Roll up, roll up and join the lacies for CANCER SUPPORT THREAD 59 - anyone with cancer is welcome (and those awaiting test results)

[WhatWouldLeslieKnopeDo]

Hello everyone,

This is the cancer support thread, which has been running for many years under different names. Most posters have breast cancer, but various other cancers are represented too! Whatever cancer you have, feel free to join us. We also welcome those who are awaiting test results to find out whether or not they have cancer. We know how difficult the waiting can be and we are happy to hold your hand. Hopefully you won't need to join us permanently

Feel free to ask any questions. There will usually be someone who knows the answer or will know where you can find it.

Whatever you do, stay away from Google!

You can post anything you like here. We don't mind swearing or complaining or angry ranting. We aren't brave or inspirational and you don't need to be either. Nobody signed up for this, but we support each other as best we can

The previous thread is here

sandyplains sounds like you have had a rocky road so far, sorry to hear that they keep finding more each time they check you. As to whether to reconstruct or not I think at the end of the day it's such a personal decision and only you know what is right for you.

Because I'd had radiotherapy in 2015, I was not recommended to have an implant. I knew that - for me - living without a breast would be very hard and I wanted an immediate recon. I had the DIEP op and spent just 4 nights in hospital (that's pretty standard I think at the Marsden). I had 2 abdominal drains and one breast drain and i had all 3 out by day 3 so came home with just the dressings. Yes it's tough and exhausting at first but for me totally worth it. I was on holiday over Easter and felt so comfortable with my new body I wore a bikini (with big pants that covered my scar!). I would go through it all again if I had to but for other folk the thought of all the surgery and scarring is just too much. I wish you luck with your decision

Hi Sandy I was diagnosed with high grade DCIS in the left boob near the nipple age 34 1st March. I was referred for an MRI which showed a 55mm area and possible lymph node affected. Ultrasound, CT, Bone scan and weeks later lymph nodes looked normal and I opted for a mastectomy rather than further biopsies under MRI and no immediate reconstruction as it was stressed to me that if they found invasive cancer and I needed radiotherapy the recon might not heal well. After the mx and SN biopsy no invasive cancer was found although the whole 50mm was DCIS so no further treatment required. According to my surgeon I can therefore be referred to start consultation for reconstruction 3 months after the op, which I'm feeling like I will delay, probably for about 2 years. My thinking being a) it really doesn't look that bad and had been quite easy to disguise (and I have reasonably sized breasts) b) the op (especially lymph node sample) felt like a major upheaval to that area and I really just want to leave it alone for a bit and c) I have a 2 and a 5 year old. Dealing with the 5 year old post op was a lot easier than the 2 yes old and I want to wait until she's bigger and doesn't need lifting etc before putting myself even more out of action for a bit than I have been this time.
Healing has been relatively straightforward, the drain came out day 5 and the dressing off 2.5 weeks after. The scar is very neat, looks a bit like a deep scratch in the middle and a bit sort of gathered at the edges. I did develop a seroma but it's 50% reabsorbed by now I'd say. I'd recommend visiting the Amoena website and following their instructions for measuring yourself for a post surgery pocket bra as this will give you an idea of what size softee to go home with. The nurses who fitted me were not BC nurses and a bit "that'll do". Also look up "knitted knockers" who make knitted boobs free for ladies who have had a mastectomy and post them out. You can also get knitting patterns from their website. I was sceptical but my mum knitted me one and it is much better than the foam ones from the hospital both in shape and feel. Husband and friends were impressed and I am converted.
I also got some excellent advice from a friend who is a theatre nurse in a plastic surgery practice in the US, which have really helped with my recovery and I am more than happy to pass on if you would like, on here or Pm.
As regards the numb boob, there is quite a lot of numbness anyway. My armpit is numb and so is my chest above the scar for about 2 inches and below for about 3. A friend who is about 18months down the line on this said some will return but some will stay. The oddest thing about it is forgettingthe boob is not there and dropping stuff you try to hold to your chest under your arm and the lack of fullness in the upper boob area.
I don't find it too bad to be honest, at least in part because it's temporary and I know I have a plan to fix it but also because it's been easier than I expected to disguise.
I hope that helps but feel free to ask any other questions if you want to and I'll happily let her away.
Waving to all the Lacies with love and gratitude still xxx

Let Her? I have changed that to blether twice. Stupid bloody phone.
Wishing that is awesome news

