Hi @Seagulls, I got my body pillow off of Amazon - just search for full body maternity pillow, there are lots of choices on there.
I’ve never heard of fibrogel, where do you get that from, is it prescribed by GP?
Might look into that, as I’m sure I’ll need more constipation remedies for going through Chemo soon.
Hi @KChest, we seem to be at a similar post-DIEP flap surgery recovery stage - my surgery was on 2nd August 2022.
This was my 4th surgery, as I initially had a Lumpectomy back in May, followed by 2 cavity shaves in June but didn’t get clear margins, hence the Mastectomy with immediate Reconstruction in early August.
Before my first surgery I was really anxious about the anaesthetic but it has gotten easier the more surgeries I was having, although I did get nervous again before this latest surgery because of how much longer it was going to be.
I don’t know what I was like coming round from the anaesthetic, it’s one of the questions I have for when I have my follow-up with my Plastic Surgeon.
My catheter was kept in overnight and removed at the same time as my drains, so thankfully I didn’t need to worry about going to the toilet straight after surgery.
I was wide awake the first night in hospital because I’d been sleeping under anaesthetic for so long, I wasn’t tired - but the nurses are in meticulously checking the flap every 30mins to 1hr throughout the night, so wouldn’t have got much sleep anyway.
It was always reassuring when they used the Doppler and you could hear the blood flow sound to the flap.
Morphine makes me extremely nauseous for hours and then I’m sick, so I definitely wanted to avoid that, with having such a large abdominal wound.
I don’t like taking lots of medications either so was relieved that my pain was manageable when I stopped taking the Nefopam.
I also downloaded a free pills reminder app - when it reminds you to take your pills, it sounds like a tub of pills being shaken - pretty cool and very useful app.
The constipation was the worst - I was taking Laxido sachets and eating home-make veg soup, lots of veggies (brussels sprouts with Sunday dinner in summer 😂), liquorice and drank prune juice. Eventually 5 days after surgery things started to move 😅
My son is a teenager, so I didn’t have to worry about him running up for bear hugs.
It’s my cat I need to be careful with, as he likes to walk on top of me and sit on my chest when I’m lying down and he’s a big cat 🐱 so at the moment I’m having to sit up if I feel him starting to walk onto me.
I can imagine recovery from this surgery would be much more difficult with young kids around and they might not fully understand why mummy can’t hug them or pick them up when you initially get home. Hope you are finding ways to work around this like having your child sit next to you and having gentle hugs 🤗 and sitting shoulder to shoulder reading a book 📚
I’ve got that brown tape too which I’ve to keep putting on my surgical wounds for at least 4 weeks post-op - that, along with some extra dressings with inodine for a few areas that aren’t healing as fast as the rest, it takes me ages to get ready after my shower.
I was given 2 blood thinner injections into my thigh in hospital but wasn’t given any to take at home - I have to wear the compression surgical stockings for 6 weeks post-surgery (it’s interesting how we all have similarities and differences with the same operation.
I hope your appointment with your surgeon goes well and that they are able to easily resolve the issue above your belly button.
(That was another pleasant surprise with this surgery, getting a new belly button 😉)
I love the fishy pictures you have created of the octopus clamped on your chest morphing into a limpet . We lived in Jersey when my brother and I were children and we loved going to the beach and playing among rock pools looking at sea weed and cockles. There were some terrible spider crabs that hurt a lot if you stepped on them, and stinging jelly fish.
If I could survive that I am sure I will be ok with a bit of my tum moved up to my chest area.
What a weird world this is.
Seagulls of Trinity Jersey now in the Sussex Weald
I can already sleep on my back after previous breast surgery in 2003 but what is a full body pillow and where may I track down this exotic species in the jungle that is the Sussex Weald?
so useful to consult people who know what they’re talking about. The joys and lows of constipation something that we should all talk about more. I used to like fibrogel as it tastes lovely
I’m not much of a sneezer but I will have a box of tissues nearby and take some anti-histamine tabs to avoid this as much as possible. I don’t want to see my tum coming open if I can avoid it…
What a brilliant and detailed reply, I couldn’t have hoped for something so comprehensive and dare I say it pain relieving.
