Hi Tina. How are you doing? Hope you’re getting out and about, keeping a bit busy although I expect you’re getting prepared for next step in treatment. Have you seen onc again to get start date? I’m doing ok, deferred recon til I get results... did wonder if I’d done the right thing but just couldn’t do it til I have all results. Had couple more nodes sent off... results in 3 weeks. Feeling really cream crackered, up and down but physically ok. Hugs xx
Hi Appletree, it was a different BCN to the one I usually have. They've been completely under resourced this past week so I have somewhat forgiven them fir not getting back to me after leaving message, but can't forgive that particular response!.
My own BCN did ring me yesterday after I'd been for an emergency doctors appointment as I was worried about the seroma I've developed. My hospital don't do drains during ops and don't manually drain after unless there's infection. So I just have to be patient and let nature heal.
But she did give me a bit more advice on general stuff that hadn't been offered before.
I now have my oncologist appointment at Christies next Thursday, so going to gen up as much as I can before I go so I can make the best decision.
Thanks again for the advice xx
Savanna, I am absolutely horrified by. your BCN's approach, particularly in telling you 'you should be happy the cancer is gone'. She should be looking at your situation through your eyes and helping you to think through your options.
Is your GP approachable and can you get some support there? You could ask your GP to arrange for district nurses to visit you to help with the wound.
As for talking through the pros and cons of chemo, have you thought of phoning Macmillan? Their number is 0808 808 00 00, 9.00am - 8.00pm, Mon to Fri. We are all individuals, and no one person's experience is a guide as to another's.
Is there a friend or relative you can take with you when you have the oncologist's appointment? Be firm and ask the onc to talk you through all the post-op treatment procedures and the likely side effects, taking into account your own medical history. Be sure you are comfortable with the decision you make, that you know whom to go to for help should you need it at any time and that there is support available to you.
Very best of luck and please do keep us informed of how you are getting on.
Hello all, and thank you for all your good wishes! Had my surgery as planned (L side mastectomy and full lymph node clearance plus silicon reconstruction) on Monday.
Going in felt rather like being on a rollercoaster: that long slow climb to the top before hurtling down, just sit tight and hope for the best! But had excellent care both in the operating theatre and afterwards.
Feel pretty sore now but nothing that paracetamol can’t deal with, and was also lucky enough to share a ward at Guys with a lovely fellow traveller on the cancer journey - we laughed and joked about all the absurd indignities we’d had to agree to over recent months...
Hope you guys are also rallying well from your surgeries. Hugs to all, onwards and upwards!
Aww Appletree, thank you so much for such a comprehensive reply!
Unfortunately my breast care nurses have not been easy to get hold of during the whole process. I rang again this afternoon and got an answering machine message that due to unforeseen circumstances resources were low and it might be better to contact the GP for non-emergencies.
All they told me when I left hospital after surgery was if it got very hot I had to go to A&E and to do my exercises each day. When I went back for my results last Thursday my surgeon said there was fluid build up, itbwas normal but would disappear soon, but to me it's got worse.
So guess that's a call tomorrow morning to the surgery as it's got no better today, there's no leakage, but I didn't have a drain, the incisions have healed up and look clean. It's just the whole breast is sore and tight and bruised, it's warm but not hot.
The whole chemo thing sounds so complicated but I'll look into these booklets, thank you for pointing me in that direction. Sadly my bcn gave me nothing apart from informing me it's likely I'll be having chemo, it's an 18 week course, 6 treatments every 3 weeks, I may lose my hair and I may not make a tour with my favourite band in December as I may be too tired! Not want I wanted to hear and I burst into tears, to which I was told I should be happy the cancer is gone. Not been too impressed sadly!
As I'm ER+ 5/8 I guess I'm borderline and I still don't know about HER2. Guess I have to wait for the oncologist appointment, but the wait is agonising!
Thanks again for your comments and advice, most appreciated xx
Hello Savanna, I do understand your concerns about seroma and also chemo.