Thanks Minty and Deutsch for sharing your experiences.
Minty - I am pleased that your experience was worth it. Coming home after 4 days and having the drains out after 3 sounds like a great recovery. I was told that I should expect to come home with drains after a minimum of 5 days in. I guess I should plan for the worst and hope for the best in relation to coming home and with dressings only (although this could pale into insignificance compared to getting the pathology results - perhaps my preoccupation with my recovery from surgery is my way of deflecting fears about what else they might find!) Do you have any tips about how to speed up the recovery?
Deutsch - I would love any information you have to share from your theatre nurse friend. I would like to do all I can to get back on my feet as soon as possible.
Hello to everybody else btw

Hi Blossom and welcome; we hope you won't be staying long! Waiting for tests and results is awful. Golden rules are 1) Do Not Google and 2) Read Amberlight's summaries at the top of the thread. Let us know how you get on, and feel free to rant here. Best of luck. xx

sandyplains i had my mastectomy almost 2 yrs ago - im shocked to be writing that!

immediate reconstruction wasnt offered to me, i have to say i sailed thru the mastectomy with no problems, very little pain and healed well after - i still have loads of nerve damage tho with numbness on my side

i was due to have reconstruction surgery last october but the pre op scan flagged up my left kidney had gone peculiar so everything boob related went on hold while that was investigated.

i have to say the kidney operation really hit me hard and its taken me a while to recover but im now thinking if i dont do the new boob now i never will!

the whole not being able to drive for 6 weeks along with the trauma of the first post op poo is only slightly gazumped by the thought of a new boob!

Thank you :-)

Thanks Baubles. Sorry to hear about your kidney problems. I hope it is now resolved. I am also pleased that you smiled through your mastectomy - this makes it a tempting option!
The plan for me is a DIEP I fear it may be weeks before my first post op poo. It took me 6 days after my WLE - codine is at fault.
What sort of reconstruction are you planning to have?

@user1471134011 @Blossom4538 sorry to see you hear hopefully it won't be long.
I am still waiting for CT scan and colonoscopy appointments the wait drives you crazy.

Although I have been sent a form for a blood test to check my renal function before CT .

Hi all
Could someone talk gently to me about PICC lines please? The trouble with weekly chemo is that my poor old veins - 'fantastic' though they are (I quote) - are not cooperating.

It's the though of it that makes me squirm. I have never been able to have pierced ears because I couldn't cope with putting the earrings in my ear. Just the thought of it makes me go weak and wobbly and I'm worried I'm going to faint at them putting it in and having to live with it.

My ex had a line for about 18 months during his treatment and I just couldn't deal with it or look at it....

A part of me wants it because the whole cannula thing is horrible, but I think the PICC could be worse.. help!

'faint at them putting it in'... this morning's chemo kicking in...

Afternoon everyone.

I have to confess I have not been on the thread for a while as everything just overwhelmed me in the last few months (as you will see below in the update) but I saw this thread on Active and noticed that Leslie had done a roll call and my user name was mentioned.

I'll try and keep it brief so in summary, I had a mammogram Feb 16 which was clear but in Oct 16 I found a large lump in left breast during self examination. Immediately referred and diagnosed with HER2+. One lump was approx. 5cm and another was found which was about 1cm with some other "dodgy material" picked up during the MRI scan, also lymph node involvement.

I have had 3 cycles of FEC and 3 cycles of T. Unfortunately the first cycle of T knocked me for six so they reduced the dosage and then said they would give me an additional T cycle if appropriate.

Initially chemo was given through veins but for cycle 5 they couldn't find any veins so decided to fit a port. Managed to get 2 cycles and a blood transfusion through the port but then it became badly infected - admitted to hospital for 2 weeks on IV antibiotics which had to be given every 6 bloody hours (hence the hospital stay). I have to say the hospital stay nearly pushed me over the edge mainly because the IV had to be done through cannulas in veins that were non-existent and the cannulas were getting blocked every couple of days so I was getting more and more distressed every time they had to try and put another one in. But finally it ended!

Oncologist decided that I'd gone through enough and so didn't bother with an additional T cycle.

In the middle of all this my Mum passed away at the end of Feb (she had been diagnosed with bowel cancer in Aug 16 with secondary liver and couldn't take the chemo as it made her feel so unwell so decided not to continue).

So it has been a terrible time and I have struggled.

