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

Sounds like you need a break from Cancerland, @HauntedDishcloth!

And while there are always scary media stories about secondaries, I think as a public service announcement that early stage ladies should ask their doctors about what recurrence/mets development looks/feels like so they can be aware and push for testing when something isn't right, or know to contact oncology.

@HauntedDishcloth Great news about the nodes! Though I hear you re fear about secondaries. A social media break may not be a bad idea.

@Acinonyx2 I’m so sorry to hear about the difficult healing - by this stage you really don’t want to be dealing with yet another thing. I hope you get some good advice soon and can be back on track for rads.

I have my pre-mapping appt tomorrow. Things seem to be dragging on but I guess it’s just as well sun getting time to heal. Lost a thumbnail today (thanks, Docetaxel!) but otherwise feeling good.

Any BC folx able to tell me how they felt after 15 radiations? We’re booked to go camping about a week after I’m due to finish and I’m a bit worried about what shape I’ll be in…

@HauntedDishcloth it’s all part of the process learning to live with the uncertainty. I signed up for Breast Cancer Now Moving Forward course online and while it was rather quiet and nobody much interacted on the course they have some excellent resources on what to look out for and how recurrence presents, how to deal with the Fear, and all the other niggles about recovery and regaining fitness and rebuilding your life.
Being a pragmatist I have made a conscious effort to consider myself cured but even I went trotting off when I found a big lymph node and got it scanned and biopsied. Of course it was all fine but terrifying.

I have weaned myself off amitriptyline now and although I am now much more alert and less prone to falling asleep I have pain in lots of places. For now I shall stay off it but I can see why people get dependent on pills. It is very tiring when everything hurts. In Toppish fashion I am going to a daily exercise class or doing a bike ride so my fitness is coming up nicely but with lots of groaning and moaning. I am working towards a mini adventure in two weeks time when my cycle club will set off on a three day tour across the county. I will have to stop thinking I am allowed to be slow and making excuses Because I Had Cancer. In other news I had my first haircut for a year and applied for a new passport in my newish married name. That is going to cause a heap of work changing everything over to the new name. But it will be a fresh cancer free start!

Best wishes to all still toiling in the mire. I can’t believe it’s a whole year since I got those dreaded results!
Top

@backformore I had the five intense doses of radiotherapy back in February. It was surprisingly trouble free with no skin soreness or fatigue. I still have a tender boob now with morning swelling and bobbly bits but I could have happily gone camping. I think it’s luck whether you get sore skin or not.
Good luck
Top

@topofthecliff thanks for mentioning the Moving Forward course. When I’ve finished treatment, I will sign up for it.

I’m at the end of the first week of my first Docetaxel cycle and feeling like I have a cold, so much so I did a COVID test. My head feels like a ball of pain, nose feels scabby inside and sores all over my mouth. Any gentle tooth paste recommendations greatly received.

Morning lovelies

@backformore how long after surgery is your rads as I'm so sore and can't imagine coping with it for months. Still want to go in our caravan.

@TopOfTheCliff first hair cut, that will be a top moment on my recovery list.

@Lunificent sores are so common and they gave me mouthwash and said if that doesn't work they have something even better. I feel for you as I have a tiny sore patch on my tongue from the anaesthetic and that's bad enough.

Blue wee again this morning, not had that since Saturday. Lovely ☺️

Laters 👋

HC x

I have got the dreadful munchies. However much I eat Im still getting hunger pangs ! Finished my 3 days worth of steroids 4 days ago so it must be the chemo.

Blue wee HC, I only know about red wee from Caelyx !
Had CT scan Monday, appointment at 3.45 was out at 4.05 well impressed. I have to say the hospital have been brilliant throughout
my treatment. (Not my local hospital I have to say least said about that the better)

@Lunificent also use a soft kids toothbrush. The mouth wash I was recommended is Diflam - it has some antiseptic in it. I couldn't have my beloved chillis or pickles and ate a lot of ice cream and soft puddings like pannacotta. Mashed potato also featured heavily.

@TopOfTheCliff I'll also look at that course in future. Glad to see the Topish spirit is still evident. I'm also keen to keep up my physical fitness.

I'm also thinking about some other project that can keep me afloat - something to distract and entertain me as I am feeling rather gloomy about my situation and although the delay is not good I dread doing rads and what might happen.

@backformore sorry about the thumb nail. (I'm mildly obsessed with my nails.) I shall follow your rads progress with interest.

Hi to all, I haven't been around for a while having been busy with radiotherapy and the puppy (who has grown huge, more bloodhound than beagle I think!)!
@backformore I finished 33 rads exactly a week ago and would be fine to go camping. I can't believe how quickly my skin has recovered - a week ago I had a few painful bleeding sores under boob and on my side and back. All healed now.
@Acinonyx2 What bad luck with the glue allergy and kadcyla. Hope you're finally on the mend.
@TopOfTheCliff Thanks for inspiring me to go for a bike ride this afternoon and have a great time on your trip.
Best wishes to all.

