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Cancer support thread #74 - come in, we're here for you.

(1000 Posts)
Hippiechick162 Wed 19-Feb-20 16:43:37

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 ishttps://www.mumsnet.com/Talk/general_health/3760336-Cancer-support-thread-73-come-in-were-here-for-you

Current members, please do introduce yourselves smile

OP’s posts: |
Hippiechick162 Wed 19-Feb-20 16:50:13

My intro

I'm 38 years old. Found a lump in December (just after Christmas). Diagnosed with DCIS on 6th January where they then found 7more pockets of invasive lobular cancer.

Due to have double mastectomy and DIEP reconstruction surgery on 27th February then chemo and rads following (hoping they're going to change their minds on this but not looking likely).

I have found so much support on the previous thread ( thanks to you all) and didn't want it to come to an end when op said we were already up to 970 posts. So here is the continued Patience Inn ready to support xx

OP’s posts: |
Trumpton Wed 19-Feb-20 17:08:30

Ah thank you @Hippiechick162

My intro from September (?)

67 ( now 68 ) 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 .
———————- ——————————-
Update ...
Now finished chemo and climbing towards mastectomy and diep reconstruction at Wythenshaw in March .
Followed by another op 6 weeks later to lift and reduce healthy breast to match .

peaceanddove Wed 19-Feb-20 18:12:33

Hello!
Three weeks ago I had a very shock diagnosis of DCIS with some invasive ductal carcinoma within, spread over an 8mm area in right breast. There was no lump It was picked up on my first routine mammogram, but in exactly same area from where I had a fibroadenoma removed twenty years ago hmm

Because I'm quite big boobed and the IDC very small, the surgeon recommended I have a lumpectomy followed by immediate Therapeutic Reduction Mammoplasty. So basically a boob reduction and lift which is a weird silver lining in this nightmare. Apparently I had 300g of tissue removed!

I had the surgery yesterday. The surgeon also removed my sentinel lymph node eventhough the ultrasound showed my nodes to be clear. I go back in two weeks to have dressings removed and get the pathology results. If I have clear margins and no node involvement then I will just need fifteen sessions of RT followed by Tamoxifen for 5 years.

None of it feels real at all, especially as it's all happened so quickly. It's like a dream.

Skap Wed 19-Feb-20 19:05:24

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 sentinel 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 had 12 weeks of weekly Paclitaxol followed by 15 sessions of radiotherapy which finished last week. Now I have 13 more doses of s Herceptin given every three weeks.
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.
One thing I have noticed about cancer is that many people find that at the end of treatment they feel not elated, but down. Months of intensive medical treatment and suddenly you feel a bit on your own. Friends and family think it's all over and expect you to bounce back to normal. It's not quite so simple.
The thread was nicknamed The Patience Inn sometime last year when many of us were feeling very poorly. There is usually someone to chat to day and night, and there have been some long nights - in hospital, worried or steroid induced insomnia.
I have posted a lot over the last 9 months and it has helped. I will pop in and out but not as much now, happy to answer questions to those just starting.

Nonotmenori Wed 19-Feb-20 19:13:31

My intro,

I'm 37 single mother of one. Found a lump in my breast December 1st. After having biopsy, 2 mammograms and an ultrasound waiting all over Christmas I get a call after my birthday from another hospital saying I've been referred to them and I'm to come in the next day.
Got diagnosed with stage 1 BC grade 3. Asked for the genetics referral as cancer runs in my family and worried about my dc. Waited for it only to go in and be told I'm. Not high risk. Went back to the breast unit in on Thursday Jan 30th to be told I'm having surgery on Tuesday 4th.

Surgery went well. I was discharged the same day. I had left breast wide local excision and sentinel lymph node biopsy.

Went back Friday 14th Feb for results - 18mm grade 3 invasive. They found another two tumours inside it. I think there was one in my milk duct that was non invasive. They removed 5 lymph nodes and all were clear.