I do believe knowledge is power and I will probably print off a copy for the surgery I go to as it’s only in the village next door and I think they could do the wound after care. I am glad you told me about the bedpan and other issue. I haven’t had children or catheters so I have no idea what this is like although I did wear one of my mum’s pairs of incontinence pants when we had to drive into London at 5.45 am to go to a 10 o’clock appointment in Guy’s during the rail strike. That was made more nail biting by the electric car threatening to run out of juice as we were trying to find the carpark I had pre-booked.
We had to walk to it in the end then go back and drive there. It was only £20 for 5 hours and 11 mins walk away from Guy’s but my nerves were in tatters. That and finding a fast charging station for the trip back reduced my fear of breast ops immeasurably whilst they went sky high on being stranded on the M25 where there are areas with no hard shoulders.
That’s another kind of shoulder problem that I will try and avoid in future by exercising my brain to find a relaxing way to get from my home to Guy’s which hospitals approve of.
Once again, thanks for the practical advice from someone who has been there and come out the other side not exactly in one piece but in some new improved pieces. There will be some blips along the way but I will deal with them.
@Seagulls Thought I'd chip in on this thread as I'm in recovery from left sided mastectomy with immediate DIEP flap recon too
I had my surgery on 6th August and I've been pleasantly surprised with how rapidly I have felt more physically able. Prior to the surgery I had a real struggle mentally with fear and anxiety about such a large surgery but on the actual day of surgery everything went by so fast as to not give me chance to fret on the day.
One of my concerns had been that I was told the surgery would take around 8hrs initially (I was told this by the oncologist who gave me my diagnosis not my surgeon). However when I'd met the surgeon I was told it would likely be 4-5 hours and when I came around I heard her telling my husband that it had taken exactly around that amount of time (she also informed him of my first words as I came to from the anaesthesia to let him know I felt like I was very drunk 🤣). I have to give credit to the anaesthetist because he kept me chatting away to the point I didn't even know they were giving me the stuff to knock me out! One minute he was saying he'd just given me the drug that would make me feel like I've had half a bottle of wine and the next I was waking up saying I was feeling drunk haha.
I won't sugar coat that the first time I tried to move when I was a little more with it was painful. I knew I'd feel tightness but it was more tight than I'd imagined. I only had 1 drain though which was a relief to me but they had taken my catheter out straight away after surgery so when I needed to pee that was a bit of a rigmarole. They wouldn't let me out of the bed for the first 12ish hours so it was pelvic bridge and bedpan time and I think because of all the pain relief I couldn't really tell when I'd finished going 😳. So when I was allowed to get out of bed to pee, although it was painful it was so much better.
Something else I hadn't expected was quite a lot of back pain but that seemed to be positional because I couldn't stand upright. As the days have progressed the back pain has resolved.
I think you had mentioned not being able to take opioids and if you can avoid them, but keep the pain controlled via other drugs, then go for it because my main battle really so far has been the constipation. I suffer from IBS which tends to fluctuate between one extreme to the other so thought I'd be a bit of a pro but NOPE this constipation was another level. Definitely needed the laxative support! Actually was struggling to eat much initially because I just felt hideously full. As soon as I felt able to reduce the pain meds down I did and coming up to three weeks later I'm not actually taking any pain meds (and no I'm not trying to be a hero or anything, just don't feel I need them).
I was admitted for surgery on 6th August and discharged on 10th August which felt like just about the right amount of time for me especially as I have a rather over-excitable 5yr old son who would likely forget that he couldn't rush me to give me one of his big bear hugs. I didn't have anyone come out to check dressings or anything and instead popped back into the hospital after a week for my dressings to be changed and wounds checked. Actually they removed all of the dressings on my belly boob and didn't add any more and I have a thin brown paper like tape now as the only thing on my hip-to-hip wound. I was also sent home with the meds I needed including some lovely blood thinning injections. I have to self-administer these injections nightly into my thigh for around a month. I'm not ordinarily bothered by needles but I've got to say I do find myself having a moment to psyche myself up every time I have to do these.