I had a mastectomy and full axillary clearance two weeks ago with no reconstruction; as others have said it is considered most unusual. My reasoning was that I have spent so much time going backwards and forwards to the hospital that I wanted the most low risk, fast recovery option available and any reconstruction involving tissue from my back or stomach was not going to fit the criteria. In addition I don't have a huge amount of flesh to take and didn't really want additional scars. I could have had an immediate implant but with rads to follow I was worried that the implant would get damaged and have to be done again. So I have the option of an implant reconstruction further down the line if I wish.

I had the results of my biopsy yesterday and am still a bit stunned to be honest - I have been told that I have had a Complete Pathological Response which is really good.

I have generally been working through all the treatment - luckily I have a job where I can work from home so I was able to do that when I was most at risk of infection from the chemo but go in for the week before my next cycle.

Following the mastectomy I was back at work a week later (albeit from home) but returned physically on Monday of this week. Mastectomy is healing fine although I have developed a seroma which has been drained twice.

I have to say that work kept me sane!

I will stop here as this will be an enormously long post.

I have quickly skimmed through the posts and recognise a few familiar names which are good to see. I'll try and be a much better poster and check in more regularly.

TwitterQueen - if there is one bit of advice I would give you is DEFINITELY have a PICC line or a port put in prior to starting any chemo. They thought my veins were juicy enough to cope but I had a terrible time. I had two chemo leaks (one in each arm) and am now starting physio as I have terrible cording in the one arm which means it hurts to straighten it out. I have no veins available in that arm now for blood tests which is a problem as they are not supposed to take blood from my other arm as I've had surgery on that side.

Although I had problems with the port (eg infection) this was due to them not using an appropriately sized port for my body frame. During the times I had chemo through the port it was much less hassle and I imagine a PICC line would be similar.

Hope that helps.

Thanks Cookie. It does help. I think I'm looking for a mix of positive stories (though yours sounds horrendous) with a bit of of a kick up the arse and reassurance that I will learn to live with it..

does 'Complete Pathological Response' mean no sign of cancer? if so, FAB!

I'm on weekly chemo and have had 6 sessions to date (2 complete cycles). 1 more cycle (3 sessions) then hopefully a hysterectomy (ovarian cancer), then 3 more cycles (9 sessions), then Avastin weekly for up to 18 weeks. So even I can see that a PICC line makes sense.

Twitter, I would get the picc fitted. I wish I'd just done mine straight away as each week became more and more traumatic as they struggled to find a vein.

Having it fitted is fine - they numb it; but mine was quite sore afterwards for a few weeks but I don't think this is usual. It's worth it though to avoid the stress of the cannula, in my opinion.

Have they offered you a picc or a port?

Hi
I haven't posted in a while, just been a bit down and also busy. My potted history, I was diagnosed with Triple negative breast cancer at the end of Nov 16. 30mm and grade 3. I've had 6 rounds of chemo Docetaxol and Carboplatin. I'm having a WLE in 2 weeks and then radiotherapy. Family history of breast and ovarian but tested negative for BRAC gene.

Currently I'm trying to get my strength back after chemo and deal with the side effects. I have peripheral neuropathy in my toes which I'm finding really uncomfortable and my hand and feet randomly swell up. Most difficult is the fatigue I have, which is slowing me down. I'm trying to do a bit of exam marking at the moment, as I need the money, but find my concentration is gone by about 2pm and then I can't focus for the rest of the day. However things could be much worse and in lots of ways I'm appreciating life more.
Twitter I have a PICC and it's been great, get it done I don't even feel
Mine and you can have a tubigrip to keep it covered up. It made chemo so much easier, plus all the times I've had to give blood etc.
Short term pain for long term gain!!

Waves to everyone- far too much to name check individually. X

Afternoon all, cookie that sounds like such a tough time for you, I'm not surprised you have struggled. Have you had counselling at all - it really helped me during the worst patch of my treatment.
Blossom and snowy, welcome.
Twitter - I had a PICC, I didn't enjoy it but it was mandatory (or so they said!) at my hospital for chemo. It doesn't hurt, you can watch them fit it or keep your eyes shut and once in it is covered by dressings and a tubigrip so you don't catch it on anything. My friend had a port and that looked better as she could shower without the faff of covering it up and keeping it dry. It does make chemo much easier. Mine got infected and was taken out and reinserted once but that's unusual, and I only have a tiny scar now (like that matters!)
I have my next (3rd) zoledronic acid next month which is an unwelcome reminder of cancer. I have definitely made a mental shift just these last few weeks back to the me I was before if that makes sense.
Potted history - diagnosed Feb 16, lobular breast cancer stage 2, ER+ PR+ Her-, 40mm plus LCIS, WLE, SNB showed lymph node involvement. Chemotherapy and radiotherapy, now on letroxole after a 6 month tamoxifen trial. Also take venlafaxine for the hot flushes but they just help me cope I think. and zoledronic acid every 6 months for 3 years.
chewing - I can't believe you have had to fight so hard for the right treatment and still they mess you around
leslie I hope you are ok.
I have missed loads of people but my best wishes to all of you
bTW - my eldest turns 13 today! A whole teenager All 3 seem to have been remarkably resilient and I am so so grateful for all the treatment I have had that means I'm here with them. I've been quite tearful today .