I was scheduled for more surgery Tuesday just gone, but they called Monday night and cancelled saying I'm not having it as the lab results are ok? I'm awaiting the letter so I can fully understand it. I'm to have 3 weeks of radiotherapy, but because my her2 is still inconclusive (they said I'm a rare case I'm in the grey area) I must wait and see if I'm to have chemotherapy as that will need to be done first.

I can't have anymore children for at least two years. I'm not allowed the pill or anything with hormones. I'm to take tamoxifen for at least 5 years.

I am going back to work on Monday as I am fed up and not even sure if I'm being paid or not. (Currently in probation period)

I honestly have just carried on as if nothing has happened. You wouldn't even think I was sick I certainly haven't acted like I was. Even as I was about ti have surgery I was laughing and joking the entire time. I'm grateful that I found the lump when I did and acted on it. The way I've told myself is that it's boobs and I can lad them and it's just hair. I can wear a wig. I wouldn't be so lucky if it was an arm or a leg so I'm grateful.

That's me xx

meercat23 Wed 19-Feb-20 19:44:47

Hi All,

My intro.

Diagnosed last March with a grade 2 tumour. Surgery was wide local excision with sentinel nodes which showed clear margins and no spread to lymph nodes. The tumour was oestrogen* and Her-2 + so needed 9 weeks of chemo (Paclitaxel), 18 sessions of Radiotherapy and 18 three weekly sessions of Herceptin. Today I completed 14/18 so just 3 more to go! I also get Zolodronic Acid infusion every six months for 2 years. I take Anastrazole and will be on that for at least another 4 years

So I am almost through the hospital based treatment. It feels as if the end of that is in sight. I entirely agree with what Skap said above about the end of treatment. You feel you should be OK about it all but sometimes it doesn't feel that easy!!

The most difficult time of all though is the beginning when you have so many questions, you don't know what is going to happen to you and you are waiting for answers, results and a treatment plan.

I have found this thread and its predecessors to be one of my most important lifelines. I am so grateful to all of those who have been with me along the way. I don't spend quite so much time in the Patience Inn but I will still be around to offer and receive support.

Best wishes to all of us.

romola Wed 19-Feb-20 19:57:52

My intro
I'm 37 mother of two. I found a lump that swiftly grew to what seemed like a grape. I was sent for a biopsy and was really shocked when they told me I had IDC and had surgery to remove the lump. Unfortunately the margins weren't clear and there was a separate dcis hiding under the original lump so they decided to have another go. I'm not sure it wasn't because the surgeon was hoping for another box of chocolates.
I'm waiting to meet the oncologist now to find out what comes next. I've been told they want to discuss chemotherapy, I'll definitely be having radiotherapy and hormone therapy. I'm worried about what this will mean for me.
Good luck to everyone recovering right now, you are all amazing.
X

BitOfFun Thu 20-Feb-20 01:02:49

I'm 46 now, a year older than my first symptom. Both my children had just flown the nest, and the younger one (who is non-verbal and severely autistic) was safely ensconced in supported accommodation after being looked after at home for 19 years. It was important to me that she start to develop an independent life in the community, because obviously one day I wouldn't be here for her, and I didn't want some awful emergency social work placement in the event of my death.

Obviously, I expected that to be a long way in the future. Besides, my (genuinely) Darling Husband and I were looking forward to all sorts of plans together after many years of sometimes tough caring.

On my 45th birthday, I was lifting our new puppy into the back seat of the car when I experienced the most excruciating sharp and intense pain in my back. I hobbled my way through the next few weeks without seeing the GP, assuming that I'd be told to lose weight and exercise etc etc.

It wasn't until about three months later that I noticed one of my nipples had inverted and couldn't be coaxed back out. THEN I went straight to the GP, and was referred within a fortnight to the breast clinic. I really wasn't worried- I'm a glass half-full kinda person, and I assumed that they were just being cautious. I was so blasé about it that I attended the appointment alone. At the end of a long afternoon, a very sympathetic doctor told me it was definitely cancer, but I'd probably have surgery and he would help me.