Oh because of the amount of meds I was given to take home too I also downloaded a free app to set the appropriate reminders to actually take them. Thought I'd mention that in case you might find it useful.
Agree on the sneezing front. Keep a pillow nearby if you can and use that to hold the tummy down if you get enough warning of the incoming sneeze. I hadn't been taking my hayfever tablets because I'm silly and don't really like taking pills if I can avoid it. Decided that this is not big or clever now so back to taking them as I need them to limit my little sneezy outbursts.
I am actually going back to see the surgeon this week because I may have a haematoma or seroma (not sure if that's how it's spelled) just above my belly button wound. Either that or I've a recurrence of a hernia that I didn't actually know I had until I had a pre-op CT scan. It was hidden under my excess tummy fat but now I've a flat tummy it is a bit noticeable. Hopefully it is one of the former things mentioned because I believe that would just be a quick drain/aspirate job rather than more surgery but we'll see.
Sorry this turned into another one of my essays! But to summarize my experience has been a lot better than I'd imagined it would be and it's totally doable! Oh and my reconstructed breast looks amazing!
Good idea to try and avoid things that make you sneeze @Seagulls
I was washing my face before bedtime when the sneeze came on quickly, so didn’t have time to react and hold my tummy to brace for the sneeze and unfortunately a section of my abdominal wound popped open (unfortunately I don’t have dainty sneezes 🤧) it was quite painful too - this was 10 days after surgery.
It still hasn’t fully closed over yet, so being monitored to ensure it heals enough before chemo can start.
Hi @Seagulls, I’ve recovered quite quickly when I look back to where I was 3 weeks ago.
My surgery was on the Tuesday 2nd August 2022, my drains were all removed the next day on the Wednesday morning due to very little fluid collecting in the drain bags. I was then up and sitting in a chair 10mins after drains were removed on the Wednesday (which was quite painful in a section of my abdominal wound at first but I was glad to be out of bed to relieve the pressure points on my shoulder blades and bottom), I was walking around Wednesday & Thursday and I was discharged on the Thursday late afternoon, so 2 nights in hospital.
I must admit, on the Thursday morning I didn’t believe I was ready to be discharged that day and I felt a bit ropey just before lunch but after I had a wee sleep, something to eat and continuing to walk around to get some exercise, I felt better as the hours went by.
On discharge I was given telephone numbers for the hospital ward and they said they are open 24hrs a day and I could call at any time if I was worried about anything and they would see me if needed.
I didn’t have any home visits from District Nurses and didn’t need any GP help.
I had my first wound check-up back at the hospital on the Monday (4 days after being discharged) and every week have been getting my wounds checked, as there are a couple of areas that are taking longer to close/heal than the rest and they want to keep an eye on them because I’m due to start Chemo soon.
My pain has been manageable but for me one of the worst parts was the constipation and severe bloating of my tummy after surgery (not what you want when you have a large abdominal wound). Even though I had mentioned this to my medical team beforehand and they were proactive in trying to prevent this and I was taking a laxative, I must just be prone to constipation and bloating, as the same thing happened after a previous surgery I had many years ago.
I can’t take opioids because morphine makes me really sick, so they used a non-morphine alternative for during surgery and I was given a non-opioid painkiller (Nefopam) as well as anti-nausea medicine (as the Nefopam, I discovered, was what was what was making me feel really ropey) and paracetamol and ibuprofen.
I stopped the non-opioid painkiller (Nefopam) and the anti-nausea pill 8 days after surgery, as it was making me feel really exhausted (just taking a shower wiped me out for the rest of the day) and I felt the toxins were building up in my body.
The day after stopping this painkiller I felt much better, had more energy and my pain was manageable with just the paracetamol and ibuprofen.
I was also standing up straight again by 8 days post-op.
All-in-all I found recovery from DIEP flap surgery very doable.
I’m due to start Chemo in early September, as long as my wounds are sufficiently healed enough.
Wishing you all the luck in the world for your surgery on 8th September - I’ll be thinking of you.
One purchase I have found really helpful back home has been a full-body pillow, which helps keep me sleeping on my back and prevents me rolling onto my side.