Ah pepperrabbit my youngest turned 21 today! Can't believe how quickly that's gone. Have you had any noticeable effects from the zoledronic acid? Is it possible to pick them out if you only have it every 6 months?

Hi everyone waves

Thank you so much for asking after me Leslie I'm doing really well!

Brief(ish) history:
Found a lump in May 2016 when I was 39, GP said it was nothing to worry about, but because of family history (my mum died of BC in 1999 and my 28 year old cousin had it in 2015) she would refer me.

Was sent for an ultrasound (had only just had clear mammogram 6 months before) and sonographer said he was 99.9% certain it was nothing, but would biopsy just to be on the safe side! Biopsy came back as inconclusive, but suspicious. Lump was removed to biopsy and came back as a 10mm grade 3 ER/PR+ cancer with DCIS around it.

Decided I wanted to get rid of boobies as soon as possible (I had spent the best part of my life worrying about getting BC, how ironic!) so found a wonderful surgeon who carried out a double mastectomy and immediate reconstruction at the end of August last year. Although no further invasive cancer was found, it was recommended I had 4 cycles of chemo because of my age and the grade of cancer. Ended up in hospital with pneumonia & sepsis on 3rd cycle and so 4th was abandoned!

Since Xmas I've just been getting my life back on track. I've had some counselling, which I found really, really helpful, celebrated my 40th birthday, changed my full-time office based job to a part-time freelance/home based position, discovered yoga, and most excitingly have been selected from hundreds of applicants to trek across Oman in November to raise funds for Breast Cancer charity CoppaFeel!

I'm trying really hard to turn one of the most awful experiences into something positive. I still have panicky/down days (mostly when I have to go back into hospital for check-ups/bisphosphonate infusions, etc) but all in all have a new-found appreciation for all the good things in life.

Namaste :)

Sorry, I've been AWOL for a few days :) how is everyone?

I had a great time at Shine Connect at the weekend and even got to meet the lovely rocket

pepper happy birthday to your teen! ( and for you) I know what you mean about feeling more how you were before, tbh I sometimes feel like that even though I still have the cancer do you have the zoledronic acid at the chemo unit? Is it quick or do you have to go all day? There was a lady who used to nip in for her herceptin when I was in for chemo but that seemed to be quite quick (in chemo unit terms anyway!) so she went to work afterwards

Halfbaked the fatigue is tough. I hope it starts to improve soon. The peripheral neuropathy should wear off soon too. Some people recommend B vitamins to help, but I don't know if they do. Are you all set for your surgery?

Cookie I am so sorry for your loss, and that you've had such a grim time of it recently. Though that is excellent news about the biopsy results. Hopefully that makes the chemo sort of feel worth it? How are you finding work? I hope the seroma clears up soon

Twitter definitely go for the PICC line. It will make everything so much easier. I had very small veins to start with but the previous chemo I had really messed them up. It was such a pain getting a cannula in each time, and has been problematic since, though they did improve a bit with time. I have a portacath as I'm on chemo indefinitely. The only drawback is that only the chemo nurses and district nurses can use them, so I have to have a cannula for everything else. That won't be a problem with a PICC line as they're always ready to go. It'll probably be useful for your surgery too.

VLCos I hope you get your appointments soon

Welcome user but sorry you're here too. Do you have an appointment yet?

Blossom welcome too. I'm glad you found us :) do you have a date for the clinic yet?

