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

[Trumpton]

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

@Hippiechick162 I didn't have a mastectomy but researched thoroughly after op number three which I knew hadn't worked in clearing margins and I had just had enough! I spoke to a lady whi has had the tummy tuck. Her boob is like her. It puts on weight, loses it, is warm. However the recovery time was fairly massive and she couldn't lift a drink from her bedside. Loads of drains. Recovery after the tummy tuck was worse. But she is really happy with it. Another friend of mine had a double mx and inplants straight away as she was young. There have been some 'ridging' and she may, at some point, have to have new implants. She looks amazing but says she can't sleep on her front, they are cold and don't feel part of her. I read that the latimus dorsi op where they swing the muscle round from your shoulder can lead to complications with those muscles. Having suffered with a frozen shoulder for a year, and the pain, I would be wary of that. I'd rather have mobility than a boob.

I was lucky and didn't have to make a decision as opted for final margin op and it worked. Had I had to make the decision, I think I would have either gone for the tummy tuck or nothing. It's a ten hour op so I think you need to be in good health. I think if I had been much older I'd have gone flat. If I were much younger, then I would have deffo done the recon.

@Eve2020 waiting is horrid. I have a liver blob. I've had an ultrasound and CT scan. Onc wants to send me for an MRI but consultant radio says not worth it coz blob is same for two years. I may always have had the blob. Our skin gets all sorts of pimples and blood blisters and our organs do too. Keep busy. It is highly unlikely to be something nasty - they seem rather cautious these days because of litigation. Fyi, if you have a scan under contrast, when they put the contrast in you feel absolutely certain you are wetting yourself. The sensation is most odd. Yet you are not. Really odd.

Thank you all very much. Not sure if I’m replying in right place !!

Hi Hippiechick162, best of luck with the surgery!

I had a radical mastectomy with immediate DIEP reconstruction in 2016. Like you, I didn't want an implant and I'm very happy with my new "made of me" breast, especially as DS is quite boisterous and likes to smash in and give big hugs.

To be honest I went for the DIEP because of the attraction of having my tummy fat relocated and reused; to me it was an elegant solution. I didn’t consider the shoulder flap option much because of this, but here’s my experience with the DIEP. Apologies a lot of this will sound tummy-centric, but it’s the nature of the surgery.

• I spent 5 days in hospital and was able to go out and about (e.g. visit WB Harry Potter studios) a couple of weeks after the surgery; they took out my drains maybe a couple of days before hospital discharge
• I needed some recovery time. Had to walk around a lot and get used to the abdominal skin having been stretched; at first I could only manage short walks to the bathroom pretty much doubled over, because a large chunk of tummy tissue has essentially been cut out and the remaining tissue and skin stitched together
• Also did PT and gentle exercises to regain flexibility and strength in the arm and shoulder on the side of the mastectomy, and to get some (very minimal) abdominal muscle tone back
• I took 2 months leave from work and did a gradual return to work facilitated by health-type HR
• I had to wear a medical corset for months after the surgery, which was the most irritating thing. Was sweaty and itchy all the time, it drove me nuts but now I don’t really remember that bit
• There was not much pain in the reconstructed breast or abdominal incision post op. Until now I have no sensation of touch ~2cm above and below the abdominal incision (possibly the numb area has shrunk a bit over the past couple of years), and also in the circle of tummy flesh/skin in the centre of my reconstructed breast
• My fake belly button is surprisingly realistic; I don’t miss my original one
• My abdominal scar is very wide, bisecting my entire middle. It would be completely visible if I wore a bikini or midriff baring top. It looks a lot like the scar shown here: https://mysurvivalstoryweb.wordpress.com/2017/08/15/reconstruction-2/amp/