Take it easy, listen to your body and you can post an update on your recovery once you are well enough afterwards.
If there is anything else you want to know, just ask 💗xx
Sorry to hear you are having a painful time. Cocodamol makes me sleepy and also very bunged up so I need to use laxatives with it if I take a whole tablet. I like the kind you can dissolve/disperse in water. Chemists call them dispersible cocodamol.
You aren’t meant to take it long term, but I break up the tablets which are huge into quarters and take a quarter in water with some paracetamol the cheapest the supermarket sells.
This way you can avoid getting too much but you can always top up as long as you keep under the danger level for paracetamol. they are more dangerous than people think. Never take more than four tablets four times a day as overdosing can kill. They are so common people can imagine they are safe. Cocodamol has paracetamol in it so also needs to be used with caution.
When i was having pain in 2003 I had tramadol which killed pain but was pretty unpleasant, I don’t know whether it’s fallen out of use now… Seagulls
I had a mastectomy and planned reconstruction at the end of June 22. However there wasn’t enough skin/flex in my chest to accommodate the implant in one hit, so I ended up with a ‘partial’. This is a sort of silicone doughnut with a port attached, through which they bung in a bit of saline every so often until the desired size/shape. That’s the plan anyway. So far I haven’t had any because I had so much accumulated (pretty sore!) fluid I was sent off for aspirations instead. Beforehand I hadn’t realised any of this so heads up just in case! I was in two long days/one night (7am- 9pm the next day). Had a drain in to manage (ie empty and measure) at home for about 8 days. So what with that and the port and the wound, yes it’ll be painful (they call it ‘sore’ which doesn’t quite catch it). They gave me co codamol and said not to be coy about taking it. A couple of weeks ago I was describing it as an octopus with claws, clamped on to my chest…but now it’s more of a limpet. Thank goodness as I’ve started chemo and herceptin so welcome a bit of respite!
Bad luck with sneezing. I shall try and stay away from the garden in case that starts off hay fever.
Having a diep reconstruction in Sept
I’m having a diep immediate reconstruction on 8 September and must admit to fear about the pain levels and fear about the healing process. How many days were you in hospital? Did you have any after care from your GP surgery e.g. district nurses calling at home? I would love to get on with things, only 16 days to go now.
flying off soon towards London
Hi Alloway1! sorry to hear you’re going through this cancer journey for a 2nd time - that must be very difficult.
Three weeks ago today I went ahead with the Mastectomy with Immediate DIEP Flap Reconstruction and I’m recovering quite well.
Most of my wounds have healed, with just a few areas that are slower than the rest.
My mobility is improving every day too.
I’m really happy with the results so far, albeit still some healing to do and then possibly some follow-up surgery like a nipple reconstruction/tattooing in the future.
Wishing you all the best and I hope all your treatments are going well. 💗xx
In 2006 I had a Mastectomy with Immediate LD recon. Currently, I am going through it again with my remaining breast and given the wait of years, I'd go for immediate recon now. 1 surgery, 1 recovery.
Hi MandyND, I’m prone to reading up on as much information as I can about my cancer type and about the procedures that they discuss with me.
It gets exhausting sometimes but then it allows me to advocate for myself and helps me to make more informed decisions on my procedures and treatments.
Wishing you all the best for the future.
Sorry for not responding sooner and so sorry to hear you’ve had such a difficult cancer journey.
I’m currently recovering from my mastectomy with immediate DIEP flap reconstruction surgery, which I had just under 3 weeks ago now.
I was discharged from hospital 2 days after my surgery - on the morning of my discharge I didn’t feel well enough to go home but I felt better with each hour that passed and got discharged late afternoon on the 2nd day after surgery.
Most of my wounds are healing well, there are just a few areas with slough showing through and a larger area in my abdominal surgical wound that popped open when I sneezed 10 days after surgery.
This still hasn’t closed over yet but got it checked last Monday and another wound check is coming up this Monday so will see what they say about it.
I met my Oncologist last week, as they are keen to move forward with my Chemotherapy and want to start it very early in September but I’m a bit hesitant until my wounds have properly healed, as I’m aware chemo can affect wound healing.
