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Cancer Support Thread 94 - Sweetness and light - the two noblest of things.

958 replies

LemonDrizzle10 · 20/04/2024 23:44

@tilllly and Daisy.

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18
catmomof3 · 07/08/2024 19:03

@Lovemycollie I'm so sorry to hear about your recent diagnosis. I also have cervical cancer and am one week away from finishing my treatment. I did the new standard treatment which was 6 rounds of taxol/carboplatin then did 4/5 rounds of cisplatin and 25 radiotherapy. I've now done 2/3 brachytherapy. The treatment has been very tiring and it's wiped me out in all honesty, but it's all curative. I'm stage 3c1 because I had lymph node involvement. Have they booked you in for a pet scan yet? Sending you much love, this part of waiting is the worst but once you have your plan you're be able to get through it.

catmomof3 · 07/08/2024 19:14

Sorry double post.

I had my 2nd brachy yesterday and I didn't cry but I did swear when they did the cannula because it wasn't where I put the numbing cream 🙄😅. I also had my blood transfusion where they hid the bag and also covered the whole IV tube in foil so I didn't see any blood. My team really went above and beyond for me, I feel so grateful at how accommodating they are. I've stayed an extra day at my parents so they can monitor me and I'm still tired but I did wake up at 3:30am and couldn't get back to sleep.

I just have one more set of bloods on Monday and my final brachy on Tues and I am free and hope this nightmare is over forever.

tothelefttotheleft · 07/08/2024 23:20

catmomof3 · 07/08/2024 19:14

Sorry double post.

I had my 2nd brachy yesterday and I didn't cry but I did swear when they did the cannula because it wasn't where I put the numbing cream 🙄😅. I also had my blood transfusion where they hid the bag and also covered the whole IV tube in foil so I didn't see any blood. My team really went above and beyond for me, I feel so grateful at how accommodating they are. I've stayed an extra day at my parents so they can monitor me and I'm still tired but I did wake up at 3:30am and couldn't get back to sleep.

I just have one more set of bloods on Monday and my final brachy on Tues and I am free and hope this nightmare is over forever.

I've gone back as far as the 12th of July and I can't see if you've said why you need a blood transfusion?

I may have to have one before radiotherapy as my haemoglobin is 88. I've been told oxygenated blood is important for radiotherapy.

TopOfTheCliff · 08/08/2024 00:00

@catmomof3 I can’t believe how far you have come. You are amazing considering how scared and upset you were at the beginning of treatment. You would not have believed us if we had told you that in a few months you would be posting to help newcomers. You deserve a loving pat on the back and a cheer as you are so nearly through now. Well done!

Lovemycollie · 08/08/2024 09:03

@catmomof3 Thank you, I had my PET scan yesterday.

I’m feeling a little calmer now I’ve had the scan. My Macmillan nurse called yesterday and said she would chase the results so I’ll hopefully not be waiting too long.

I must admit I’ve never heard of a lot of the drugs/treatments that you and other posters are receiving and finding it a bit bewildering atm. I’m really pleased you’re almost through it. X

catmomof3 · 08/08/2024 10:20

@tothelefttotheleft I had a blood transfusion as my haemoglobin had dropped to 108 and 110 is the minimum they like to do brachytherapy at my hospital so they agreed to let me have one during brachy. They wanted me to have it last week but I said I cannot do two cannula's in one week.

Not sure I feel any better from it, then again this weather is just making me tired in general.

londondragonite · 08/08/2024 10:40

@catmomof3 You've been so brave and come so far! How amazing that you are only a week away from the end of your treatment. Keeping my fingers crossed for you that it all goes as smoothly as possible.

londondragonite · 08/08/2024 10:49

@Zoopet What a relief. These things can be a huge worry before you find out what they are. I hope your radiotherapy goes well.

londondragonite · 08/08/2024 10:56

I have finally got my first oncology appointment later today and will find out the treatment plan. I have very little idea of what it might look like, especially since my diagnosis changed from invasive ductal to invasive lobular carcinoma after surgery. It's a weird one because it's unusual for lobular to be triple positive, but I believe that is still the case. I need to check.

It's also relatively unusual to get lobular BC when you're young-ish (I'm 41) unless it is genetic, so I am waiting for my genetic results with bated breath.

I really hope that I like and trust the oncologist as much as I liked and trusted my amazing breast surgeon - feeling so grateful for the beautiful job he did on my single mastectomy. I am so happy I went flat and that he really understood that I cared about how it looked aesthetically - very pleased with the results as well as the nice clean margins.