. For many patients my surgeon said they could position the scar a bit lower but they couldn’t do much with mine; it had to do with my belly fat ‘riding high’ on my middle. So maybe ask your surgeon for pictures on how your scars might look like with a shoulder vs DIEP flap. Fortunately I’ve never been a bikini wearer or sunbather so I’m not too bothered, just quite happy with a flat tum silhouette. But I guess with a DIEP scar you will see it every day in the mirror, whereas a shoulder flap scar will be less ‘in your face’ and intrusive

• My reconstructed breast has a circular scar on it (the circle in the middle is the tissue and skin from my tummy) and I haven’t gone for nipple reconstruction. I quite like it this way. If you draw a circle on the boob of a Barbie doll it looks like that.
• I used silicone scar sheets which I think helped keep the scars relatively flat and thin. You could consider tattoos for the scars as well (google ‘DIEP scar’), I've seen some that look really nice.

Anyway hope my rambling helps. Hugs to all the Lacies!

Hi everyone, I've decided I'm going to go for the DIEP. I know it'll take longer to recover but I'd rather take a while than risk possible movement issues. Totally exhausted today.
Kinda wondering what it means to not have receptors as the specialist said they can't find any receptors in any of the biopsies they took and what this means for my treatment.
Hope the weekend has treated you well

Hi all,

Hope you've had a good weekend? I haven't really done much. Stayed with bf who is driving me crazy at how chilled he's being with everything. @peaceanddove I can totally relate to how you're feeling there! I've actually started sniping at him!

Tomorrow is the day I'm back at hospital to find out what treatment I'll be getting and assigned a cancer nurse. Think the reality is going to hit tomorrow.

My family want me to get the gene test to see if I'm a carrier. Mainly for my child as my mum had cervical cancer and cancer runs in my family (all, but BC)

I remember they asked me if I wanted more children and if so, maybe freeze my eggs? Has anyone done this? Has anyone battled breast cancer and gone on to have children without any issues? They said to me I can't have any children and I mustn't get pregnant for 5 years. I didn't really think about having anymore kids I'm lucky enough to have one, but now they've told me this, I'm feeling like I wish I had another baby now. My minds playing tricks with me!

Anyways I'll update tomorrow when I'm back and have processed everything. Hope you're all ok xx

Best of luck tomorrow, Nonotmenori.

Hello, I hope it's ok if I post.

I'm 36, still breastfeeding a 15-month-old and went to GP on Friday about a discoloured area on my breast that's been there for ages: I initially thought it was a bruise from being grabbed at by a hungry toddler but it never went away. To be honest I've probably had a few odd breast symptoms- nipple sort of sinking down into breast is one- that I attributed to breastfeeding over the last six months plus. Anyway GP discovered two lumps, one in each breast, which I hadn't noticed and has done an urgent referral. The one in my left breast she said was mobile, which is a good sign, however that doesn't seem to be the case with the one in my right breast which is where I've had the discolouration and sinking nipple.

I'm not in the UK at the moment but approach, protocol, treatment etc seems similar. I'm waiting on a referral and I guess mammogram. I'm mostly calm but I am a bit worried. My mum was treated for breast cancer five years ago so I know some of the jargon and things that will happen. Unfortunately we lost a family member ten years ago when she was around my age who discovered her breast cancer while still feeding, and a close friends sister is currently finishing treatment for breast cancer also discovered while she was breastfeeding so while I know it's most likely nothing I also know it's possible it will be.

Did anyone have investigations while breastfeeding? I've read some specialists don't think mammograms are as effective. I'm trying to stay calm, I generally feel best when I have some sort of plan or understanding. Having worst case scenarios popping in my head, also worrying that if this is something, even if it's treatable, it would mean never having a second child which is something we'd already started planning- I'm an only and was always adamant I wanted two. So I understand your worries about that @Nonotmenori though obviously I have the luxury of it being a theoretical and not having to make immediate decisions.

Anyway it is really encouraging and helpful reading from people going through this, I'm hoping for clarity soon one way or another.