Sandy it sounds like a big decision. I hope all the experiences here will help :)

Argy happy birthday to your youngest

Jo it's great to read so much positivity in your update. Though hopefully you know we are around if you need any help on the down days. Well done on being picked for the Oman trek. That sounds fascinating. How far will you be walking? Will you need to do lots of training?

lookingforbaubles I hope you get your appointment soon. What a drag. Phew to cholesterol results not being cake-related

fluffy good luck with all the finance stuff. I think Macmillan have benefits advisers available if you need them. I think it is wise to hold off on stoma reversal for now. My situation was a bit different as I had an ileoanal pouch rather than having my rectum reconnected, but I had no end of issues and I really wish I had at least waited until after chemo to have it done. Now that I'm on chemo again I'm finding life so much easier with a stoma. I will stop wittering about it but I am happy to share more f my experience at some point if you're considering it and might find it helpful

helly yippee for being nearly finished at your horrid job! And I'm so glad your pain is easing up and that the antidepressants are helping. It sounds like it was definitely the right move to change jobs

royal I have my fingers firmly crossed for your follow up being completely boring and uneventful this time

chewing FFS! Are you being treated at Fawlty Towers?! I hope they have got their act together and sorted all the appointment screw ups. You really do not need the additional stress

I hope everyone has had some sunshine today. It has been glorious here.

I'm waving to everyone I've missed. Sleep well lacies!

TwitterQueen - yes the Complete Pathological Response means no cancer which is the bestest of the best results. Unfortunately I did have to have a mastectomy due to the two lumps and the "dodgy tissue" (there is a medical term but I can't remember it) - I only have small boobs (or should I say boob now) so if I'd had a WLE, by the time sufficient margins had been taken there would not have been much left anyway.

I saw my oncologist yesterday and he was so chuffed that he gave me a big hug (which nearly made me cry). I did ask if they were absolutely sure and he said that one of the top pathologists in the UK had done my biopsies and she was so impressed with the results that they had a long conversation about me and my treatment and I think they are using me as a case study.

I've still got to have RT (15 doses) and I have 13 more Herceptin injections to go. I did query the RT treatment given the CPR but he said it was a belt and braces approach and they recommend it regardless but I am having the minimum dose. Any advice re RT would be most appreciated.

Pepperrabbit - I've not really considered counselling as I just feel I don't want to re-live it all. I have had tremendous support from family and close friends so am not sure counselling would be of benefit but open to recommendations.

Leslie - I've not managed too badly at work. I would say through all of the treatment, including chemo, I have been about 85% attendance. I was doing really well until I was admitted to hospital with the port infection for two weeks and actually would have worked from the hospital had they had a decent WiFi/Phone signal.

It helps that my work are very accommodating and I have a job where I can work from home and, as I have said, it helped keep my sanity as I think I would have struggled even more without a distraction.

I was back at work the week after the mastectomy (albeit from home) and have now returned full time although I will play it by ear once the RT starts as I am not sure how much that will affect me - mainly fatigue by the sound of it.

The seroma is "manageable" - my DH and I have a bet on how much will be drained and loser buys dinner. The second time it filled up, it was bigger than my remaining boob and I had to use the comfi/softi filling thing on that side to even it all out.

I have to say the numbness in the armpit and along my arm is very weird feeling. I am never sure if I am actually applying deodorant or not. I'm probably just waggling it around in the general area.

Well it's a lovely day here - I drove into work with the roof down on my car although my wig looked like Donald Trump on a bad hair day (not sure he ever has a good one ) by the time I arrived so had to do a bit of recovery work.

Hi everyone hope you are all doing ok?
VLCos have you heard back re your CT?

I am feeling a little worried,my mum is needing a hip replacement and yesterday at her consultation she mentioned that she had been having a change in bowel habits for some time-but thought it could be related to her hip? Consultant said no and re checked her Pelvis Xrays-said there was a slight shadow on the Bowels-so sent her to get blood tests done(she's not had any taken since 2013)Also told her to make GP appt to go over everything!
I am having my appt soon to discuss my own colonoscopy.
I am worried for my mum(she is not in the slightest!) and now of course thinking of the family connection!
I am sorry if my worries seem small compared to everyone elses and especially as I/we do not even know if it is anything we/I need to actually worry about!

Hope everyone is OK !
@charliebear78 hello! I have had a blood test done to check my kidney function they do this before the CT scan as the dye they give you can effect the kidneys .
I can ring up Monday and make an appointment. So hope it's next week or week after.
Still waiting for letter RE colonoscopy . Being paranoid and wondering why he's ordered both . As online people seem to be diagnosed and then have a CT to see of its spread :-/ he did mention it was because crohns can be seen more on a CT . Who knows I just want to get it over with now as my mind is going crazy. Feeling nauseous with anxiety at times.
How are your symptoms ?
Your poor mum does she have to go through the GP now ? I have quite a bit of pain around the hip .
I hope it's nothing and she gets a clean bill.
How awful you both are having the same situation.
When's your consultation ?