Wishing you all the best for your future surgery.
I think that's accurate. It is so different for everyone. I'm sorry to hear about all the delays everyone is going through. That must be awful. I too really struggled just saying yes to whatever I was told and at the same time I deeply wanted to trust that they knew better than me. I've read a million clinical studies in the weeeee hours and still, I dont feel like I have all the info. I dont know if that makes sense. I worry they missed something and my doc is like "thats why you'll be in endocrine treatment for at least the next ten years." Ewww.
Its all really hard. I hope everyone's surgeries go well and u all get the parts of your dreams!
I don’t think anyone can predict how you will feel after any of these options. Even if they appear to have gone through something similar no one is you. I found it extremely difficult to hand over my body to complete strangers who seemed to know so much more than me. That was 19 years ago at my first diagnosis. I now face my second phase of cancer treatment as the first didn’t work as I have a recurrence of the first cancer I had in 2003. At that time I had three surgeries - the benign lump removed which proved not to be benign, then a quadrantectomy to make sure all the cancer was gone, then another operation when that got infected and antibiotics didn’t work to clear that. This was under local anaesthetic and the only surgery I actually enjoyed as it was painless and I could see what they were doing outside the operating theatre. Shame despite radiotherapy afterwards there was something left behind so I now have two tumours.
That means this time mastectomy appears to be my only option and since it is now very difficult to get an appointment let alone surgery it seems there are delays everywhere. I have not made life easy for myself by asking to go to a breast cancer centre of excellence in London not my local general hospital. They do offer reconstruction there but not as many options.
I think I will be guided by my consultants but one advantage of delayed reconstruction is that they might have more staff available at some future time to do more operations. On the other hand, there might be an even bigger back log then. So much seems to depend on where you live, your age, your viability for surgery. So I don’t have answers. There is a website where you can view videos of people who have had different kinds of reconstructions. I forget the name of it but I did speak to someone involved in their website who was helpful a while back.
Hi there @MajesticTiger
I'm so pleased you had a good conversation and now the preferred treatment plan too, that is fantastic news. I'm delighted for you, truly.
Im doing really well 5 weeks post surgery and reconstruction and hopefully you will have a great recovery too.
I must look out for the book- I've mainly been keeping an eye on her insta page as it's so helpful. Thanks for the book tip!
Best of luck in the coming weeks with everything x
I managed to have a good chat with my Breast Care Nurse about wanting to change my mind re. treatment option 1.
Since then it has now transpired that they can now do the Mastectomy with Immediate Reconstruction next (before chemo), which I am delighted about.
I’ve met with the Plastic Surgeon last week (Friday) who is very nice and very knowledgeable and the DIEP flap is the preferred option for the reconstruction (this was my preferred option too).
So if all goes well, surgery should be at the beginning of August.
I also ordered the book co-authored by Prof. Trisha Greenhalgh and Dr Liz O’Riordan and it has lots of helpful information which I can refer back to as I journey through my different treatments.
Hope you are keeping well. 💗xx
Hi MandyND, sorry to hear you’re going through this cancer journey too.
Your cancer sounds exactly like mine (multi focal: invasive ductal and invasive lobular).
I had two tumours in my left breast and one was right behind my nipple, so they had to remove my nipple during the Lumpectomy.
Following two cavity shaves, they still didn’t get clear margins, so I now need to have a Mastectomy.
Since posting my question a couple of weeks ago, my treatment plan has changed and they are now able to do the Mastectomy with Immediate Reconstruction next.
I met with the Plastic Surgeon last week (Friday) who was very nice and very knowledgeable and the DIEP flap looks to be the preferred option (which is what I would prefer too).
The Plastic Surgeon had already spoken with the Oncologists before meeting me and they are fine with the Chemotherapy being after surgery.
Hi! I had a bilateral mastectomy in April. I decided I wanted reconstruction (although if you'd asked me right after the mastectomy I would've said no way lol). I only had cancer in my left breast but I don't want to go through this again. I'm 45 and if taking them both reduces any risk of recurrence, then I was all for it.