Shityshitybangbang · 08/08/2024 13:11

Got a call yesterday from my colorectal nurse. Had my first annual ct scan from my colon cancer. That was clear and everything else. But a suspicion cyst in my ovary, the surgeon says she can remove it. Just waiting on word for another scan. Totally gutted. I feel my life has ended. I have two young teenagers. Can’t stop crying. Googled it, yes I know. It says I only have three years. The nurse said she was sure it was a tumor. I don’t know what to do with myself. All my colon cancer stage 2 was all removed and that’s clear.

doublec · 08/08/2024 17:41

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This message has been withdrawn at the poster's request

Penguinsa · 09/08/2024 08:45

Glad it was good news Zoopet and hope radio goes well, I found radio very easy - just lying on a bed for 5-10 minutes and a breeze after chemo, didn't get any side effects, some people get tiredness which can peak 2-3 weeks after.

So sorry BangBang hope it turns out to be benign - I had a tumour that they said was suspicious and probable stage 4 and then after they said benign. Mine were also teens when diagnosed and its an awful age for that though DD coped well, if quite angry with me for having cancer at the time (now back to lovely), but DS fell apart. It might be worth phoning and explaining how distressed you are and seeing if they can help at all. If it isn't good news I am so sorry for you all and hope there are good treatment options.

That's interesting they said lobular is often hereditary when you get it younger - I got it at 48 x 3 which they still seem to class as young (but really isn't but in chemo most people were 20-30 years older and it was like being young again) but they said no to hereditary testing - may get it privately at some point as my DD worries about that though we have no family history of breast cancer, quite a few men in family dying young though but in theory should not be related. I always thought I was safe being female.

Nomorebear · 09/08/2024 12:09

Had my CT results today and it showed my breast cancer hadn’t spread.
Also got some different anti-sickness pills for my 3rd round of EC. Nearly half way through chemo.
I’m just so relieved my CT scan was clear.

dancingwhilstfacingthemusic · 09/08/2024 13:11

@Nomorebear good news re the scan and also that you’re nearly halfway through chemo.

@Shityshitybangbang thats tough news, I hope for better news for you soon.

I have a couple of weeks to wait for the results determining onward treatment. My lovely dad died after my first surgery 4 weeks ago and we have his funeral next week. It’s been a shit time but at least he didn’t know and isn’t having to see me go through treatment.

LemonDrizzle10 · 09/08/2024 15:27

@Nomorebear that’s such great news!
@dancingwhilstfacingthemusic sending unmumsnetty hugs, that sounds really tough going x

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somewhereonthe517 · 10/08/2024 15:50

It's been a while since I posted on here. Diagnosis of ER+ her2- BC in May. Rollercoaster of tests and scans before Mastecomy and full lymph node clearance 4 weeks ago. I had my results appointment on the 1st of August. I was told I fall into intermediate risk group so will need chemo, radio and hormone treatment. We sneaked a quick week away to the Dales with the dog thinking better crack on before treatment starts and Ive come back to my letter for my oncology appointment. It's not until the 5th of Sept which will be 8 weeks after my surgery..is that normal? You would think by now I'd be used to all the waiting but I'm worried they are leaving it a long time. How long did you guys go from mastectomy to starting chemo?

tothelefttotheleft · 10/08/2024 16:01

@somewhereonthe517

I had a lumpectomy on 21/10 and started chemo before the middle of jan. I had an infection which delayed me because the wound took longer to heal.

LemonDrizzle10 · 10/08/2024 19:55

I had op on 24 Jan and started chemo in the middle of March. Your body needs to heal following the surgery. Chemo destroys all new growing cells in your body, so in my mind your body needs to repair before you start. Radiotherapy needs to start within 2 months of finishing chemo I think. I finished chemo on 9th June and started radiotherapy on 7th August (last year).

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LemonDrizzle10 · 10/08/2024 19:56

@somewhereonthe517 hope you had a great time in the Dales with the dog x

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Nomorebear · 10/08/2024 20:31

I think I was 7 weeks out from surgery when I started chemo. They did say that I needed a gap to recover from surgery before starting.

Penguinsa · 10/08/2024 23:10

I had chemo starting about 3 months after mastectomy and 2 months after full lymph node clearance, that's after the optimal timescale but at least the full node clearance was all clear and just 1 sentinel node. I also had the oncotype test which caused 3 weeks of delays.

somewhereonthe517 · 11/08/2024 09:02

Thank you all for your replies. There is still so much I have to get my head around. @penguinsa was it your onco score that determined chemo. Only one node seems good. Unfortunately mine is in several.

