Cancer support thread #73 - come in, we're here for you.

(972 Posts)
Trumpton Wed 04-Dec-19 16:54:44

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is HERE

Current members, please do introduce yourselves smile

OP’s posts: |
Trumpton Wed 04-Dec-19 17:03:31

My intro from September (?)

67 years old , fit and healthy .
Routine mammogram early July showed some calcification in breast duct so vacuum biopsy done mid July .
That showed DCIS and so wired guided excision done on the day after we got back from working a festival in France .
The biopsy from that showed there was not a clear margin and took me from grade 0 to grade 2.
Repeat operation and sentinel lymph nodes taken early September.
Meanwhile the arm pit proved troublesome and burst open during night ! Eep !
Refused to stop trickling so armpit got manky . Then restitched and back for results ( please ) and Friday for physio as some cording .
It’s the gift that just keeps giving !
Will need 15 sessions of radiotherapy given over 3 weeks in Liverpool so will have to stay away from home for that .
Waiting to hear if I need chemo .

Quite a lot changed from October . The mastectomy was booked for 26th November in Manchester but the oncologist from Clatterbridge advised the week before that chemo was advisable first as invasive elements found .
I have have had two sessions of 12 paclitaxel and will have my first Herceptin on Friday ( every 3 weeks for a year)
I tried cold capping but my temperature plummeted too far despite many blankets and a hot water bottle so have been told to stop.
No side effects so far apart from loss of appetite and slight queasiness .
The support from these threads have been invaluable .

OP’s posts: |
Bloodybridget Wed 04-Dec-19 17:22:03

@Trumpton thanks for your message and for starting a new thread!

I'm 65, diagnosed with ovarian carcinosarcoma in May, stage 2, grade 3. Had the full works hysterectomy, then chemo which I completed at the end of October. Just had results from a CT scan which were fine, all clear. I'll have check-ups every three months for two years.

Trumpton Wed 04-Dec-19 17:33:28

Oh I am so thrilled for you . The best news for Christmas !
Do you feel you are getting over the side effects and do you get to see your dgc soon ?
Been mooching through the previous thread , what a long time since that first routine mammogram for me .

OP’s posts: |
iVampire Wed 04-Dec-19 20:53:06

I rather dropped of the last thread, but am still around.

I have leukaemia (CML) diagnosed just over 2 years ago. I’m on a targeted inhibitor drug, which has worked, but not as fully as they would hope. (Suppression level need to be anything which starts 0.0..%, and although I did get down to 0.09% about this time last year, it’s kept hovering at about 0.13% for months.

So more investigations (do I have a second mutation?) and health checks (ECG, cholesterol) as they decide which second line drug to switch me to. Appointment is in a fortnight.

I’ve been feeling remarkably crap about this. I had thought I was the textbook perfect response, and now I know I’m not.

I keep stubbornly telling myself it could be a lot worse. The current drugs have worked, and I am in perfect health (other than having incurable blood cancer, of course). They want to try ones that will work even better.

And a couple of years ago there was only one second line drug. Now there’s a choice of three (and even more in the whole ‘family’). So nothing whatsoever has changed about my prognosis. It’s just that I’m feeling a ‘feel bad factor’ right now

Oh, and I started the week with repeat bloods because ‘there was a problem in the transport of your sample’ (code for “we dropped it”!)

I’m in my 50s with teenage DC. Neither of whom I have yet told that change of drug is on the cards. One good thing about teenage self-absorption is that they haven’t even noticed the extra hospital visits!

iVampire Wed 04-Dec-19 20:53:57

Lovely news about your results bridget !

Bloodybridget Wed 04-Dec-19 22:31:55

iVampire that is a hard place be in. Please do stay in touch here and let us know how you're getting on.
Trumpton we are going to Scotland for a few days to see the younger DGCs on Saturday. The younger one has a birthday on Monday. I feel pretty well now, I guess it will take a while before I get back to being as fit and strong as I was before surgery (not saying I was Superwoman or anything!).


Toofaroutallmylife Thu 05-Dec-19 00:02:59

Waving at iVampire - I was mainly active on the threads from January to June this year, when I think you were a more frequent poster. Sorry that you’re having a crappy time at the moment - I hope you dip in as needed flowers

I don’t post very often these days, but keep an eye on the thread in the unlikely event someone pops up on Team Melanoma or Team Vulva (in which case I’m your woman).