At the first hospital I went we started with a nurse telling me I could have a lumpectomy if I wanted it. A week later, the surgeon said the left had to go but he could cure me surgically. To me, that was a big sign to move on.
Luckily, I'm close to Seattle and there is phenomenal care here. I had two different tumors, with two different kinds of cancer, but both were invasive. At University of Washington they do the most complicated mastectomies and reconstructions all day every day (at least that's what the surgeons told me). I got to have nipple-sparing surgery and I'm so grateful for that. I was not given a choice on the order of events. During the mastectomy a plastic surgeon would place deflated tissue expanders in. Then, once I'm on the mend they would fill the expanders every week with saline until we are pleased with the size. If I needed chemo or radiation it would be at that time. Here's the reason, if radiation damages your skin that's all fixable during reconstruction. They don't want patients on chemo trying to heal from massive reconstruction surgery. It makes logical sense, but it meant that I felt like quasi modo right after surgery. I'll be honest, it sucked. I thought I would be flat but there's extra skin and ripples and weird extra armpit skin. Plus you have lovely drains hanging out of you Pinocchio style. But most of that disappears as they fill the expanders (I mean for weeks I described my parts as lumpy pancake batter with googly eyes...batter part is gone but the googly eyes are still here). That's done so your skin doesn't shrink up or create adhesions. Here, they choose not immediately fill the expanders because they want to give your body time and reduce infection risk.
I am aiming to have DIEP flap surgery in December if everything works out. They want to do my belly scan like right before. They told me it's rarely an issue to not have the right vascular situation for the surgery. I've had twins and a C-section, so it was a relief. Gosh I hope I don't jinx myself! LOL
Hope this helps!
In my left I had 2 tumors. Both are classified as invasive; one lobular BC and one ductal BC.
I hope you get a chance to talk over your options so that you can feel more confident with your decision.
I'm glad you found Liz O'Riordan useful, I saw her recommended on here and found her posts really useful, answered questions I didn't even know I had!!
All the best x
I think I definitely need to talk it over with my Breast Care Nurse, as I don’t feel comfortable with choosing option 1 and I just don’t feel informed enough to make such a life-changing choice at the moment.
I have just read through Liz O’Riordans’ blog and have found it very informative and eye-opening - thank you for recommending it to me GreenBird.
The outlook changing is very common. I'm expecting that myself or maybe it's better to say I'm trying to prepare myself for it. But it doesn't mean the outlook has changed for the long term. I remember my ex MIL stating ""That's very good isn't it"" when she had her tumor out and finding that it was in two nodes out of however many they took out and the doctors agreeing with her. And that was 25 years ago! And as far as I know she is still alive today. I know for a fact she was alive 5 years ago at any rate. So these kind of things may mean more treatment but if more treatment gets us where we want to be, then we'll do it 🙂 Glad that with breast cancer they have the treatment. You sound like you're doing great, have made positive changes, and will continue to make changes to accommodate anything this road brings you. And that's all any of us can do and I thank you for being a good example for the rest of us who may struggle with our mental outlook more (raising hand here). Continue healing wonderfully and keep us posted with how chemo goes. I'm hoping you sale through that, too, and can soon look back on this as a bump in the road of life. A life changing bump, sure, but a bump nonetheless.
Sorry to hear you are feeling unsure about your decision @MajesticTiger , have you had a chance to talk/message anyone who has had a delay between surgery and reconstruction?
It's such a shock to be told it's a mastectomy, I hope you are doing ok considering- be kind to yourself and try not to worry too much. When I think back to before my surgery, I was terrified really but trying to be strong. The thing that helped was when I read about a few people who had really good surgery experiences and outcomes - at first I had only read all of the side effect stories etc and I was overwhelmed. Once I knew it is possible to recover really well and quickly, I felt better and focused on that. I was absolutely delighted when I came out of surgery.
But going back to your dilemma, can you perhaps call the nurses on this website or your own nurse to talk through your doubts, I think if you are not happy you have made the right choice you should discuss it further to be sure.
I really hope you can get some peace of mind and feel confident with your choice. I think I mentioned Liz ORiordan's Instagram page before - if you haven't seen it I think she's worth looking at as her posts are very informative (breast cancer surgeon and has had it herself).