@HumphreysCorner I felt the same way after surgery re discomfort/fear of radiation on top of it. I’m five weeks post surgery now, though, and feeling so much better. Things started to improve noticeably for me around week three, if that’s any help. I still get twinges and that elastic stretchy feeling, but no actual pain when I move my arm. Have stopped bothering with the stretches but I did them religiously for the first month. Hang in there!

(My surgeon told me that it’s usually three months before patients feel as though they never had surgery, which is still a ways off for me - but I can at least believe it’s possible…)

@bontopia That’s very encouraging - thank you!

I've been for my biopsy results today and I have Stage 2 lobular breast cancer. I need to have an MRI which will determine what happens next, that will happen in the next week.
If they find more cancer in the breast it will probably be chemo and then a mastectomy. If it’s just that one lump I will have a lumpectomy (lump removal ) and radiotherapy. They’re looking at an operation in August.
I’m feeling very positive and feel so much better now I know for sure and what the plan is

They also said I was oestrogen positive and HER2 borderline but I'm confused with what that means.

Sorry for my Virgin cancer brain.

Just read up on it so I'm no longer a Virgin

@BG2015 same diagnosis as I had back in march. It was lumpectomy and radiotherapy for me. This is the worst bit… it’s horrid till you know what you’re up against. Hang in there.

@BG2015 - waiting is the worst bit. It’s easier once you have a plan.

@HauntedDishcloth - DM has lived in fear of secondaries for the past 20 years (she was triple negative with node involvement) I seem to have lived with it too and am hoping the logic I have applied to her I can apply to myself! I don’t want to project onto my children so try and remain in the present day. I can’t believe though I am less than 12 weeks since diagnosis and I may feel differently in a year. My psychologist has said the hardest part for many is when treatment ends and you’re left with your own thoughts and the fact everyone expects you to click back to normal.

@HumphreysCorner - hope you’re recovery continues
@Lunificent - a friend who went through treatment a couple of years ago brought me round some Oranurse toothpaste. I haven’t used it but it’s unflavoured and gentle.

@TopOfTheCliff- you seem to have made brilliant efforts with your fitness. Did you start on arms etc before surgery? I’m due my mastectomy in September and am wondering whether a head start might be useful.

When I was first diagnosed I was dead set against reconstruction but as time has passed I am reconsidering. I saw a different surgeon yesterday re a diep reconstruction with lymph node transplant. He said I am at high risk of lymphedema as both DM and DGM have / had it. It appears a big operation with considerable healing time. Given that my port took 3 weeks to settle (but wouldn’t be without it now) and @Acinonyx2’s experience, I am slightly apprehensive. He said I would be a smaller cup than I am now (C/D) and there wasn’t too much to work with in the abdominal area while I was bleating on about my lockdown weight gain . In the next couple of weeks he will inject dye though my fingers to look at the pathways on a scanner. I’m not sure what to do so will have to research further.

Moving onto vaginal HRT was a no from my oncologist even through I suggested that from the research I’d seen that it doesn’t pass into the bloodstream and I have a ER- cancer. I have to try other creams and stuff first. Miffed they didn’t warn me about this at the start of treatment and I could have been more proactive.

Hi all

Super sore today, think it must be knitting together.

@HauntedDishcloth I think I will struggle mentally when treatment finishes and I wait for a check up. Hugs

@BG2015 I remember having lots of different biopsies and various scans but once I saw the Dr and he gave me a treatment plan based on all the results and I had a start date I felt a sense of relief. At the time I seemed to be waiting ages but in the grand scheme of things it wasn't that long.

@backformore a nurse rang yesterday and told me 6 months recovery. That's in the New Year 😭When I go back to work after the rads I'm hoping to be able to pick up the children.

3 more days and I can ditch the surgical stockings. Had a bath yesterday and only DH can put them back on so enjoyed a few hours without them. Made sure I walked around a bit.

Have DD2 at home as she's self isolating due to a case in her bubble. Love having the company even though we are in different rooms.

Big wave 👋

HC x

@Thymeout Things here in NI appear to be on the go slow train. I had first scan Tuesday week ago and still no results. I have phoned colorectal nurse twice no answer and left message. No reply yet. I phoned oncologist secretary who said results were not yet on the system !! Then my mind started telling me she saw them a d they were bad so she doesn't want to tell me. I've steadied myself again now. It's just scary waiting on results and post treatment plan. My surgeons secretary said I'm on waiting list for reversal but no date even to plan this yet. It's a total rollercoaster as everyone here will relate to.

But onwards we must trod. You are a very young at heart 80 year olds with loads of life in you yet. Covid has a lot to answer for no less to cancer patients. It's awful that all the seats are taken away. I've noticed that too. Also hard to get access sometimes toilet which I really depend on.

Good luck with July review. I think I may have mine Also in July. Possibly the 20th. Would be nice to get wee reprieve.