Diagnosed with malignant melanoma on my vulva in January this year - had more than half of my vulva (including my clitoris) and part of my vagina removed and skin grafted.

Clear margins for invasive cancer but some melanoma in situ at the margins. Had adjuvant immunotherapy (Pembrolizumab) but it gave me liver toxicity, so am on steroids to try to sort that - currently weaning off steroids verrry slowly to try to minimise the withdrawal effects,

Had follow up scans last week - all clear! Yay

Lots of love to everyone going through treatment, or anyone waiting for results x

Zorgothslugofdoom Thu 05-Dec-19 01:14:13

Hi everyone, just seeing if anyone is up? Just been admitted to the Christie with chest infection and high temp. Feeling very sorry for myself, as had to leave my husband and 6 year old at home, and feel a bit upset and overwhelmed by myself. I am absolutely boiling hot! Was inA&E on Monday, when I think the chest infection was brewing, but no temperature then. Just feel awful now!

Bloodybridget Thu 05-Dec-19 03:15:11

@Zorgothslugofdoom oh poor you, how horrible! Hope you are asleep by now, and that you don't have to stay in long. Did they say anything about that? Maybe they will let you go home once your temperature is normal? Are you on IV meds?
It is very bleak being taken into hospital alone. Is there anyone who could come in to see you during the day today (assuming your DH will be at work)? I would, but I'm in London! Have some flowers anyway and a nice brew.
Hope you feel a bit better by shift changeover!

Trumpton Thu 05-Dec-19 03:27:56

You poor soul , how horrible . I hope you feel better soon . I keep meaning to make myself up a grab bag of hospital essentials .i hope you have everything you need with you and you are getting some sleep.
I am on my 3rd wake up of night . Insomnia can do one !

OP’s posts: |
Zorgothslugofdoom Thu 05-Dec-19 05:04:01

Thanks Trumpton and Bridget. Slept for a bit, but up again now. I looked like I was moving in for a week when I arrived, as we panic packed a suitcase to bring with me! Glad I thought to bring my charger and iPad! Still on iv antibiotics and a chest xray is planned for the morning. It will be the 2nd time in a week that my son will wake up to find I've disappeared to hospital. I feel so guilty and sorry for him. Fingers crossed home later today.

yoshimi Thu 05-Dec-19 07:46:27

Hello- just popping in to say how happy I am to hear your news, Bridget!

I’ve just been a bit of a lurker mainly after being diagnosed with stage 1a cervical cancer. 8 days post- hysterectomy now.

I hope the hospital sort out your infection properly zorgoth that sounds like the last thing you need!

meercat23 Thu 05-Dec-19 08:07:13

Zorgo I hope they manage to sort out the infection quickly and that you are able to return home very soon. Meanwhile I hope they are keeping you very snug and comfortable.

digerd Thu 05-Dec-19 08:15:38

@ Cointre
The recovery period I think is different for everyone and as I am 75 and suffer from several 'comorbidities' - heart and lungs , plus physical things like lumber pain mainly slipped discs and sciatica.
I had already started to lose weight/muscle strength for several months before my bladder cancer was discovered and was housebound with urinary pain and overactivity before and after the Radotherapy. I was warned by one urologist that the treatment could make my symptoms worse.
Also I have 2 different cancers in my bladder- one muscle invasive which was the reason for the Radiotherapy and the other was/is CIS on the lining of the bladder which needs treatment under GA and has been left to do what they are not sure for a whole year.
All in all I am not only fed up that I had an echocardiogram recently to see if my heart is OK after the stress of the rads and after 7 weeks and DD phoning them and getting no reply, She eventually managed to send me info that the letter is in the post saying I am OK to have the GA if I do not have a wheeze of course.

So just waiting again for this letter or one that gives me a date for the biopsies on both cancers. I cannot believe it as a year since diagnosed and still not finished with the treatment.confused

digerd Thu 05-Dec-19 08:44:27

I did not get the side effect of rads of "dire rear" either, just the opposite.

redspook Thu 05-Dec-19 10:39:16

Hi all,
I am 59 and was diagnosed with endometrial/cervical cancer Stage 2b at the end of May this year.
I had combined chemo and radiotherapy (5x cisplatin and 25x rads) followed by 4x brachytherapy ending at the end of August.
I went through hell during my treatment but have recovered well.
I have some issues with bowel unpredictability and have recently developed some back pain which is bothering me as I don't know if it's related to the cancer or not.
I had "response to treatment" CT and MRI scans yesterday and am now waiting for results .
To all newbies and lurkers - the support on here is amazing and has kept me going whether I have been posting or not.