It sounds as though you need to get advice about what is possibly a seroma. Do you have access to a breast care nurse? Is there a wound clinic you can go to in your hospital? They should have given you instructions when you left hospital, as it is common to have problems with build up of fluid after breast surgery. If there is no-one obvious to go to in the hospital (and you should have been given a contact), you need to contact your GP a.s.a.p..
I had a WLE and axillary node clearance at the end of April. Mine was a 25mm invasive ductal carcinoma, grade 3. Margins were clear and only one node (a sentinel node) was cancerous. I was ER +ve, 8/8, and HER2 -ve.
Subsequently, I had problems with serum building up and, periodically, the swelling dying down and a clear straw-coloured fluid leaking from one end of the axillary wound. I was told this was quite normal, especially as all the lymph nodes had been removed from that side. This went on for about five weeks, with district nurses renewing the dressing over the wound which appeared to be healthy. After five weeks I was admitted again for surgery - simple revision of the axillary wound and re-stitching, and antibiotics. That sorted that.
As for adjuvant therapies, I was told radiography, hormone therapy and bisphosphonate therapy were all mandatory, but re chemo I was in that borderline goup of women who, at present, are being recommended for chemo but not all of whom need it. Some members of that group are being overtreated. I was informed that I would be an excellent candidate for the OPTIMA trial as the relative benefits of chemo were unceratin, given that I was strongly oestrogen +ve. The randomised trial is testing out the validity of a test which is being developed to identify which women, in the group referred to, will actually benefit from chemo and which won't and should therefore be spared it.
I discussed the side effects of chemo in some depth with the oncologist, relating the likely problems to my past medical history and my home life and how I would have to cope, living on my own. He acknowledged the possibility of serious long term effects and that quality of life is especially important. His view was that hormone therapy was especially important for me, and conceded that my decision not to have chemo was a sensible one given my medical history and circumstances. He was satisfied I had made an informed decision. Even so, he and his registrar had both been very ready to give it to me, the registrar especially; it had been down to me to ask questions and think round the issues.
As regards your own situation, as you have already had surgery which is the main curative therapy for primary breast cancer, the chemo would be an adjuvant therapy (i.e. post surgery) and designed to prevent further cancers. Breast Cancer Care have extremely helpful booklets explaining this. There are different combinations of chemo drugs used for different cases; the programme is tailored to the individual patient.
You might find it helpful to think out questions to ask you oncologist in advance of your next appointment with them, and find out from them just how important they feel it is for you to have chemo, and whether it is reasonable for you to do without it, if that is your wish. Ultimately, it has to be your decision which treatments you have. Don't let anyone else push you in either direction; be comfortable with what you decide.
Hi Tina .. Sorry you’re having to cancel your holiday. I was hoping to hear you might have avoided chemo from what you said before. Lots of threads on here are very informative, supportive and where you can ask questions of those who are going through chemo and those who’ve finished. I hear there is a list of se’s but that’s not to say you’ll have them all, everyone is different. They do give meds to counteract se’s. They all say it’s doable but to take things one step at a time. Sounds as though rads are not definite. It’s certainly a lot to take on board. Hope you’re still making a good recovery after your surgery. I remember someone saying there has to be a certain amount of time between op and chemo. I’ll be through op this week, what remains of dodgy boob has to go ... don’t think I’ll be getting a replacement.
It has been cooler... very welcome although warming up a bit again during the day. Might be out later tonight stretching the old legs.
Hi Jean ... Feenix... onc appointment was pretty much as expected (apart from the 2 hour wait) although at the same time disappointing. I had hoped to side step chemo - no such luck and if not then delay until after hols in Sept - again no such luck. I have a week to think about it but the figures are fairly convincing (although not the list of potential se's) so holiday is cancelled. Think I'm most upset about that rather than actually having chemo (although that doesn't particularly fill me with excitement). In addition they're talking about rads but not discussing it until mid cycle chemo. And there's hormone therapy on the horizon too so feeling pretty overwhelmed at the moment. The tunnel seems awfully long.