I think it was the following week that the results of tests with more information came through. Again, I went alone because I wanted to know everything before I told my family. They told me that it was Stage 4, which means it had already spread past the lymph nodes and into other areas of my body, including my spine. What I had assumed was a trapped nerve on my birthday was actually my vertebrae crumbling, and the pain was compression of my spinal chord.

There would be no surgery, because there was no point. They couldn't cure me, just treat my symptom and try to slow the progression with radiotherapy and drugs. My first reaction was to ask if there was still any point getting new double glazing the following week- I make tasteless jokes in the face of bad news, what can I tell you grin. Fortunately, they said yes, and they would look after me for as long as possible.

I'm still here, nearly 18 months later. Having problems with my lower jaw and losing teeth, but waiting to find out for sure if it's a particularly nasty side effect of the drugs, or the cancer starting to spread. It feels like all I do is attend hospital appointments, and the rest of the time I am hazy and tired from the strong painkillers.

Still I hope though- to feel well enough to take a holiday, perhaps, to stick around for as long as I can, so I can see my beautiful girls blossom in their adulthood, and spend time with my broken-hearted but incredibly supportive husband. I try not to be bitter, and just put my energy into staying alive as long as I can, and appreciating all the wonderful things in my life. The women on this thread is one of those thInes.

BitOfFun Thu 20-Feb-20 01:09:18

*things

Bloodybridget Thu 20-Feb-20 09:45:38

Thank you Hippiechick for starting a new thread.
I'm 65 and live with my (female) DP.
I had a hysterectomy (and every other gynaebitectomy) in May last year for suspected ovarian cancer, diagnosis was stage 2, grade 3 carcinosarcoma, which is "rare and aggressive", hence the grade, but fortunately found early. Finished chemo at the end of October and had a clear scan a month later. I have my first three month check up in early March, I'm not worried as I'm pretty sure I'm still fine. Getting back to strength and fitness which is wonderful.
These threads have been a brilliant support for me.

peaceanddove Thu 20-Feb-20 09:49:24

Good morning girls x

I had my surgery on Tuesday. Ever since my fingers and feet are a bit swollen, is this a by product of the operation?

Bloodybridget Thu 20-Feb-20 10:04:38

And to catch up with others -
@Nonotmenori I guess it's good that the lab results were OK and you didn't have to have more surgery, but still being somewhat in the dark is hard? Hope going back to work is OK - can you take it a bit easier, even if you are on probation?
@Trumpton lovely that you were able to have nice times with the DGCs. Hope you feel well enough to make the most of the time before surgery.
@Squiffy01 I'm so sorry your chemo was delayed again, that is really crap. In my experience the injections work wonders, so with any luck you will be fine next week. In the meantime, a virtual hug for you ((()))
@Hippiechick162 not too long to wait for surgery - how are you feeling about it? Have you ever had an op before?
@romola, hello, welcome, commiserations. As others have said, waiting for results and treatment plans is grim. Would be great if you don't need chemo, but whatever happens, you'll get lots of support here, and there are so many breast cancer patients to advise you.
@peaceanddove glad you are home after the surgery, hope you're fairly comfortable. It does seem odd that you've gained a bit of weight, but maybe it's common . . have you been peeing much? Are your fingers still swollen?
@Skap, I'm just wishing you many many years of clear mammograms and good health. You've been a brilliant support for me and so many of us here. flowers
@BitOfFun I think of you every day and hope you do have both time and a manageable quality of life to see your DDs get further on in life.
@meercat23 so close to the end of treatment! Which as you say isn't always the lovely, relaxing time one might expect. But I hope you do feel some real joy in the next couple of months.
Waving at everyone else. I'll put the kettle on, shall I?
Suggestion for all of us: let's not give up anything for Lent! Except maybe putting up with bullshit!

