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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Thank you @MrsPnut. Sorry you are ill.

Hi, tomorrow is my follow up from op appointment where I find out if they got everything and what the ongoing treatment will be. I am bricking it tbh…

I hope it goes better than you fear @Podgedodge.

@Podgedodge I hope your margin was clear and there was not much node involvement. It’s very difficult when you are waiting for the news.

I’m hoping for a clear margin this time, or we need to start discussing mastectomy as this was a shave due to an unclear margin last time. I have had chemo in between but this operation was so much easier than the axial node clearance and double mammoplasty.

I was out and about the next day and driving on Saturday after Wednesday surgery.

Hope the test results are good Podge, hope they got everything and the rest of the treatment plan isn't too gruelling.

Hope you also have clear margins MrsPnut and hope you can shortly put cancer behind you.

Good luck for tests today Sunshine I have been through lots of tests due to bleeding as I bled from everywhere a lot at times. I have always got clear checks on those - ones like yours mine has been fibroids which are quite common and sometimes they leave sometimes they take out, but the op I had to remove them was very short.

My covid test is negative and all pre op checks are based. Some sentinel node prep on Thursday, not sure what that is, I guess some radioactive dye on similar in me, as it says nuclear medicine department. Anyone know can you bathe after that and do they leave anything in or just inject you? Just wandering when I can take my last bath. I have gone for the mastectomy rather than lumpectomy as its a big lump and lobular and they said lobular is often worse in surgery than on scans and want to be clear on margins. It will be strange being flat one side but they said reconstruction would be another month and a half if I wanted two together, will be 1 to 2 year wait for delayed reconstruction on NHS. I also think will have to do at least radio for 3 weeks after and tamoxifen but plan is tbd after surgery. They said a maybe for chemo, 6 sessions, 3 weeks apart but said as its lobular and HER2 negative its a maybe as have to weigh up costs re benefits and may not help for me. I would rather not do it unless I have to but that is for later.

Just popping back to wish you well for your surgery silkiechickens. I had a therapeutic reduction + lift on my affected boob nearly 2 years ago (still waiting to have my other boob operated on). It's surprising how quickly you get used to being rather lop sided, though. Good luck x

Well, need chemo. Have appointment with oncology tomorrow. And secon smaller op. Then radiotherapy and hormone treatment. Surgeon said would be a hard year. Feeling a bit down.

@Podgedodge I'm just done with that year. It seems so long from that end - but this too shall pass.

@Silkieschickens hope all goes more smoothly from here.

Just got my appt to have my port out in Jan Just need to get my lung inflammation down.

Thanks Peace and Aciony

Podge So sorry to hear that.

And hope things move a bit smoother for you Silkie, you are having enough of a battle besides the illness!

Sorry Podge. That’s hard. To have hoped it had all been got and then be set back…

Sorry to hear that Podge. Take care.

silkie, all the very best for when you have your op. I was never afraid of mine, in fact I couldn’t wait for it not that I had to wait long, just two weeks from my first appt to my surgery. It was my results that terrified me and in all honesty I found my op a doddle despite being filleted like a fish. 😊

Apparently mine is primary peritoneal cancer, so like-but-not-actually-ovarian. From January, 3 cycles of chemo, scan, operation to fillet like a fish (thank you, Broon!!), then 3 more chemo. It’s all a bit of a headfuck, but the nurse is talking about ‘having a long time’, rather than absolute death sentence…. I want to ask about options of hipec chemo rather than standard, though I’m sure they have their reasons…

I wasn't sure whether to post as I feel a bit of an idiot, I have known about my GIST (gastrointestinal Stromal Tumour) for 9 years since it was discovered by accident when I had coeliac biopsies 9 years ago. I've had annual endoscopies since then to check on it, it's always been the same size (17mm). Earlier this year in July they decided to do an MRI instead and last Thursday my consultant rang me to tell me my GIST has grown to 24mm and he's referred my case to the MDT meeting which is this Friday, where the oncologist/surgeons/whole team will decide what to do with me.
I know GISTs are cancer but have never thought of myself as having cancer until now, I literally put it to the back of my mind for the last 9 years, now they are talking about surgery and referrals to specialist treatment centres because it's a rare cancer and mine is in a rare spot in my duodenum which I had previously been told was inoperable although my current dr thinks not.
I'm 49, divorced, have five kids (11-19) living with me full time, I work full time, I'm about to start post grad study and look after my mum who has Parkinson’s. I also started a new job two months ago so the timing isn't great as I'm still in my probationary period.
I'm expecting a phone call after the meeting on Friday. It just doesn't feel real. Chemo doesn't work on this kind of cancer but there are other drugs apparently but I'm expecting surgery might be able to remove the whole of it, with a resection if they decide they can do it.

Thanks Podge and MaHBroon I think surgery is the only urgent part so should be fine now re timings - covid permitting. I am strangely excited about surgery though a bit nervous about being sent home same day.

