I’m 4 weeks post double mastectomy and expander implants reconstruction. I’m still in lots of pain and have had Seroma drained on one side under ultrasound. I think it may need draining again and will contact the breast care nurses. I just wondered if it’s normal to have this much discomfort and pain for so long after op - there seems to be no let up although I am sleeping better with the codeine albeit propped up with pillows.
The medical care I have received has been very good but since my two week check up and fluid drain, I have no further follow up until I see plastic surgeon in March. It seems that there is a gap in the aftercare and down to the patient to raise any concerns. The problem is knowing what’s normal and what's not.
Has anyone else suffered fluid retention after mastectomy?
Thankyou for sharing your experience, it was very useful to hear and echoes my concerns about having radiotherapy as opposed to mastectomy. I see my surgeon this week and will definitely opt for single mastectomy, and will have to see their response to the idea of double.
I can fully understand your dilemma and hope you are OK. Chemo is so aggressive.
I’m still quite sore as I have some painful fluid retention that I’m having drained on Monday under ultrasound and the expanders and ports are very uncomfortable at the moment. I’m not sleeping well and even Tramadol is not giving me much relief!
Your question gave me much thought as it wasn’t an easy question for me to answer. When I had BC in 2003 I was only 41 and my life was very different then. My consultant was confident that having a lumpectomy followed by chemotherapy and radiotherapy followed by 5 years on Tamoxifen would be enough to prevent it reoccurring. However I have had many false alarms over the years since and with every mammogram had that anxious wait, even though neither of my breast cancers have shown up on mammogram, only by ultrasound!
This time around they thought it may be tissue scarring from radiotherapy and even the initial core biopsy came back inconclusive but with suspicious cells. My consultant decided to do a lumpectomy last September and the biopsy showed it was indeed a malignant tumour. He then recommended I had a mastectomy. I also had a genetics test as some of my relatives had had BC, but thankfully it was negative and I didn’t have the hereditary gene mutation.
It was my decision to have both breasts removed as I didn’t want to go through a future of uncertainty, worrying about whether it will return again in either breast.
So, my answer to your question is that I would have been devastated to have had a mastectomy years ago but it wasn’t even offered as an option. However, with hindsight it would have been the best decision to have had a double mastectomy and reconstruction had I been offered the choice. Although I was extremely upset and worried about having it done this time, I knew for certain it was the right course of action.
In my circumstances, by electing to have the double mastectomy, I won’t have to have chemo or radiotherapy as thankfully all my tissue and lymph nodes came back negative/benign. I have also been told that I can now come off the Letrozole drug if I want to and that I won’t need to have any more mammograms as I have no breast tissue there.
I still have a way to go with the reconstruction but can now move forward with a positive mind and look towards the light at the end of the tunnel.
I’m not sure if my experience has been of help to you but I wish you all the very best with whatever decision you make and your forthcoming treatment.
Hi Nicki, hope you are feeling a bit better, you sound a strong and positive person. I'm not in same position as you, but I am considering mastectomy after chemo finishes as opposed to radiotherapy. Had lumpectomy last August. Given your experience would you have considered a mastectomy as opposed to lumpectomy if you were given the choice?
Thank you for your message. I hope you are Ok. It’s so good that you have the support of your husband and it must be so difficult with your gorgeous little boy who I bet wants to give you cuddles. My husband has been wonderful too and we mustn’t forget that it’s hard for them too.
I spoke to one of the breast care nurses at the breast clinic who recommended RECO bras. I ordered one and it came next day. It was quite pricey and although it is lovely and soft and adjustable, I am too sore to wear it 24/7. I’m having my dressings removed this afternoon and dreading it but will ask if I should be wearing the bra more with the expander implants.
You’re absolutely right in that we have to take each day as it comes as each day is different but also focus on the light at the end of the tunnel.
I will get my biopsy results next week when I meet my consultant for post op follow up. I think he found a node and took it with the breast tissue. I had some removed 17 years ago so he didn’t want to take all the remaining ones for risk of lymphodema.
I hope your recovery doesn’t take too long and wish you all the best for the future.