Take care of yourself and hopefully you can obtain more information to help you with your decision xxx
Sounds like you are very prepared @Kay0987 . Fitness seems to be crucial, I'm normally quite fit and healthy - the morning of the op the nurse preparing me said my blood pressure and resting heart rate were so perfect to keep doing what I do- mainly walking, so I'm slowly building up again but I'm also going to start on weights once arm is healed and ready. Diet wise the only thing I stopped was alcohol and it appears we should only drink very moderately from now on.
Like you said, this is life changing, there's no going back and that's one of the hardest things to accept. I'm finding it hard to get my head around how significant an impact this will have for the rest of my life. But thank goodness for all the treatment available.
I didn't have the radioactive dye- I was meant to have it the day before but the machine they were going to use on the day was broken so they went with injecting blue dye direct on the day- I'm still blue on one side of the breast and my face was a funny colour for a few hours after surgery!
I've heard of women having more nodes cleared at surgery but I think that's because they had already identified it had spread there already. And I am trying to focus on the positives of 2 out of 8 but at every turn the outcome has changed so I am a tad weary or cynical. But honestly most of the time I try to be positive and focused to help me cope.
Really nice talking to you, I'm in the UK and I agree the treatment regimes seem so varied- it's good to ask questions.
Take care x
Thanks for your response GreenBird and sorry to hear you’re currently going through this journey too.
As I only found out on Thursday that I now need to have a mastectomy, I haven’t had a chance to have an in-depth discussion with any medical professionals on what the recommended reconstruction options would be suitable for me.
As a result, it’s really difficult to know if I’m making the right choice on which surgery path is best, as I don’t feel well-informed at all.
I told my medical team on Friday that I’ll go with option 1 (mastectomy with delayed reconstruction) but doubt keeps creeping in and I’m wondering if I’ve made the right choice, as I’m really not happy with the thought that reconstruction could be 2-3yrs from now 😔.
I hope you continue to have a good recovery from your recent surgery and that everything goes smoothly with your other treatments. 💗 xx
I've actually been working on fitness quite a lot myself in my waiting period. It's the one thing that's been proven to make a huge difference. Yoga, walking, and some light weights. I've changed my diet, too, but that's less proven so I'll probably be less strict when treatment is over. How much I don't know yet but I'll figure it out. I think that's something that people who don't get breast cancer realize. Sure we have great treatments and the majority of people go on to live on the outside what appears to be normal lives. But it's never like before for us. We'll always have some anxiety around it. We'll learn to cope but once you get a diagnosis that could kill you, you're never be the same after that. There's no going back.
I wonder why they took so many of your lymph nodes? I'm scheduled for a sentinel node take out along with my double mastectomy. They'll remove one to three (whatever shows up with the dye) and biopsy those. I guess they could decide to remove more if those one to three look abnormal and maybe that's what happened with you. Did you ever get that radioactive dye put in before surgery? And I'm no expert but only two out of eight I think is pretty good. It still means chemo regardless but the less nodes with cancer the better. But yeah before I had surgery they wanted to do a sentinel biopsy. They did state that they usually don't but in my case they thought it a good idea since I originally wanted to do a double mastectomy and reconstruction at once. If my nodes were clear they knew they could proceed with no worries about how to manage radiation. But in saying that, I know my radiologist was very clear that radiation can be done regardless. Anyway you'll probably do chemo first and then follow with radiation. That'll give you more time to heal.
Just asking questions because I'm in the states and sometimes have noticed a slight difference in treatment. Not enough to think much about it but every once in a while I get curious as to what drives it. Anyway it's been a pleasure talking to you and exchanging info. Thank you for that. I know you get how isolating this is and as much as people with no experience try to help they can never be as understanding as those who have it. We just get it.
Thanks so much @Kay0987 !! Yes it was a bit of a disappointment as nothing had shown on mri' etc but I had mentally prepared so wasn't surprised. Thanks for the tip re implants and radio- I recalled reading something along those lines early on but in discussing options for mastectomy I was steered towards implant and forgot to ask about radio effects, they were definitely more concerned about the possibility of radio if I had body tissue reconstruction so I went with implant.