How are you doing? Are you still on schedule for surgery at the end of the week? Have you reached any conclusions about recon? Hope you're managing to get out walking now the weather has cooled a bit (or maybe it hasn't where you are?) Sending hugs T x
I’ve been thinking about you Tina. It’s bloody awful waiting to get results. I’ve had so many meltdowns ... they’re exhausting but good to get out all the angst and tension. Things do catch up eventually... it’s hard trying to grasp what is happening and adapt to changes ... there’s the worry gremlins too. This is why it’s a rollercoaster...no fun though.
Clear margins are good and the one node is out also... others were clear so good too. I’m presuming your grade was different at biopsy. Things are certainly happening quick but perhaps that is good...at least you will know soon what your plan is. I guess they’ll go over benefits or not of chemo, tell tell you about the trial as it’ll be up to you if you go on it .... I can’t really remember the name. I started letrozole over a month ago..I’m post menopausal. The helpline is good..I’ve used it once in the early days and I’ve used the email.
Pleased you’re on a bit of a more even keel today.
I think I’ll be back to my first instinct and no recon. Can’t persuade myself as yet to have a foreign body stuck under my chest muscle leaving me with an immovable object there .. that’s my take on it anyway. Big flap op ... can’t do that. My other boob will probably look bigger than it is if I’m flat on one side. Just want it out of way, quick recovery and have a break... that’s if histology ok !!! Will I get lucky this time I ask myself Anyway I’m calmer than the last 2 weeks. Just a long time waiting. In hindsight I should have had op done weeks ago with another surgeon instead of waiting for mine to be back from hols. Hey ho.
Hope your OH is doing ok.
weve had some rain here and expecting more later... lovely.
sending hugs xxx
Hi Jean.. Feenix
Results were a mixed bag. Worse grade than expected (grade 3) and nodes were not clear however only one out of four taken involved and they managed clear margins on the surgery so I'm officially clear of cancer. They're still not hanging around and I have an appointment with the oncologist on Tuesday to discuss the next stage. It's just over 4 weeks since my initial appointment. Chemo has been mentioned (but with a very low %age benefit) and the possiblity of a radiotherapy trial. I also know I'm definitely getting hormone treatment as I'm ER and PR + (8 for both) but not HER2 but still don't really know what happens next treatment wise.
Everything finally caught up with me yesterday and I went into meltdown before my appointment. I ended up ringing the helpline and they were brilliant. I'm back on a more even keel this morning (as much as you can be with bc) but I'm sure it won't be the last meltdown.
How are things with you? Have you come to any decisions yet re recon?
Tina ..Marmite67 .. I’ve got fingers crossed for your results tomorrow. My op deferred til next week... I’m rethinking recon as I’ve been so up and down these past couple of weeks even tho I started off wanting the simplest route and thought I’d got my head around being flat..... last saw surgeon 5wks ago due to hols but went in to see her today. If I decide to try implant and if I really can’t stand it I can have it removed... so I’m considering, I was told it’s best to take my time. I’m not for chemo and am low prediction for rads.
You’re right, the waiting is the hardest and I’ve had too much time to think. Surgeon was on holiday so I sent OH off to see family. In hindsight I should have had op done a few weeks ago... I could have had a different surgeon. Hindsight is a wonderful thing.
You’re right about recon. It’s a big decision. I’m not keen on an implant and having a big complex flap op is quite daunting and I’m not sure I want that with all it entails. My bcn said that recon isn’t a “one stop shop” ... there’s always more to be done. I would hate to think I persuaded myself to have recon and it failed or I just wasn’t happy with it. Once it’s done that’s it. Living flat you can see how you manage and adapt. There are women who don’t bother with recon after a period flat as they’ve found it’s ok and also don’t want further surgery. Women who do have delayed recon are apparently the most content with results. Going with your gut instinct was the best way and recon is always available to revisit in the future. How are you getting on with the comfie now your seroma is drained ?
Im in on your results day. Glad your OH is on his way back.
Lots of places to walk... seaside a sort drive away and public footpaths/ bridleways around through the fields... it’s quite rurally in Lincolnshire. I originate from the northeast tho. It’ll be cooler later so will get out and stretch the legs. OH would like to take bikes to Sherwood Forest but will have to wait a little while now.