Xxx

Morning all - I've just read through all the posts since I last caught up. Warm greetings to newcomers @RocketPanda, @kimlo and @Blooter. Wishing you minimal delays while waiting for results, treatment plans procedures and all the rest (kimlo I hope you can get the biopsy sooner, 6-8 weeks is ages).
Sympathy to all struggling with horrors such as bowel issues, vertigo, pain, nausea and anxiety - @MrsPnut, @Acinonyx2, @thereisonlyoneofme, @gismosnana.
Good luck to those who have recently started chemo or are about to - @JeanneFrench, thereisonlyoneofme, @Timmythetumourgotne
@JeanLannes hard times in your family, I'm sorry. Have you got an appointment for the MRI? Good idea to be proactive in trying to prevent lymphoedema.
@OrdinaryLife I hope the node can be removed very easily and turns out to be nothing of concern.
@BG2015 sorry about the diagnosis, but as you say it's better to have the info and a treatment plan. Hope all goes well for you over the next couple of months.
@HumphreysCorner congrats on getting through surgery, wishing you a good recovery with minimal pain.
@bontopia nice to see you again! That's great that your skin has recovered so quickly after mega course of rads. How about a photo of your giant puppy?
@Thymeout I love the sound of your Sholley - I did go on their website! That'll be for me, if I ever need one (ponders whether special French bread compartment would be necessary . . )
@Zorgothslugofdoom glad to hear you are through the balancing surgery, hope you're doing OK.
@barkydog good news and not so good news, shame they couldn't get clear margins - did you say next surgery in a couple of weeks?
@TopOfTheCliff have you recovered from house guests and are you going to have some time off from Other People? I've booked myself 3 nights in a guesthouse in Norfolk later this month when DP is away; it's ages, I mean decades probably, since I've been away on my own and I am looking forward to it, although I'm not sure I'll be as happy as if she were with me. Hope your aches and pains subside and good luck with the bike ride, you Amazon!
@backformore how did your appointment go yesterday? Eek re lost fingernail, hope you keep the other 9!

Since that was such a mega post I'm doing another to tell you all about MEEEE!
After starting oral chemo maintenance (niraparib) at the end of May, after three weeks my platelets had dropped so much I had a two week break. Now back up and I started again on a half dose last night. Consultant reassured me the vast majority of women have to reduce the dose and results are still very good. She also told me there are treatment options if/when this stops working, more IV chemo - although I am not absolutely sure I would put myself through that again.
I'm still waiting for the OK to start on SafeFit, had an echocardiogram on Tuesday which as I expected was fine, but consultant wants me to wait until bloods have been stable for a couple of weeks to avoid risk of excessive bleeding if I hurt myself while exercising . .
I went back to rowing last week for the first time in aaages which was brilliant. Long cox, short paddle. Going again today.
Horrible time this week after someone got into the house on Saturday and stole my laptop (suspect garden workmen left a key lying around). Frantic phone calls and online activity to stop cards and change passwords, get locks changed etc. Now have new laptop, and nothing terrible seems to have happened, but insurance wouldn't pay out as no forced entry.
Like Top I have had my first proper haircut in over two years, a distinct improvement on DP's clipper efforts!
Must get going now - love to all!

Hi @bg2015. I was her2 borderline. After further testing they found I was her2 positive. I think about 20% of bc patients are her2+. It has meant for me that I am having chemo before the surgery and am having targeted chemo: trastuzamab and pertuzamab.

I’d be grateful for any advice about neuropathy in my hands - on day 9 of cycle 1 of Docetaxel. My hands feel like stiff, stinging crab claws. Is there anything I can do myself to make them feel more normal?

@Lunificent I suspect I will be HER2 + too.

I'm trying not to think too far ahead. Read some posts on another forum about Herceptin drugs and how rubbish they can make you feel. I think I've got to just take one day at a time.

Ive also been feeling what must be anxiety type feelings - like somebody is standing on my chest. I'm normally a very strong, hold it together person so never felt like this before.

I did a bit of yoga and it helped. Just waiting on an MRI now to see more!

@Bloodybridget Here's the giant puppy on his first mountain trip. Very impressive that you've been rowing - my teenagers are obsessed but I've never been brave enough to try. Fingers crossed for trouble free chemo for you.

@BG2015 best wishes for your mri and if you are her2+ at least it has a good prognosis and lots of new treatment options.

This is KTG here under my original name. I had a chest scan with contrast media - just a routine thing to check if the cancer had spread, I doubt it has but they have to do it as part of the protocol. I had to drink about 4-5 cups of this disgusting aniseed drink and I thought I'd pissed myself when they injected the contrast medium into me (I hadn't).

I know I shouldn't be upset because I'm not dying, the cancer's most likely gone and I'm going to be OK but it does get to me sometimes. As does not having anyone with me when I have to do the hospital visits. The loneliness is unbearable.

@bontopia dog is almost as gorgeous as landscape! I can't remember where you live, but please let me know asap so I can join you!

@PhilSwagielka hope you don't have to wait long for scan results and that all is well. How vile to have to swallow that liquid. The feeling of having wet yourself happens every time with contrast MRIs. Quite understandable to feel upset and worried about still needing monitoring for spread, and the loneliness of having to go in on your own every time. There is nothing good about any of this, except that there are such effective treatments and monitoring procedures available to us. Sending you love and good wishes x