer retreats but the pandemic has scuppered them.Hopefully they will be back soon, I would fancy one too.

@HumphreysCorner What a great photo. I too have been out with friends tonight and have had a few wines.

@Lunificent That sounds great, I wonder if there is a spa that could be persuaded to put on such an event. Even a day for people with cancer would be awesome.

@Lunificent The following link came up on my Facebook this morning: seachangeretreats.org They offer day & weekend retreats based around surfing or the ocean somehow. They are free & a lot seemed to be booked up already, probably because there aren't any others operating.

I know some spas offer treatments specifically for cancer patients. I might try one as a pick-me-up at some point. I don't think my chemo-ravaged body could handle a regular massage as I feel so achey & sensitive to touch in places but a gentle, soothing one would be so nice.

Hello, my Breast Cancer Nurse called yesterday to ask how I was whilst waiting for results. She said that due to being under 35 even if it's not in my nodes they might decide on chemotherapy as well as radiotherapy. My tumour was 1.5cm , grade 2, ER positive and HER negative. Has anyone ever heard of this? I thought if results came back clear I could go back to my life. Feeling a bit deflated now.

Hello i hope everyone is having as good as weekend as possible.

We have a plan - a ct scan to get a base line then 3 rounds of chemo over 9 weeks and then potentially straifht on to immunotherapy this is new thing they are trying rather than waiting for a time after.the chemo. The did say that there are no trials.suitable at the moment but things change. Hopefully I'll cope with the chemo and it will make a difference

@Littlestelephant That was nice of your nurse to call - in six months, I haven’t had anyone phone to check on me during a wait, and it can feel pretty lonely!

I haven’t heard of chemo recommended specifically bc someone’s very young (as the sole or primary reason), but I know that my age was a factor in the decision (I’m 38). That said, my tumour was bigger (4cm) and I had lymph node involvement (that was the thing that sealed the chemo for me once and for all). I’m also triple positive, which is an aggressive type. Your tumour is pretty small and if no nodes are involved I suspect there would be doctors who wouldn’t leap to chemo - maybe just lumpectomy and radiation, and possibly hormone therapy for the ER positive? But others may not want to mess about. Try not to jump to any conclusions right now (hard I know) and remember that you can seek a second opinion if your case seems borderline. (I did this with surgery: axillary clearance was the original plan, but a second doctor contradicted this and we went with sentinel biopsy instead. Results vindicated that, as all ten nodes came back clear. So in that case, the more aggressive option hadn’t been warranted. But as I’m discovering, there’s lots of disagreement between surgeons and oncologists on many of these decisions, and a lot will come down to your doctor’s personal style and risk aversion...)

Thinking of you during this wait - I know it’s the worst. There’s a website called Rethink Breast Cancer that’s specifically aimed at young women (it’s Canadian, so some treatment details may vary) - could be worth a look?

@Littlestelephant What your BCN may have meant is that you are likely a candidate (for whatever reason, but probably age here) for the Oncotype test, which will provide doctors a bit more statistical evidence for the benefit/no benefit of giving you chemo to prevent risk of recurrence/mets despite clinical indicators of no node involvement and small tumor size. Younger ladies with early stage have a lot of life yet to live so there is an argument, if the test result comes back high enough to warrant chemo, to hit the cancer hard with everything in the tool bag.

Yes, definitely true about being a candidate for other tests. For some reason I was never offered the Oncotype test, although a friend of mine (who's in her 40s) was. I was advised to get the genetic test (this was more to determine surgery type, though). Lots of variables and factors to consider...

@Littlestelephant there is a group on Facebook called the younger breast cancer network. You can message the page to be invited, they may have more information on chemo for smaller hormone positive cancers.