Sorry to hear your mood is swinging about and you've not managed to get out walking much. Do you have lots of good walking routes where you live? My dogs have been brilliant and not knocked into me once. I do have a 3 acre field where they can let off steam though so that's helped.
The waiting is the hardest bit I think. I was lucky that I didn't have much time to think/worry. I'm fairly certain that I'll stay flat at least while treatment/recovery is happening but never say never. I think recon is a tough decision to make in advance as it's almost impossible to know how you'll feel until afterwards and there's so many things to consider. I went with my instincts in the end.
The seroma decided it was a problem by waking me up several times last night so I went off to the clinic this morning and had it drained. Apparently everything is healing well. OH is on his way back home now so will be able to come with me on Thursday.
Hope everything goes well for you (not sure which day you're having your op).
Great that you feel nearly back to normal. It was good timing that you were able to drive when OH went back to work. Will he be able to get back for Thursday?
Good that your Seroma is not problematic... think they reabsorb over time although your bcn will have given you info. I’m having some mood swings ... I remind myself of that movie High Anxiety at times !! I’ve not been getting out walking so much lately either. Wish it was over. I’m still heading towards the unconstructed path. Thinking of recon does my head in. Might you think about it later or do you think you’ll be fine as you are?
Hope you’re getting out for walks. Are you managing your 2 boisterous dogs ok?
Yes results appointment is Thursday pm. I'm about 95% back to normal after surgery. Got some fluid sloshing around the breast area so it looks like I have a small breast but not causing any problems. OH went back to work on Friday which was a significant hurdle as he works away from home. Fortunately also on Friday the BCN agreed that I could drive short distances so I wasn't stuck at home on my own.
How are you feeling about your surgery? Did you come to a decision about recon? Hope you're doing ok too.
Hi Tina .. marmite67... just had a thought that you may be getting your results end of this week. I’m presuming they say 2 weeks where you are. Fingers crossed for them to be good.
Hope you are doing ok ... getting out with your dogs and OH.
Claire.. hope you’re doing ok after surgery
Belmont Rosie .. you’ll be having surgery next week. Hope you are ok... keeping busy.
Jazza .. thinking of you.
Tina ... hope you’re having a better day today
Hi Tina .... post where you want to.... I didn’t want to confuse things. Continue conversation on the May thread if you want as we are there as well. Don’t think it makes a difference as long as we’re all chatting together.
I think it’s all too easy to overdo it but do hope you had a canny day for your husbands birthday. I have to say I’ve had many wobbles, mini and major, since I was diagnosed end of March. They’re normal and I think what we’re going through just catches up and we have to let out our emotions. It’s quite normal to be emotional after surgery too.
I remember being numb for quite some time after my first op.. surgeon put a lot of local into my wound... only used paracetamol/ibuprofen after it wore off.
Great that you are ok with mx. Getting out to garden centre sounds good although take it easy. It may be that nobody really notices nipple or missing boob especially wearing cardy or fleece. They should be fine to give you confidence when out and about without bra/comfie. I’ve read that wearing layers is good and dark/black clothing with a busy pattern works well to disguise flatness. Using scarves also. I’m in b cup bras although I’ve fit into a - d depending on make, but I don’t class myself as “big” so would hope I could get away with not using comfie if need be. I quite often just wear pull on ‘bra’. I’ve got a couple of vests with secret support to try. I think I’ve only got one scarf, apart from shawls like pashminas which I do use quite often, so may have to get a few more.
My surgery is in a week. I may get home on the night if not, the next day, with drain in tow.
Hope you’re managing the exercises ok. You’re doing really well.
Sorry I'm not experienced with forums so don't know the etiquette. I didn't mean to confuse things by posting in two threads.
Recovery so far has been relatively easy. Today has been the worst as the feeling is starting to come back so have actually needed the painkillers but only ibuprofen and paracetamol. I was also slightly worried by my wound earlier today as it was weeping slightly but I've had it checked out at the GP surgery and it's fine. There was some confusion as I wasn't given any discharge paperwork so didn't know if I had stitches to be removed. It turns out it's been glued and steri stripped so they're going to look at whether the steri strips need to come off.
