Post op results...not what I was hoping for

[UltraSue]

Hi Sue Pat

everything you’ve said is so true - we all have our stories and it’s somehow reassuring that we aren’t going through it alone.

Although it’s not normal these experiences are not unusual and in some way it makes me feel better that I’m not the only one getting these setbacks during this scary time - although I must say I wouldn’t wish it on anyone else!!! 
but the whole thing about sharing the experience takes the scariness and anxiety away a little bit. 
I am 4 weeks after surgery now and have good movement in my arm although still have pain in chest area and the constant bee/nettle sting feeling but that’s subsiding. I’m just hoping my next operation on 7th September won’t set me back too much and fingers crossed my arm movements won’t be too restricted. 
 hugs from Sue 💕

[UltraSue]

Hi Jukat

so sorry to hear your experience, you have really been through the mill - I had my drain in two weeks can’t think what you’ve gone through must have been awful for you! Ive got another op now on the 7th sept so that  will mean another drain - my last drain site got infected and I was quite poorly and needed antibiotics.
I hope after all this you get a bit of good news and your surgeon is able to get you sorted - sending you big hugs and hoping you get through this without any more problems! 

All the very best 

Sue 💕

[Sue Pat]

Hi #ultrasue #jukat and others following

Everyone's story is different but ultimately the same. things don't go smoothly and new scares keep cropping up we just have to try to be strong and support each other. I've been on antibiotics for 7 days due to an infection in the wound. I'm worried because I finished the course yesterday but the site is still red and hot to the touch. and as always it falls just as week end starts when you can't get hold of anyone but my problems pale into insignificance with your experience Julia. I hope they get on top of this quickly for you but don't be afraid of the cancer, it can spread quickly but we're normally talking months not weeks.

Don't give up on the exercises they hurt at first but they do work and you will find that the pain you feel before you start and the pain while you are doing them all reduces once you've finished. I was told do 3 times a day but I don't have enough hours in the day so I've been doing them twice a day I'm 4 weeks out SMX no reconstruction and today I did them with almost no pain, yesterday I was thrilled to find I could reach my seat belt without pain. So keep going everyone.

Most of the pain has gone under my incision but my stomach still looks bloated and weirdly if I measure under my bust, as you do for a bra size, I've lost 3", which is now sitting lower down. I don't understand why or how and I'm more unhappy about that than I am at losing a breast because I look awful!

Finally the good news is my Oncotype came back low risk so I should only need anti hormone treatment, the side effects don't sound good but like I said we are all different so I'll have to try and see how it goes. I sailed through the menopause so maybe they won't affect me. Or maybe that's why I now have OR+ breast cancer. There's still a lot to learn.

Take care and good luck everyone

Sue xx

[Jukat]

Hi ladies...hope everyone is bearing up and feeling more comfortable 💕

I have only just found this thread and it rings so true with me.

I am almost 6 weeks post mastectomy / SNB and it hasn't been a smooth ride.

They started a delayed reconstruction by inserting an expander during my mastectomy. I then developed an infection about 10 days post op, which I honestly can say made me feel so ill. There was puss constantly filling my drain. Anyway 2.5 weeks post op I had to have another surgery to remove the expander and wash out the wound. The surgeon inserted some surgicel (material to absorb fluid) and I still have a lot of leakage. Had my drain out last Friday after 5 weeks (what a huge relief because it was so uncomfortable!) and now they have put a stoma bag over the wound site to collect any fluid....and yes there is still fluid coming out....I mean, there's not much more can happen to make me feel more disgusting!

They took 3 nodes during my initial surgery, which all came back positive, so I was scheduled for an axillary clearance a couple of weeks ago, though that is now delayed because of the infection and because the surgeon said he cannot proceed until its all healed as if this infection gets into the node area it can be life threatening. So I still have cancer and no idea if this delay can cause a spread and this absolutely terrifies me.