Penguinsa · 11/08/2024 09:39

I was actually in the category for chemo from the Predict Breast model which showed 6% benefit over 10 years (so 6 women out of 100 will be alive at 10 years who did chemo relative to those who did not who would not survive with my scores). My hospital said under 3% they don't do chemo due to the risks involved which they calculate are equal to 3% over 10 years - this is things like risks to heart etc but this varies a lot by chemo. Normally 6% was straight onto chemo at my hospital though they said there were trials were 6% wasn't being put on (but suspect this is more about saving money than what is best). 3% to 5% get free oncotype testing on NHS. I was absolutely petrified of chemo and having a breakdown over it and the oncologist agreed to do oncotype at 6% but results came back high risk, chemo strongly advised and this took 3 weeks to get - UK version of test but NHS paid for it. I then decided I would do it and researched type best for heart and found weekly Pax was the best though the worst ones for heart tend not to be used anymore. I did manage to get it down to 4 cycles from 6 so 12 weeklies. My oncologist said that was controversial but some oncologists including her think the small additional benefit from 6 cycles isn't worth the extra side effects / risks. That is case by case though and the key thing in mine was I had surgery first which removed all 3 cancers, and chemo was for if cells had escaped they couldn't see.

I found chemo really awful tbh, not so much physically apart from losing a lot of hair and neuropathy but mentally especially from the steroids, there are more steroids with weekly and they made me incredibly ill. In the end they reduced them. But not every day was bad and it does end, it was 4 months out of my life with gaps for neuropathy. And now I am 2.5 years out with no reoccurrence. The difficult thing is there's no way of knowing if its doing anything with surgery first. I got through it by just viewing it as one day at a time and thinking I could stop at any point but I made it to the end much to the surprise of my oncologist. Its one of the hardest things I've ever done and not something I would be keen to repeat but I had 2 wonderful chemo buddies I paired up with (online) who helped me through and once through it I now feel if I can do that I can do lots of things. The trouble is cancer can come back in 20 plus years and I think this buys more time. Yes was glad just in 1 node though annoyed as 4.5 months earlier had said to first GP who dismissed in and on all scans not in nodes. I also only am given checks by mammo and ultrasound who only found one of the three cancers as follow up which is far from ideal. But lobular normally comes back at 5 years plus and even though if grows as a spiders web so is very hard to tell you have until stage 2 / stage 3 border I now would be more aware. If cold cap is offered to you (wasn't to me) there is a reasonable chance it will help with hair. Other symptoms just tell them and they do their best to control. Worth going to dentist now and getting anything needed done and extra fluoride toothpaste. Radio after was a breeze and hormone tablets have found OK though people vary on those. Surgery I also found OK and I have DIEP on Tuesday and weirdly looking forward to that.

Also got a cleaner once a month in chemo to do house cleans, if you can afford that strongly recommend or a weekly cleaner. Its very hard to get your head round, my head still isn't 100% round it as I can feel the effects every day still, only mildly and not so it impacts my life but I do think on balance it was the right thing to do though of course I may have had no benefit at all from it. I did ask my oncologist if she was in my position what she would do and she said she would do chemo, she was a wise and sensible woman so I trusted her. She also gave me a choice of lots of different chemos, that is unusual but it did help me feel in control though was like choosing between poisons. And in some ways its best to just get on with it asap. Keep a symptom diary as well as that will be a good guide. It does vary how people find it as well. Get a digital thermometer as well and take temp twice a day and call chemo line immediately if issues even in middle of night, that helps avoid the serious reactions. I also took handgel everywhere and stuck to outdoor activities and never got ill. Loads of anti sickness meds so even with a sickness phobia was fine on that, infact I took a lot less than they gave as was so mild. You don't need to get your head round it completely, just need to turn up. I used to wear velvet clothes so I could stroke them and it helped a bit. So sorry you are being recommended this.

somewhereonthe517 · 11/08/2024 17:49

@penguinsa. Thank you for all the info. I've looked at the predict breast tool. Much prefer the later version! I still find it hard to believe such a calculator exists. I have had some scary tests and I am still being checked - another post operative CT scan today, so I will have to take chemo and everything they offer as my thoughts are today. I fully expect to be floored by it. Watched my lovely sis in law go through it.
Sending you all the best for your diep. Hope it goes well for you!

Penguinsa · 11/08/2024 20:27

Thanks Somewhere and hope chemo is kind with you but kicks the cancer out.