I would definitely say take it easy. I think I over did it particularly yesterday as it was my husband's birthday and I'm suffering slightly today both mentally and physically. I had my first serious wobble since diagnosis this morning. I've still got a lot of swelling around under my armpit and in the front of my shoulder which makes wearing a bra slightly uncomfortable and I do find the comfie puts slight pressure on my wound so I can only wear it for an hour or two. My BCN said to wear it as and when I felt comfortable. I've not got any bruising yet. My change of appearance hasn't bothered me or my husband one jot. I'm planning to go out tomorrow to the local garden centre and doubt very much I'll bother with my bra/comfie. The only thing I'm slightly conscious of is my other nipple has a habit of showing itself when I'm not wearing a bra. I tend to wear a cardigan or zip front fleece hanging open to hide it which is pretty stupid when you think about it. I'm sure most people are probably more aware of the lack of breast than the sticking out nipple. 🙂
Sorry for the long answer. Hope everything is good with you. How long until your surgery? Presumably not long if you've just had your pre op.
didnt know whether to continue on May thread or come back on here !!!
Sounds as though you are doing well post op. The phantom pains/itches sound weird but as you and Kip say they are normal. Nothing was mentioned at my preop this morning about that. I’m still heading towards mx and no recon. How have you found your recovery so far and have you coped ok with your change of appearance? Any hints and tips? I’ve been given post op front fastening bra and comfies (2 different sizes)... actually bra is a bit loose so will have to go back and see if I can try a couple on. It’s all Amoena so expect that’s the usual gear supplied.
Ive been told to take it easy, no lifting for 2 weeks, do exercises and just be aware I’ll be bruised. How is your wound site? I know my surgeon likes a pressure dressing to help minimise bruising.. don’t know if that’ll be the same this time.
I do hope you’re having a good day
That’s great Marmite67. You’ll be feeling more comfy without the drain I’m sure. Everything crossed for your results. Xx
Just waiting on my lift to go home. Drain is out and everything is looking good according to consultant. Results in 10 days.
Claire hope all goes well for tomorrow.
Marmite67.... So glad your recovery is going well so far. Make the most of resting up although you’ll have stared your exercises yesrpterday!!! How are you feeling ?
Heres hoping you get home tomorrow.
Thanks BR, it’s incredible isn’t it how you can be dumped in this big cycle and left to fend for yourself. Especially when you have no idea as to what you are even meant to be doing. X
Marmite67... you’ll be through the other side of surgery ... hoping you’ll have an uneventful recovery and get home after the weekend..... xhugsx
Claire ... Will be thinking of you next Tuesday ... let us know how you are. Post on here whenever you need to and we’ll help each other along xx
Hi Belmont Rosie.. you’ve definitely been busy. Pleased you’ve got sorted regarding your surgery ... let us know how you do. Xx
Hi Claire, sorry you find yourself here again... plans do have a habit of changing with histology don’t they. I too had wle originally followed by re excision and now find I need a mx. I’ve struggled thinking about recon though. I see you have experience of mx/recon before but I’m presuming you didn’t have chemo or rads last time but correct me if I’m wrong. It’s good to be on here, we can give each other support, listen and are able to say how we feel, have a rant if need be or just general chit chat. Pleased you’ve got lots of contact with your family. Hope you’ve got some help in place for post surgery and further treatments. Hugs xx
Hello Minniem, so sorry to hear you are struggling to get clarity on your next steps. If it’s any consolation, I’ve also found - at Guys, which is one of the top cancer hospitals! - that I had to chase up appointments including for scans. The sequence for me was 8 sessions of chemo (4 docetaxal, 4 EC), then a week after the final one MRI and ultrasound scans to see the effects (but I had to fix these up myself), then meeting with the surgeon a further week later. The actual surgery will be a further 4 weeks after that, ie 6 weeks after final chemo.