On another note, there is some limitation in my arm, I can't seem to lift my elbow higher than my shoulder and it pulls across my chest if I extend to far....think I just need to do more stretching exercises and I too have noticed my abdomen seems bigger! I have been complaining to hubby about this saying he's got to stop buying treats....but with you all saying the same it must be because of our situations....and I'm not having any doctor saying it's just because you can see it now....how can he explain me not being able to button my favourite top?! 😄

Anyway, onwards and upwards...let's fight this together, we are warrior women, strong and brave...or so everyone keeps telling me! 😊

Julia x

[UltraSue]

Hi Sue Pat
 I had five lymph nodes taken when they did the mastectomy but the ones they took were all clear except one which had got attached to the tumor there were traces and I think my surgeon is now being super thorough taking the rest out on the one side just to be sure - and he’s sending them off to see what the likelihood of it recurring - I am thinking it’s better to get them out and be sure as I’d always have it in the back of my mind that it was still there. 

Yes I had exercises and I’ve been doing them regularly - I have good movement at the moment although still quite numb in places - but I think once I have them all removed I may be a lot stiffer and he did say he may have to cut a nerve which he can’t avoid so may have permanent numbness under my arm - also I’m very scared of getting lymphodema. 
I am in some pain at the top of my stomach just under the mastectomy site - it seems to swell up when I’ve been up and about for a while and only subside if I go and lie down or go to bed at night - so if I’ve overdone it in the day my stomach is really swollen up. My stomach was definitely not as extended as it is now as I used to go to the gym before lockdown and swim as well and never had a flat stomach but never swollen like this.

I am also trying to cut down on the painkillers but finding as soon as I do I’m getting a lot of pain coming back and this in turn is making me feel quite down - probably with the next operation looming over me too isn’t helping, but I really don’t like taking tablets and don’t think I’ve taken as many as this in my whole life before. 
just hoping that I get this op over with and really start to feel better then before I have to have any more treatment.

hugs from Sue xxx

[Sue Pat]

Hi UltraSue,

You're really going through it!

They sent my lump away for the Onco test and took lymph nodes at the same time as the lump. I'm surprised they didn't do that with you. Is it because they found more than expected? I found the district nurses very uninformed and there was no continuity I had 5 different nurses in 6 days and they all had different ideas and different ways of working. Some arrived in full PPE some had none, some washed their hands some didn't. They also refused to remove the drain, which the surgeon said they were supposed to do but mine was only in for a week, my nurse told me to come into the clinic and get it removed. I think the care you get is an absolute lottery.

Did they give you exercises to do? They are painful to do at first but I found they really helped with the paid. Sounds odd I know but I get up in the morning in paid, do my exercises and it's better. I think it frees all the area up a bit.

Good luck with your next op

Sue xx

[UltraSue]

Hi Sue pat

I had a leak in the drain area two days after my op but the district nurses wouldn’t  change the dressing until ten days later - hence I ended up with an infection and I needed antibiotics too - I told them it was smelling bad and really painful but they told me the consultant wouldn’t allow them to change the dressing!! - I’ve had the drain out now but had it in for over two weeks and I think this has added to my overall discomfort - a week after my op I felt so ill and just thought this was a normal thing to go through as I had no benchmark! But obviously it was the infection that was causing it. I’ve never had a big stomach and mine is definitely very swollen compared to normal, so I wouldn’t be happy if I was told my stomach had always been like that but I’m only noticing it now!!! My next op is 7th September so I’ll definitely be checking for infection this time. My scar is healing fine but it’s just the uncomfortable nervy feeling that cuts across my chest especially when I lie in bed, and painkillers don’t seem to block it. 
Im just it will get better before the next op and I don’t experience even more pain.

hope you don’t have to go through too much more treatment 

Suexxx

[Sue Pat]

Hi UltraSue,

I saw the surgeon yesterday and mentioned my swollen abdomen but he was really patronising. He said oh all the ladies say that it's because you couldn't see it before because your breast was blocking the view. I'm sure he's wrong because it was a week after the op that I first noticed it not immediately after and I also have an infection in my wound and my abdomen is sore to touch so I think there's a connection. Anyway I now have antibiotics for the infection so we shall see.

Do you have any redness or warmth around the scar? If you do get it looked at fast, it's very common to get an infection and it needs to be caught early. Seems to me you shouldn't be so uncomfortable after 3 weeks. I'm at about the same point and up to the infection things were calming down nicely.