Piggles39 Thu 20-Feb-20 10:18:44

Thank you @Hippiechick162

My intro

I’m 43 and was diagnosed with inflammatory breast cancer in my right breast in October which had spread to the lymph nodes under my arm. It’s HER2+, borderline ER+ and PR-. There were several masses in there, the largest of which was over 5cm (yes cm not mm and I have no idea how I didn’t spot it sooner...).

I’m having chemo before surgery then rads. So far I’ve had 4 rounds of EC and am now 9/12 through paclitaxel (with herceptin to continue for 12m in total).

I won’t know for a couple of weeks when I finish chemo and they do more scans etc exactly what surgery I’m having so that’s giving me a bit of a wobble as it gets closer. However will be glad to be done with chemo as the side effects have been pretty grim and I’ve barely been outside except to the hospital in weeks!

Hippiechick162 Thu 20-Feb-20 11:23:48

Hello everyone, it's so lovely that we are all back and supporting each other. I'm certainly not one for "stay positive" and all that but the way everyone is makes me positive!
@Bloodybridget the only other surgery I've had was a c section for my 3rd child. Really quite nervous but more so about the impact on my dh. He's great but a really rather insensitive woman said to me the other day how's mr hippie doing? You're really lucky because 20% of men leave women after a diagnosis of cancer because they can't hack it. Remember to take care of him. I was like great another thing to look after!
@Nonotmenori - hope your work are going to be supportive, probation or not you'd hope empathy comes in.
@peaceanddove the bcn told me yesterday that I'll need to remove my jewellery before surgery (especially on the side where the nodes are being removed) due to the swelling. Maybe check with them?
@BitOfFun wishing you luck. Hope it's not spread and that if it is a nasty side effect it can be rectified.
@Trumpton spoke to the surgeon yesterday again. She is brilliant and I'm sure she will do a great job for us both. She's really keen to make sure that it's a good looking outcome not just that it gets rid of it all but that you still feel feminine after. Cannot speak highly enough about her.
@romola sorry you have to be here but as you can see everyone will try to help. Good luck with everything
@Piggles39 mine was over 5cm as well and felt like it appeared overnight. Oddly though that one wasn't as much of a concern as the "hidden" lobular cancer which doesn't always show up on mammograms so if I hadn't found the lump I wouldn't know and I'm 11 years off the allowed mammogram age. Good luck.
@skap and @meercat23 take care. You have both been a brilliant source of support. See you when you pop in. Good luck
Sorry if I've missed anyone. Seen as though @Bloodybridget is putting on the kettle I'll get the biscuits. Xxx

OP’s posts: |
Bloodybridget Thu 20-Feb-20 11:40:11

Jeez @Hippiechick162 that's got to be a contender for What Not to Say. Shortbread finger for me, thanks.

peaceanddove Thu 20-Feb-20 11:41:44

Does anyone know how long these pesky cancer cells will have been around before they got noticed? My area was 8mm so wondering how long it would have taken before it became noticeable?

meercat23 Thu 20-Feb-20 11:43:36

Hippiechick I am just shock angry at what that stupid woman said to you about needing to look after your husband. WTAF!!!

One day one of us needs to write an article of things it really is not helpful to say to people you are going through cancer.

BitOfFun Thu 20-Feb-20 11:46:19

That is a brilliant question, peaceanddove, one I've often wondered about. I've found this so far.

Squiffy01 Thu 20-Feb-20 11:46:43

Thanks hippie chick for a new thread.

I still feel fairly new to this thread but I guess I am clocking up the months now.