SisyphusRocks Thu 05-Dec-19 10:42:00

Hello all.

Was diagnosed with a type of bone cancer known as Chordoma - which is situated at the base of my skull - a few weeks ago.

Am exhausted after being sent from pillar to post re appointments and then trying to deal with life in general including the emotions of others.

Have got a biopsy next week and quite frankly, don't feel anything at this point. People keep telling me they're amazed at how calm I'm being, but it's not calmness, it's numbness.

redspook Thu 05-Dec-19 11:14:59

Forgot to say -fantastic news Bloodybridget, so pleased to hear it.
Welcome Sisyphus, sorry to hear of your diagnosis. I know the numb feeling well, and like others I felt more able to get my head around it once a treatment plan was in place. I really hope that you get some progress on that score very soon.

SisyphusRocks Thu 05-Dec-19 11:17:12

Thanks redspook It's the uncertainty that's the worst thing - especially when everyone's firing questions at you and you don't know the answers.

My 19 year old isn't coping very well and I can't tell her if I'll be okay because I don't know myself.

NaomiFromMilkShake Thu 05-Dec-19 11:48:24

Round two yesterday, in work today, have made some rookie errors, nothing to affect base line, but going home soon.

Happier to me in and have it done and I am now not due back until Monday.

Thank you for starting this thread.

CointreauVersial Thu 05-Dec-19 12:49:38

Thanks for the new thread.

I was diagnosed at the end of October with an endometrial tumour, following some post-menopausal bleeding. Had a total hysterectomy three weeks ago, have bounced back really well, feeling full of beans and planning to go back to work tomorrow. Histology results indicated the cancer was stage 1B, grade 1, but with "evidence of lymphovascular invasion" so I'm due to have a course of radiotherapy and brachytherapy straight after Christmas. Dreading it. Still haven't told several key people.....working up to it.

@Bloodybridget - excellent news at the end of the last thread!

@SisyphusRocks - I totally get the "numb" feeling. I haven't shed so much as a tear since being diagnosed, in fact I've been downright cheerful, but I did find waiting for a diagnosis (and for things to happen) really stressful.

ellenanora5 Thu 05-Dec-19 13:14:53

Hi everyone

Was diagnosed with breast cancer last summer, lumpectomy and lymph node removal, don't get me started on the under arm problems post surgery, didn't need chemo, had radiotherapy for a few weeks which unfortunately resulted is some bad burns but they have finally healed, have had bone scan and just had chest abdomen and pelvis cat scan, so have to wait on results from that, am on anastrazole and calcium for the next few years.

Bloodybridget I'm thrilled for you that is great news grin

Thanks for the new thread Trumpton

Zorgo sorry to hear you are in hospital, fingers crossed you won't be there long.

Skap Thu 05-Dec-19 14:01:43

I'm 61, retired and live with DH and have two adult sons in their 20s.
I was diagnosed with grade 2 invasive breast cancer in July after finding a lump. Routine mammogram a year earlier had been clear. It's ER negative HER2 positive.
I was initially going to have chemotherapy followed by surgery but there was a change of plan and the surgery went ahead in August. I had a wide local excision and sentinal node biopsy. The result was clear margins and no node involvement. The cancer was found to be much smaller (7mm instead of 13mm) than first thought but was grade 3 and embedded in 33mm of DCIS.
I am now on week 9 of 12 weekly chemo therapy, Paclitaxol and will have radiotherapy after that plus Herceptin for a year.
This thread was great when I was first waiting for appointments pre-diagnosis and has continued to be a huge source of support and information.

Bloodybridget Thu 05-Dec-19 14:11:43

Thanks very much everyone for nice messages.
Zorgoth I do hope you get home today, to see your DS and DH again. Useless to say try not to feel guilty - so hard with little ones.
redspook I hope the scan results are good, have you been able to ask anyone about the back pain and bowel issues?
Hello and welcome, Sisyphus, sorry to hear of your diagnosis. It may feel easier when you have had some more investigations and know what is planned by way of treatment.
Yoshimi, how are you feeling post hysterectomy?
Naomi congrats on getting round 2 over with.
Good wishes to Patience Inn regulars and newbies!

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