Hi Helen it’s quite a journey you’ve been on and I know I have only just begun mine. I’m having my dressings removed this afternoon and as I’m still in lots of pain I am dreading it!
My plastic surgeon said he won’t see me for six weeks when he will top up my expanders to 600ml in one go as he’s left enough room? He did say that I could then decide whether to keep the expanders in and have the ports removed or to have them replaced with silicone softer implants. He also said he would do liposuction to fill in any nooks and crannies with fat. Silicone implants seem to be the more comfortable option.
I joined our local Keeping Abreast group for ladies having or had reconstruction and one lady showed us her 3D nipple tattoos that she has just had done 2 years down the line. They were absolutely amazing and looked just like a normal nipple and you couldn’t tell they were flat. Hence everyone took details of the tattooist who carried the work out. 😃
I bought a Reco bra and although it’s very soft and comfy i am too sore to keep it on 24/7. I’ll ask nurse this afternoon if I should be wearing it more for support as no one has advised me. It seems there is a lot of support out there available but you have to chase it sometimes.
I go back to see my consultant next week for biopsy results and checkup.
Thank you for getting in touch and sharing your story it really does help. I hope you’re next phase goes as well for you and you get the size and shape you want. I’m sure you will.
how are you doing?
i haven’t had your surgery but I am post op 3 days from thearapeitic mammoplaysty and sentinel node bx
i am also sore and feeling quite emotional.
re the bras I was told to wear mine for the next month day and night.
Could you ring your breast care nurse?
hope you have plenty of support at home.My husband has been amazing and we have our gorgeous little boy he is only 5 but he’s been looking after me.So hard with him being so young.
i think what I’m finding is just to go with however you’re feeling and take one day at a time anything else is just too much isn’t it.
hope you feel better and recover soon lovely x
Hi Nicki - I just finished doing a long reply to you and its disappeared! So I'll try again and hope my original reply doesn't somehow end being posted so you'd have 2 for the price of 1. 🤣
I was diagnosed with IDC and DCIS of my right breast in August 2018 and had a right sided mastectomy at the end of September 2018 with a tissue expander implant. Like you there was a small amount of saline inserted in the expander in theatre. I then had weekly 'fills' of 50cc of saline each appointment for 6 weeks, until it reached the appropriate size.
At each fill as the skin was being stretched it did feel sore and uncomfortable for a few days, but I only needed to take a couple of paracetomol, and they did the trick.
I had my last 'fill' in November 2018 and then had to wait for 3 months for it all to settle into place and went back in February 2019 to see the consultant, at that point I was put on a waiting list to have the exchange surgery - to get the expander exchanged for a more softer natural silicone implant. I was told it would be 3 months to wait for the op but it ended up 6 months! I was at my wits end by this point as the expander never really felt comfortable, it always felt hard and the port was sticking in me and I was aware of it constantly.
I was phoning the hospital every few weeks to see if I was any higher up the list to get the exchange done - but as it wasn't seen as urgent I was told it would be when it would be. It was only after I had a complete melt down on the phone that things got moving and i had the exchange surgery in August last year.
I was so relieved to have the expander gone and the new silicone implant is much better, softer and more natural The breast still doesn't look too great in my opinion, as I have a lot of puckering and large dent in it - but its better that still having cancer, so I'm grateful for that.
I have an appointment next Wednesday with the cosmetic surgeon to see about having a reduction and uplift of my left breast, which will hopefully give me some symmetry - as I'm VERY lopsided at the moment, he might even be able to do something about the puckering and dentin my 'new' breast if i'm lucky.
I also want to eventually have a new nipple created or tattoo'd or something - but I'm taking one step at a time.
I'm on letzerole, too, and will be for 5 years (well another 4 years for me now - 1 year down and 4 to go👍)
It's perfectly normal to feel sorry for yourself - I still get periods like that now - so if you need to cry or rant - go for it - you're entitled to it I reckon.😍
I feel like its all taking forever, but I'm getting there. If I can help any further let me know and keep us updated with your progress.
Take care and stay strong.