The good thing is that you should feel more like your old self about 2 weeks after chemo, both in mood and energy, so hang on in there - you will be making progress, even if it feels like at snail’s pace! And if you end up having a few weeks without hospitals, just take the time to do things you really enjoy...
Big hug in the meantime, BelmontRosie
Thanks Feenix, and I hope all your plans for surgery are now also coming together. Just bought myself a nice Royce front fastening bra and jazzy pyjamas today as my own surgery is in two weeks! And have been spending time keeping very busy, going to exhibitions, riding my bike and generally doing stuff at home. Slightly madly, we have just had the house redecorated so rehanging curtains and putting books back on shelves has meant I’ve hardly had time to think, but generally I reckon I’m just getting more reconciled to the whole idea of one-sided mastectomy. My surgeon is kind and has persuaded me to do immediate reconstruction - there’s something reassuring in just recognising his expertise which all helps.
Thank you so much for your kind words, really helpful just when I needed a boost. Hope I can do the same for you sometime!
Big hug, BelmontRosie
Hi, I'm new too, never done anything like this before so bear with me please... I had a lumpectomy couple of weeks ago as all the scans etc. had shown 1 smallish lump but my results showed no margin, other tumours and lymph nodes affected so I'm back next Tuesday for an mx, which will be followed by chemo then radiotherapy, just about starting to get my head around it, as I had a mastectomy with immediate reconstruction 12 years ago, this time can't have immediate reconstruction unfortunately. I've not been able to talk to anyone about it as I'm a private person, and live alone but with lots of contact with my family, so to find this forum with ladies with similar experiences, is great, sending my love and hopes to all of you x
Hi Jazza.. hope you’re doing well after surgery. I know the waiting for results is bloody awful ... sending a gentle hug xx
I was within the 2wk mark from referral but did have to wait 5 weeks for my first results, got it down to 3 weeks for my second lot. I was told about recon, and given reading material, but it just caused me more stress... I just needed to get my head round having to have a mx first. I know I’m not keen on an implant and don’t think I can put myself through a long complex op right now.
My husband is great too... not phased by mx.
Ive been told I’ll be in overnight but if I was ok and itching to go I might get out later in the day.
I can see why you’d be happy being in hospital over the weekend with your boisterous dogs being at home .. they sound very energetic.
I think it’s quite normal to be nervous. I know I will be. I do hope all goes well on Friday and you have an uneventful weekend in hospital and recovery when at home. Do keep us updated with how things go and how you are doing. Keep in touch beforehand if you just need to chat.
Hi Jobey and Feenix
Thanks for the welcome. I've already had a wander around some of the threads since my diagnosis. I waited 5 weeks from urgent referral for my initial appointment (I'm in Scotland so 2ww doesn't apply) so I think my consultant took it as a challenge to show how fast things can move. I went for biopsy results last Thursday having been told to expect chemo followed by surgery to be told I was booked in for mx the following Friday. All I know for certain is it's provisional grade 2 and hormone receptive (or whatever the terminology is - it's a whole new language).
Feenix your assumption is correct. No recon atm It was just one too many things to get my head round. What about you?
So far everyone I've told has been hugely supportive and my husband has been a total rock so I know in that respect I'm very very lucky. I will admit to starting to get a little nervous now. The anaesthetic doesn't bother me as I've never had a problem yet. I already know I won't go home the same day. Although I'm going to day surgery they will be transferring me to the oncology ward for the weekend which apparently is a great place. I'm kind of relieved as I have 2 young boisterous dogs at home.
I'll try and report back next week on how things have gone and thank you again for the welcome.
Sorry to find you have joined us but a very warm welcome.
Things seem to be moving along quickly for you. I’m presuming you’re not having recon but correct me if I’m wrong. I’m for mx later this month. If you want to ask any questions, let off steam, say how you feel just go for it. There are lots of supportive lasses around and we are a friendly bunch. There’s always the May/April surgical threads you can look back through as well.
Down days are certainly the norm ... there’s just so much to take on board and it can feel quite surreal at times.