You know what, I only realised yesterday that I didn't have a sentinel node biopsy, I had an axillary lymph removal or whatever it's called!!! I knew that testing my nodes was going to happen whether it was lumpectomy or mastectomy and I just assumed it was an SNB ...I saw axillary mentioned on my letters and paid no attention, until yesterday reading about the difference between both and realised I never had an SNB!! There's so much information to take in and it's strange the things we latch onto. They removed 8 in surgery and 2 were positive- I have questions written down for my oncology appt next week.
I hope you are feeling ok, I recall you were anxious as having mastectomy soon. I'm still feeling good, stronger every day, walking further and able to do more housework, oh joy! But I'm focusing on trying to pick up fitness in preparation for the next stage.
Take care x
Hey Greenbird. We've talked before but I just wanted to say I'm sorry to hear you'll have to get more treatment. Hopefully it will go as smoothly as your surgery did though and you'll be done and on your way asap. My radiologist told me that implants and reconstruction do add an extra layer to radiation treatment but that it can be done. It's just harder. I hope that helps. Just curious but did they do a sentinal biopsy before your surgery or did you go straight in? They wanted to do that for me when I was going for reconstruction and mastectomy on the same day but eventually I just decided to get my mastectomy done first since I couldn't get into a plastic surgeon's office in the time frame I was comfortable with. So it wasn't needed anymore.
Hi there, sorry to hear that you have such complex options to consider, I too will let you know how my recent mastectomy and immediate reconstruction went and hopefully all the responses will help you choose the option that best suits you.
I had a mastectomy 3 weeks ago on my right side - the original plan was lumpectomy but MRI revealed more lumps and at that stage nodes appeared clear. However, given the overall size ,approx 4 cm, I was encouraged towards implant reconstruction as opposed to body tissue as apparently plastic surgeons would be cautious with me as possible would need radiotherapy afterwards. I took the advice, went with implant and, despite the rollercoaster of fear and worry and pain, it has been very successful for me. The first few days were the most painful but I adapted and slept a lot. Everything has settled really well and I feel stronger every day.
My pathology has revealed some positive nodes so I will have more treatment ahead, yet to be discussed, and I now understand that radiotherapy can possibly also have an impact on the implant - so I'd try and get advice from those who have had further treatment post surgery/ reconstruction. From what I have read on here, every woman's journey is unique and it can be overwhelming to make these decisions but getting feedback from anyone who has been through it I found really helpful.
Best of luck and take care x
Thanks DJD for sharing your experience - sorry you’ve had to go through this cancer journey too.
it’s so difficult having to make these choices but hearing about other peoples’ experiences does help see things from a different perspective, so thank you for taking the time to reply.
I hope you are still doing well and continue to live life to the full, enjoying all your activities 🙂
Hi Majestic Tiger - goodness, what a dilemma for you to get your head around.
Afraid I have no wise advice, just thought, as you'd asked for experiences, I'd let you know how mine panned out.
I had a right side mastectomy 5 years ago. I was advised not to have reconstruction at that time as there were concerns about the effect of radiation on the surgery site. However, I was assured that I'd be entitled to a reconstruction once other therapies were completed.
Following surgery I was given a prothesis to wear - it can be worn directly on the chest or tucked into a pocket in a bra. At every subsequent check up appointment I was asked whether or not I was considering reconstruction. At the first of these appointments I was sure I was not up for more surgery and declined the offer. At the next, I asked about reconstruction options as I was curious but, was still not convinced it was for me. By the next appointment I knew I was completely happy with my lot and opted to stay as I am.
I'm perfectly content, with my prothesis - when dressed, nobody would notice it. It doesn't impede my lifestyle at all - I go to yoga and pilates classes, play netball and swim (it tucks into my cossie) fairly regulary. I'm very lucky to have a partner who accepts me 'warts and all', so have had no pressure from other 'interested parties' to make any decision.
Obviously, the choice to reconstruct or not is so very personal, so I'm not advocating non-reconstruction, just that it's the option that suited me. Hope this has been helpful.
Good luck and very best wishes for whichever route you choose.