Lots of love
Hi Rachel thank you for your reply it really helps when you can share your feelings with someone in a similar position.
I spoke to one of the breast care nurses yesterday who recommended the ‘Reco Bra’ so I’ve just ordered one and hope it gives me a bit more comfort and support.
I tried a hot water bottle under each arm last night and that gave me a lot of relief. I take Nurofen plus that has codeine in at night with two paracetamol and during the day I take two ibuprofen without codeine plus two paracetamol every 4-6 hours and that gives me enough pain relief. The pain is getting less though but the tightness is getting worse. I’m having my dressings removed Friday and not looking forward to that!
I am moving around quite a bit but have to be careful reaching out although my husband Chris has been getting frustrated with me as he thinks I will hurt myself. I’m not a good patient but have relented and just do what I’m comfortable with. I understand that it’s important to get as much rest as you can to help the healing process so I have started watching The Crown, only another 26 episodes to go lol😜
I looked at my chest as soon as I came round and as weird as it looks now I know it’s only the beginning of a long process which will hopefully have a pleasing final result. I have taken some photos so I can look back at my progress. The hospital took some before photos too.
You will be so relieved to get your drains out. It isn’t painful just a little uncomfortable. Mine came out quite soon but they seemed satisfied with levels which were 20 and 39 ml. Day before they’d been 70 and 110 so that was much improved. I do have accumulation of fluid in boobs though and am wondering if they had taken drains out too soon as it wasn’t 24 hours since they had last been emptied.
Best wishes Nicki x
I had a mastectomy with implant recon on my right breast Thursday, I was discharged Friday morning. I have pain in my breast bone when I’m getting up or down. I’m taking 2 x paracetamol at 6am if needed followed by one ibuprofen mid am, repeated like this until bedtime, this is working for the most part for me. I brought post surgery bras from Asda in size large, I’m a small 16, my surgeon said these were a good bra to wear and I have to wear one for 24hours for 4 weeks. I’ve been trying to move around most days, but nothing too strenuous- I was pleased I managed to fully dress myself today.
my husband looked at my new breast yesterday, he said it looked good, I’m still yet to dare to look.
I would say how you’re feeling is totally normal, I too am like you normally positive, but I don’t think I’ve ever cried so much in a short space of time.
I'm hoping for my drains to come out Thursday at the moment I’m at around 45/50mls over 24 hours, your drains came out quick, I’m assuming the level was down enough?
Wishing you a speedy healing process.
sorry if I’ve been of no help, I’m new to all this.
Hi my name is Nicki and I’m new to this forum. I have just had a bilateral mastectomy and immediate reconstruction with expander implants with mesh and would like to share my story and hopefully receive some helpful advice for the journey I have ahead.
It is the second time I have had breast cancer. The first time was in 2003 and I had a lumpectomy followed by chemotherapy, radiotherapy and Tamoxifen drug for five years. My second lump was found last July and I had a lumpectomy as scar tissue was suspected. Sadly it was a new tumour and I was advised to have a mastectomy. I had a genetics test as BC has been on both sides of my family. Thankfully my gene’s had no mutations and were therefore negative. I was put on Leterozole drug as I’m post menapausal, but not sure if I will need to stay on it. I won’t be having any chemo or radiotherapy this time.
I wondered if anyone has had the same op as me and what their recovery was like. It has only been 4 days since my op and I am very sore and bruised and have swelling. My drains came out on day 3. My expanders were filled with 300ml in theatre but look freaky and misshapen. I was pleased initially when I woke up in recovery to see I wasn’t completely flat chested. I will have a top up of saline in 6 weeks and the option to have softer silicone implants later which I think will be preferable.
I’m a positive person and usually good at handling stress but what I didn’t factor in for after my op was how emotional I would feel. I couldn’t even pinpoint any one reason for feeling sorry for myself. Is this a normal occurrence after this type of invasive surgery? Also does the tightness subside? It feels like I’m wearing a really uncomfortable tight bra and want to take the damn thing off lol.
In fact I’m not sure whether i should be wearing a sports bra and if so how soon should I start wearing it?
Any advice would be welcome.
kind regards Nicki