Good luck xx

[UltraSue]

Hi 

I’ve had my mastectomy 3 weeks ago and my stomach is really swollen too, it feels so uncomfortable and very sore underarm like thousands of bee stings. I also have pain where my the scar is healing and a really uncomfortable feeling when I lie down so I’m sitting up in bed with loads of pillows propping me up. Unfortunately I’m having another operation in three weeks to take the rest of the lymph nodes and they are being sent to America for Onco Typing. Although horrible and worrying it’s actually some relief to hear that someone has similar symptoms as me. xxx

[LMitchell]

Dear Lisa

I hope you are doing OK. I had my invasive diagnosis on 15 June - 11mm tumour they thought. On 12 July I opted for full mastectomy which I was pleased about as they removed 40mm tumour and high grade DCIS, also 2 out of 4 lymph nodes were macromestates (not sure on spelling). So yesterday 17 Aug they went in for a full axillary lymph clearance. they have said the next step is chemo and radiation but not sure in which order so will here at the results meeting in 3 weeks. Also is any of the clearance nodes shows cancer cells they will recommend at CT and bone scan. I am hormone positive and HER2 negative, so that is a 'good' thing in my eyes. It is a long way from the initial diagnosis of small lumpectomy on 15 June. That is the thing with cancer, keeps us on our toes, and no two cases are the same. 

I personally find knowing as much as I can all the different scenarios is a great help and my docs and nurses have been very good at humouring me with this and telling me everything I want to know. I hope you are finding your way along this road, and remember we are all here for you.

Stay strong, we are all here for you.

[Sue Pat]

Hi fellow sufferers,

I got good news on my lymph nodes, although there were signs of the start of something they didn't have cancer cells. So I thought all good news but apparently I might still have to have chemo and or hormone therapy, which was a bit if a blow. I find out a week on Friday. Apparently they send my sample to America to test if it's high or low risk so fingers crossed.

I've been doing the exercises but still very stiff and I have a massive swollen abdomen, which is sore to touch. Anyone else had this? I see the surgeon on Thursday so I can ask him then but it's not helping my body image!

I find I'm not that self conscious about my lack of a breast, in fact I've been out a few times now with no bra or padding and not worried at all 

Hope you're all coping with whatever this new life throws at you.

Sue xx

[louby_lou69]

I’m healing well, just keep getting odd twinges and a heavy feeling, presume it’s everything healing. 
I have an appointment on Friday for results x

[Lisa65]

Hi @Wendy_ and @louby_lou69 I had my first appointment with the oncologist today and she confirmed that next steps will be radiotherapy and then tamoxifen for 5 years. The team are confident that will be enough despite the tiny trace found in 1 lymph node,  so I just have to trust them!

So planning session next week for the radiotherapy. The wounds seem to be healing OK and aren't too sore, though my underarm is very uncomfortable. I do still have pain in my left breast where the larger tumour was, but apparently that's not unusual after the type of surgery I  had.

Hope you are both healing well?

Lisa

[Wendy_]

Hey Lisa,

Really sorry to hear your news. It's a minefield isn't it - you get through your surgery and then there's another assault to tackle! 

I'm already wondering if I should have asked for a bilateral mastectomy to include my apparently healthy (but packed with cysts/glandular tissue) breast, rather than losing and rebuilding just one. 

It's so hard to take in all the new information and to feel like we are making the 'right' decision...good luck with your meeting on Monday, hopefully you have time between now and then to prepare all the questions that you have so that things feel less uncertain. Good luck!

[louby_lou69]

@Lisa65 

Hi Lisa, I’m doing ok and recovery is good. I had a hysterectomy in 2017 and this is a much easier surgery to bounce back from.

I wonder whether the results will be back sooner, they told me 2 weeks for my biopsy and I had an appointment in a week so hopefully this might be the same. 
I might actually go a week without a visit to the hospital 

L x

[gillieb]

Hi lisa

her 2 not changed - only just got the result!

Did think about trying a different hospital but we r rural so would b a lot more travelling. I’m probably just being a bit silly.

Need to take things one day at a time.

thanks for the reply x

[Lisa65]

Hi @gillieb sorry you've had a shock too...I didn't know that 'her' status could change!

I don't know how these things work, but can you transfer to a different local hospital? When I was diagnosed I had the choice of 2 local hospitals, but I am in the south east where there are a lot of different  nhs trusts.