@Nonotmenori good luck with appointment today. I’ve had a form to fill out from genetics people which I did and haven’t heard a peep really should follow up in that. They want to test me cause apparently quite rare to get bowel cancer young.

What are you leaning towards re eggs? We were hoping to (as was just about to start trying for second when we found out) but my surgeon said it could take a few months to get enough to properly harvest and I was too scared to wait that long so just went straight into treatment. So time will tell. No experience with breast cancer and babies sorry.

@worriedmama1980 so sorry you find yourself here. The waiting is absolutely the worst part as you think of all the possibilities (mainly the worst) hopefully your referrals will come through fast.

I’m feeling well. Week off . The weeks are going so fast, I assume cause I am wishing the end of the week and round three not to come.

Hope everyone had a good weekend

no good luck for today xxx
hippie hope you feel better now you have made a decision?
Dh away atm so am feeling a bit low. It'll pass.
Hope everyone is ok and not too cold! ❄❄❄❄

@Hippiechick162
Sorry for delay . I have had a rough couple of days but now tucked up in bed and able to reply .
I , too, came to the decision to have DIEP for a few reasons .
I am heavy busted and would have trouble with a prosthesis and did not want an implant .
According to my surgeon she can make the size of my new breast to a c/d cup rather than the ff it is at the moment and then lift and reduce healthy breast to match a couple of months after .
My initial thought was a straight mastectomy but talking it over and taking into account the fact that it could be a couple of years before I reached the top of the list for reconstruction decided to go for it all at once .
I was due to have the mastectomy in November but was found to be HER2+ so needed chemotherapy first and will continue with Herceptin every 3 weeks for a year .
It is a daunting operation but I was lucky enough to meet someone who had the same op with the same surgeon 6 weeks previously and we skipped off to the ladies and she happily showed me everything ( the clinic nurses were much amused ) .
Do feel free to dm if if you want .
I felt well enough tonight to have a weak G&T with my dinner . Progress indeed .

Thank you fir the good luck vibes. I'm bing referred to the gene clinic, but if they don't contact me by Thursday, I'll be booked in for surgery. I'm stage 1 grade 3 which is really worrying it's aggressive fast cancer cells. If I have the gene which both myself and the doctor think is highly likely I'll be having a double mastectomy. They're happy to wait the 5 weeks, but not if they don't contact me in the next few days. Work has been fantastic and said to take time off if I'm stressed etc.

I was let down by my partner who's apparently in bed sick with a cold so I went by myself. Never mind, find out who really gives a shit about you eh!

Sending you all love ❤️ thanks for asking about me I appreciate it xx

I'm sorry to hear about your partner.
Thinking of you x

@Imstinkyeddie Thanks I'm furious just because he didn't even bother to call me to say he wasn't coming and I had people who would have come with me. Dunno why I'm so surprised he's hardly the best, but that's another story height how! How are you feeling? Is your DH away for long?

@worriedmama1980 keeping everything crossed for you.

Height how? Seriously my spelling s getting worse! Meant heigh ho!

I'm ok thanks x
He's away for a week this time x
Can't believe he didnt let you know

Thanks @Trumpton probably will dm you at some point. Glad you're feeling better, weak gin better than none xx
@Nonotmenori that's rubbish! But I'm sure everyone knows just how bad "manflu" is *note the sarcasm. Hope you let him know how it made you feel. Xx
@Imstinkyeddie glad you're feeling ok at the moment. Hope the low mood passes, comes in waves doesn't it. Definitely feel better now I've come to a decision. Take care xx

Oh @Imstinkyeddie that must be hard. Hope the week hurries up for you and he's back.

@Hippiechick162 hope you're ok? I'm not speaking to him. He can go shit! Xx

I will catch up
Properly tomorrow but just wanted to say nonotmenori. That's just rubbish to leave you to go on your own with no notice. I feel very angry for you 😡

@Nonotmenori sorry to see you had to go on your own and your partner didn’t step up for you .