MrsWooster Sorry to hear they have found a primary, is that primary plus mets then or just primary? If its stage 4 mine did say one treatment they would give me only me came out 6 years ago so there is new treatment and improvement all the time. So sorry you have that with kids though.

I don't know what I will have after this they said they would decide after surgery. I do wonder if they are breaking the bad news up and will hit me with lots of treatments though I went for mastectomy rather than lumpectomy to try and avoid triple surgery if have a reconstruction as well. But they did mention radio may happen for 3 weeks, hormone tablets a definite and said chemo was more unclear but possible six sessions every 3 weeks. So 2022 could be an amazing year. Though at least there are others to go through it with but would be much nicer to all meet on a cruise or something similar.

MissSmiley,

I’m also living with a rare cancer that doesn’t respond to treatment so despite my diagnosis being stage being 1a i most certainly haven’t got lucky with my diagnosis. I look upon it as - if it comes back treating it will be like going out to play a football match with my feet tied together and a blindfold on ( and that isn’t an exaggeration). In fact I’ve already decided I may not even treat it and that I’d rather go for quality than quantity - but as the mum to 5 and grandma to soon to be 8 it’s not really all about me.

I don’t know what to say when I come across others in this same situation but hello from me to you anyway.

Welcome MrsSmiley So sorry to hear you have cancer and hope they can treat that. At least it is growing very slowly. Sounds like you are incredibly busy already there.

@MrsWooster

Apparently mine is primary peritoneal cancer, so like-but-not-actually-ovarian. From January, 3 cycles of chemo, scan, operation to fillet like a fish (thank you, Broon!!), then 3 more chemo. It’s all a bit of a headfuck, but the nurse is talking about ‘having a long time’, rather than absolute death sentence…. I want to ask about options of hipec chemo rather than standard, though I’m sure they have their reasons…

Hello MrsWooster, just to say that I’ve read your post and I’m thinking of you. ☺️

Greetings all. I've been busy taking DM Xmas shopping and chasing online orders that haven't arrived.
I'm reaching annual milestones now with a year since my Lumpectomy and axillary node clearance and my first review mammogram coming up this Friday. I had a call from the Breast clinic doctor who is switching my anastrozole to exemestane to see if it causes less joint pain. I am not optimistic TBH as I think it is a class effect. I do find exercise helps the pain and stiffness though.
@Silkieschickens great to hear you are getting your op this week. Fingers crossed it all goes ahead smoothly.
@MrsPnut great to hear that the gynaecologist is pleased with you nd you are moving away from the full on treatment mode. They kept warning me I would fall apart once I stepped off the treadmill but it hasn't happened yet. I find my lovely woo yoga lady keeps my mental health balanced!
@Podgedodge it's tough to hear you need so much more treatment and potentially chemo as well. Have they done an Oncoscore to see if chemo will help? While it is gruelling and hard to get through we are all proof it is doable.
@MrsWooster I don't know about chemo but would it help to ring Macmillan? They will have the knowledge somewhere.
@Acinonyx2 good news about the port! Does that mean no more kadcycla now? You must be so relieved and yet...

I am planning next year's adventures. I think I may try to raise some money for Macmillan with a joint sail and cycle round the UK with my DH. He will pedal along the coast trying to catch me for a bunk for the night We will set off at Easter and see how far we can get. It is giving me plenty of planning to keep me busy and take my mind off the impending mammogram.

@HauntedDishcloth I understand you wanting to put all this out of your mind. Let's hope Covid doesn't mess up everything we have planned for Christmas after cancer has messed up the last year.

Best wishes to all.
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I'm not sure if I 've introduced myself on this thread . I was diagnosed with stage 4 ovarian cancer in June 2020. I started treatment 18 months ago and I had chemo,surgery and Avastin as maintenance.

Today I finished my last treatment and walked away from the chemo suite and hopefully I won't see them again for a good long time🙏. I'm firmly in 'wait and see' land which is scary in its self but today I'm celebrating the end of this phase .
At the start of this I didn't think I would see this day but I did, I'm here and I will face whatever the future brings.

Congratulations Running.

I’m really pleased for you ☺️

My sister in law is also stage 4 and just today we saw that she can start a trial very soon that was closed to her because she’s in Scotland. Seemingly the drug has just been okayed North of the border.

@Running I have my last chemo tomorrow so we're in a similar place. Did you ring the bell? I don't know if I will - part of me wants to and get the nurses to take a photo to put on social media to remind friends and family of the importance of checking for lumps (not all know about my cancer) but the introvert in me is cringing at the idea that people might think I'm looking for attention or sympathy when the opposite is true.

I'm currently in that particular steroid induced hell of desperately needing sleep but being wide awake. The school run tomorrow could be interesting.

Thanks Top Hope you can find something to ease the joint pain.

Congrats Running and Sewing on reaching the end of treatment.

Hi sewing I don't think there was a bell at the unit. I decided I would go public with my cancer at the end of treatment but it's a very person decision. I hope your last treatment goes well, you managed some rest and the school runs not to challenging !