I’m 32 and have an 18 month old. In November I was diagnosed with bowel cancer. Plan is 4 rounds of chemo before rescanning in hopes it has shrunk enough for surgery. I have had 3 of 4 with the 4th one being postponed twice now due to me or my bloods not being good enough to go forward.

peaceanddove Thu 20-Feb-20 12:59:34

That made for interesting reading @bitoffun thank you for that. It's surprising how many women are over diagnosed with BC though, but I assume that only means women with DCIS? I don't see how you can be over diagnosed with an invasive breast cancer? I've read that the cancer cells might have been present from between 5 and even 15 years!

BitOfFun Thu 20-Feb-20 13:19:39

Yes, they are talking about the women who have misbehaving cells which the immune system recognises and cleans up before cancer has a chance to develop.

I think the reason that my cancer was missed is because it's a tricky type- inflammatory breast cancer. The prognosis isn't so good for that, as it has usually spread before detection.

CointreauVersial Thu 20-Feb-20 13:21:20

Hello, new thread! My story:

Just turned 53 (on Monday), have three teen/20-something DCs, lovely DH, have always been fit and well....I went through the menopause very early at 46, so it was a definite red flag when I had a couple of sudden bleeds on holiday at the end of September last year. Didn't hang about, straight to the GP, diagnosed at the end of October with Grade 1 Stage 1B endometrial cancer. Had a total laparoscopic hysterectomy in November, followed by 25 fractions of radiotherapy and 2 of brachytherapy - this all finished last week.

So....I'm done....or am I? I feel very lucky because the cancer was caught early and was kind enough to grow in an organ that I have no further use for. I recovered quickly from the operation, and have had very few side effects from the RT (besides a dodgy gut). Work, friends and family have all been marvellous. Now I need to get back to normal life, and it feels weird without this....THING....dominating my waking thoughts and filling my days with discomfort and inconvenience. I'm hoping to be back on an even keel by the time my first follow-up comes around in mid-March (need to dig out my delightful dilators before then - oh, the joys of gynae cancer), and will pop into the thread every now and then to see how everyone is.

BoF - your story brings a tear to my eye every time I read it. Your positivity is unbelievable.

iVampire Thu 20-Feb-20 13:31:52

Thank you for the new thread.

I am an intermittent contributor. I have leukaemia (CML) and the regime for this blood cancer is rather different from the issues most posters here are having or have faced. I was diagnosed out of the blue in 2018 (from a blood test for something completely different) and after brief chemo was put onto targeted drugs. The first, Imatinib, worked, but only just pushed me into functional remission (terminology is not quite the same when you’re not dealing with a tumour and are not aiming to cure but to suppress), and I was bumping along, essentially disease free but with slightly undesirable levels of leukaemia cells.

Just before Christmas, I was switched to a second line drug in the same family. I seem to be doing OK on it, and the main blood markers are disease and side effect free. Either next month or the one after I shall have the key blood test to show if the desired deeper suppression has been achieved.

So I’ve been grappling with slightly different side effects, which fortunately seem to have largely settled.

Which is good as I’m the stereotype perfect twat who irritatingly gets mentioned a lot to the newly diagnosed ‘oh I know someone who had cancer and she runs marathons now’. I have a charity place in this year’s London Marathon (and I run a lot anyhow, sometimes in a lacie top (not real lace, trompe l’oeil)

I’m in my 50s, with teenage DC and a newish puppy

iVampire Thu 20-Feb-20 13:39:07

‘ Does anyone know how long these pesky cancer cells will have been around before they got noticed?’

I asked my consultant this, and the answer is that they don’t really know. They suspect it’s not for long, because there have been patients who have had clear blood tests (for other reasons) not long ie weeks not months) before diagnosis, as mine’s a chronic one it may be slower moving, and the three months or so when (with the benefit of hindsight) I was beginning to show signs probably (but not definitively) marked the start. There’s no evidence to suggest it grumbles at a lower level before gathering pace (also none to exclude that, as no-one runs the expensive and highly specialised test to seek level of leukaemic cells other than to check if ‘remission’ is deep enough.

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