Recovery from Bilateral Mastectomy no recon. With Seromas. When does the pain end???

Broccoli

Hello. I am 53, and got diagnosed with dcis in October in right breast. We elected for a bilateral mastectomy and on pathology the right was 5x3.5x2.5 cm and the left surprise surprise had 2 patches of DCIS which didn’t show on Mammogram. I have been told I don’t need any further treatment - which I accept is ‘fortunate’. But I’m not Pollyanna, and I have lost my breasts, and I am so incredibly sore nearly 3 weeks down the track. Beginning to wonder if I will ever be pain free again?? Neurofen irritates my Crohn’s disease, and panadol doesn’t really do anything. Ive been taking Endone before bed, but still feel like I have bonfires in my chest, and its very tight. I also have MS, so that is not helping either. 

I accept this all happens, and its not easy for anyone. All I really want to know is, does this pain go away eventually? Is there anything that is not a tablet that has eased anyone’s discomfort ? I cannot bear wearing tight clothing. 

I’m having about 95ml taken off each side each week, and it feels like it fills up before I get home after the appointment. 

We have a holiday which has been planned for over a year, in 4 weeks, and I feel like we are just not going to get there. Its a bit of a pressure.

Afraser

I very belatedly found massage helpful, but I wasn’t experiencing pain. The filling up immediately after aspiration is frustrating, I know. I won’t alarm you with duration and fluid amount (mine was an unusually large and persistent seroma, let’s just say 95 ml would have been really exciting!) but massage helped more than anything else. A lymphoedema therapist would be best . Good luck! Oh, and once it went I never had any problems again. 

Julez1958

Hi there
I had a lot of pain after my mastectomy and it took about 6 weeks to go away .
I am the sort of person who never even gets a headache and only have Panadol in the house for guests.
My pain was so bad I had to take Endone for a number of weeks and then taper down to panadeine forte.
My breast care nurse and surgeon just said “ everyone is different and it should go away in time”.
Which thankfully it did.
Hopefully you will come to the end of it like I did.
Some people find acupuncture helps.

Broccoli

Thank you both for your kind and encouraging comments. 

AllyJay

I had a bilateral in 2017 and had a seroma form three times on the right side. The first time it was aspirated, there was around 250 ml and the second time, a week later 160 ml. When it filled the third time, the decision was made to just leave it and see if it stabilised and cleared on its own, as my surgeon was concerned about an infection which is a risk, even with all the appropriate measures. I had my Frankentitty almost under my arm, but it never got too large again, and eventually got reabsorbed by my body. I actually found that wearing a tight t shirt two sizes too small to be better than loose tops. The movement of fabric over my chest and scar felt like when you've become very sunburned, then have beach sand stuck to the skin and a rough towel being used to brush it off. The very slight pressure all the way around also helped to stop the fluid in my seroma from sloshing about. I hope things settle for you soon.

Broccoli

Thank you, exact description of that terrible skin touch pain. I will try your suggestion on the tighter clothing. That type of pain is called Allodynia and I think its because of cut nerves. It really helps to have other experiences, I don’t feel so alone either. So thanks very much.

Abbydog

Dear Broccoli,
I'm sorry for your recent experiences.
With my SMX with axillary clearance, my seroma was drained 6 times.
Started at 150mls and slowly reducing over that time. 
Like everything we are individual. Big variations.
I didn't find it particularly painful, except getting comfortable at bedtime.
I did have very strange sensations and numbness to my inside,upper arm and my side.
2 1/2 years later, sensations are still not normal. I've had to get used to it.
I had oxycodone, which I took at bedtime, and weaned off.
I did see a specialist Physiotherapist, who did Laser. She said it would help with healing, the seroma and cording.
Where is your holiday to?  Australia or Overseas? Is it for a long time?
Ask your Surgeon if an experienced Doctor can do it where you are going? Maybe refer you or give you a letter.
Maybe by then you can have it done less frequently.
My Surgeon was unavailable once and arranged for it to be done in an Emergency Dept, at the hospital that I'd had the surgery at.
I've since had reconstruction, and had a seroma again. I was told to be prepared for that, by the Surgeon.
Stay positive, it will settle. But I would seek medical advice regarding the holiday.

Broccoli

Update: Hello. 5 weeks past surgery, I'm more comfortable thanks. I have been having laser for cording and massage for adhesions. I have bought a strip of 'scar fx' silicone for each side, and will wear for 12 weeks to soften the scar. It is 6 days til our trip, and though I am still quite anxious I have been engaging more in the necessary preparations. Seromas are small and I think I will manage them while we are away, hopefully they will just disappear. I really appreciate the support received thanks.