Got bloods and oncologist appointment today. The weeks seems to go so fast towards something I don’t want

@Trumpton sorry you've had a rough couple of days. I did feel the effects of the paclitaxel grew as the weeks went by.

@Squffy01 good luck with onc appt, I hope you get all questions answered.

@Nonotmenori at least things are moving faster for you now. When might the surgery be? Mine was stage 1 grade 3 but they initially thought grade2 until after the operation. It's sad that your partner has let you down, especially at this stage. Unfortunately it does seem common that people we thought were close are disappointingly unsupportive when cancer strikes.

@worriedmama1980 I'm sorry to hear you are in this position. I don't know anyone who is breastfeeding and having cancer tests. It must be very difficult because I recall my breasts were so lumpy and bumpy at that time. There is I think a FB group for younger women with BC, you might find someone on there in your position?

I have my first Herceptin without chemo today, also my PICC is finally coming out. I am feeling very low and unwell. My Rheumatoid arthritis has flare up badly and I am in a lot of pain, my hands, knees and feet hurt a lot and painkillers barely take the edge off it. I feel my family and friends have heard enough of me moaning and I just don't know what to do with myself. I have to get to radiotherapy for three weeks starting on Monday.

@CointreauVersial (and anyone else having or has had radiotherapy) - I wonder if I can ask you about how your skin is holding up? I start mine on Friday, I've got six weeks in 30 fractions and I've been told not to swim while I'm having treatment. I've only just starting swimming again in the last few weeks after my surgery and it makes me so happy to be in the water. I've googled a bit and as far as I can tell the ban on swimming is because of the risk of infection or further damage to the skin.

I'm desperate to carry on swimming as long as I can - I'm aware I might be knackered after a few weeks anyway - I don't want to ask the specialist nurse again as they were adamant I couldn't swim or do any exercise for a month after the surgery (which I complied with). I'm much better now though and not feeling very compliant.

Anyone with any experience of this? My area of treatment is my lower back/arse - I've got a significant chunk of muscle missing now and I want to make sure I don't lose any more. I hate not exercising

Hello all. Warm greetings to @DinosaurMayonnaise, @Eve2020, @worriedmama1980 and @peaceanddove who are all new arrivals at the Patience Inn since I was last here. Hope this thread can help you through.
@Nonotmenori I'm joining the chorus of indignant disapproval of your DP. TBH if he is really sick, it's better for him not to go into a hospital, but he absolutely should have let you know in advance. And I'm sorry your cancer is grade 3, same as mine and it's not nice to know. But early stage makes a huge difference as I'm sure they told you.
@Trumpton
@Squiffy01 thinking of you with the appointment today, and hope everyone is being v nice and helpful.
@Hippiechick162 good that you've made the decision about reconstruction.
@Trumpton glad you are feeling well enough for a drink!
Just wondered if anyone else saw the BBC2 documentary about CAR T cell therapy last night? I think it must have been made over two years ago, maybe more. I just stumbled across it and decided to watch, it was very moving, also fascinating. Apparently the treatment is now being prescribed for children. Only seems to be for leukaemia patients now, but the way they're talking about it, sounds as tho' it could be used to treat (?) all cancers?? I don't want to upset anyone - obviously it's still early stages and by no means a guaranteed miracle cure.

@Skap I have to call Thursday and they'll arrange it if the genetics clinic doesn't call. It's not looking likely to be honest, but I live in hope! I've spoken to him and he's in bed sick and vomiting. Poor little darling must have hurt his hands too seeing as he couldn't text me! Anyways it is what it is. I'm going to ensure my cousin is with me when it's surgery day. My mum wants to fly over, but I'd rather she didn't lol

Can I ask a stupid question? I seem to be constantly hungry. Like 10 mins after eating a horse. Could this be a side effect do you think? I promise you all I'm not dim

@Bloodybridget How are you getting on? After surgery how fast were you back at work?