Take care

Lisa

[Lisa65]

Thanks @Sue Pat, I hope you get your results soon and they are good. This week I have been so up and down emotionally that it's more exhausting than the physical side! I need some mental health exercises to do alongside the physical ones🙂

[Lisa65]

Thanks @louby_lou69, how are you feeling? Sorry to hear you have to wait so long for your results

Lisa

[gillieb]

I also had 1 positive lymph node found out of 3 taken. I had dcis with micro invasion. My plan has now changed as also found to be her2 pos. waiting for ct then bone scan then oncologist review.

Its all been a shock! I also work out of this area of the hospital which is also adding to my stress. I am a private person and all my colleagues will see me going through treatment.

take care, be strong.

[louby_lou69]

@Lisa65 Hi, so sorry the news you got wasn't what you hoped for. I've been told not to expect any results for 3-4 weeks as pathologists are thin on the ground.

I know I had 3 nodes removed, they only planned on removing the sentinel node but my surgeon told me they took 3 as one looked suspect. I plan to ask about this when I see her later on this morning for my post op appointment. She did talk to me after the operation but I just wasn't listening properly.

I know I'm having chemo and radiotherapy so have been able to get my head around all of that. I'm dreading the chemo but it must be done. Keep us updated on what they decide to do next

Lou x

[Sue Pat]

Hi @Lisa65 

I'm so sorry to read this. I'm awaiting my results after an SMX for IDC and I'm not sure how I will respond if I get the same news as you. Be strong and keep fighting, easier to say than to do but these sites are so helpful to hear others stories, get tips and know you are not alone.

I've been scared by the number of people who have had treatment for DCIS on one breast only to find that a) it has spread (I was told it didn't when I was diagnosed but it has) and b) that it's present in the other breast but hasn't made itself known. I've read of people opting for a DMX, even though cancer has only been spotted in one breast, I wasn't given that option and even if I had I think my lack of knowledge would have caused me to say no. Now I feel like I have a ticking timebomb on my left side and wish it was gone!

Take care try to keep positive and let us know how you get on.

Sue xx

[Lisa65]

Thank you all for taking the time to respond, it really helps to not feel so alone.

@Jaybro you make a very good point about the purpose of lymph nodes and mine having done its job, thank you.

I'm going to do my best to try and put it out of my head until Monday now, when my MDT meet to discuss the treatment plan.

Lisa

[Jaybro]

Hi Lisa

The mention of infected lymph nodes seems to terrify most of us. But think about it - what are lymph nodes for? To halt the disease cells in their tracks. So your one lymph node has done exactly what’s expected of it and it’s unlikely any cancer cells have spread - you have plenty more lymph nodes still waiting. It’s when the proportion of infected to not-infected nodes gets big (I had 19/21 - chemo essential) that it’s riskier.

If you do have chemo, which is possible, it’s unpleasant but it’s manageable and it’s worth it if it means your cancer is cured. But it does sound as though your type of cancer and its stage won’t necessitate it. Straight to radiotherapy sounds a lot nicer. It’s awkward, some people get side effects (I found it a doddle after chemo wiped me out) but my oncologist said the evidence shows it is the most effective of all the treatments. So I hope that’s your treatment plan and you react well to the radiotherapy.

All the best xx

[Kitkat23]

Hi

i too had one unexpected node involved and had previously had DCIS in other breast....my treatment plan changed immediately to chemo....not worth the risk my oncologist said....also had to have the 3 week chemo instead of 1 week..... hope all goes well 

[Susanmanchester]

Just a heads up they may advise chemo ....I had micro metastatic in one node technically clear but the advice was to have chemo . Had also had full node clearance previously which is no picnic but in time it gets better. You may not have to have either of course fingers crossed x 

[Lisa65]

Posting in case anyone has had similar as I'm having trouble getting my head round this!

I had my post op appointment yesterday, all OK with wounds etc and margins were clear. However 2 shocks, first, one of the 3 lymph nodes they took had cancer traces and secondly they found and removed a 10mm DCIS in what we thought was my healthy breast discovered during the planned mammoplasty reduction for symmetry. 

The second apparently means I am eligible for gene testing which opens up a whole new world of stress and decisions to be made.

But its the news about the lymph node that is really worrying me. They will decide on Monday at the MDT meeting on treatment, surgeon yesterday spoke of radiotherapy and hormone treatment which was the plan anyway. But I guess they could also decide on a full lymph clearance.

If anyone has had similar results re the lymph nodes it would be really helpful to hear what was done.

Lisa