Bilateral Mastectomy and Pain with Reconstruction

Cheri D

Hi,

I just joined this site.  On May 13th I had a bilateral mastectomy and had expanders placed in me. So, it has been 3 weeks now. All of my cancer got removed and there was no cancer in the limph nodes!  I am having  strong burning pain on my left side.  My right side is fine.  I am wondering if I am going to continue having this pain as the expanders get filled?  Will there still be pain after the implants are in?  Wondering if I should opt to get the expanders removed and do the tummy  tuck tissue transfer?  Is the tumy tuck method just as painful?  The pain is really hard on me.  It is a 10 on a scale of 1 to 10.  Narcotic pain pills help a lot but I don't feel safe driving while I take them and I have an 8 year old that needs to get to and from school.  I would love to hear about your experience and what you opted to do after your mastectomy.

Thank you so much for your replies.

chicaroo44

bilateral mastectomy and pain

im in your boat as well.  im two weeks post op today  (well actually friday was post op 2 weeks, i got out of the hospital 2  weeks ago today)  i have the same burning pain as well.  it only happens when ive been in the lying down position or sitting position for any amount of time and i go to get up.  my doctor told me it was more than likely spasms (i was associating as burning feeling.  ive learned to deal with it.  they removed my tubes thursday and now i have fluid that has built up on the left side.  my doctor told me not to worry about it,  i have another appointment with him on wednesday he said he would remove it at that appointment.  he says it happens sometimes and i shouldnt be worried about it.  i stopped taking my meds, i didnt like that feeling i got from them,  feeling foggy all day wasnt worth the relief i recvd from them.  ive instead opted to take two extra strength tylenols at night before i go to sleep.  ive heard the tram flaps are extremely painful.  your not only recovering from the mastectomy but also from a medically induced hernia as well.  i didnt think i could handle all of that at once.

 

 

chicaroo44

bilateral mastectomy and pain

im in your boat as well.  im two weeks post op today  (well actually friday was post op 2 weeks, i got out of the hospital 2  weeks ago today)  i have the same burning pain as well.  it only happens when ive been in the lying down position or sitting position for any amount of time and i go to get up.  my doctor told me it was more than likely spasms (i was associating as burning feeling.  ive learned to deal with it.  they removed my tubes thursday and now i have fluid that has built up on the left side.  my doctor told me not to worry about it,  i have another appointment with him on wednesday he said he would remove it at that appointment.  he says it happens sometimes and i shouldnt be worried about it.  i stopped taking my meds, i didnt like that feeling i got from them,  feeling foggy all day wasnt worth the relief i recvd from them.  ive instead opted to take two extra strength tylenols at night before i go to sleep.  ive heard the tram flaps are extremely painful.  your not only recovering from the mastectomy but also from a medically induced hernia as well.  i didnt think i could handle all of that at once.

 

 

cinnamonsmile

The burning sensations may be

The burning sensations may be from nerve damage during the BMX and node removal. I have a severe form of it even 2.5 years later. I feel burning, when the air condition in teh car blows on my arm it feels like a blow torch, I have constant pain and skin hypersensitivity. I learned that the nerves were damaged. Instead of functioning normall, the nerves interpret pain even though there is no other physical reason for the pain. So the nerves send pain signals to the spinal cord and up to the brain.

 You need to call your breast surgeon (most plastic surgeons that I have read about on here don't take pain seriously)!!!!

I know there can be pain associated with reconstruction, but I don't know about that since I didn't have reconstruction.numbness, prickling pain, the doctor last week pushed on my chest and she barely pushed on it, but to me it felt like she took her knuckle and rubbed it in as hard as she could. Sometimes I get the electrical zaps that most say are nerves healing. I also have lymphedema. So when my LE acts up, it is usually a severe stinging pain on top of it all.

I feel pain on the back of both upper arms, armpits, the front and sides of chest, and around my back almost to my spine from the rib cage on up to the clavicles.

A few months after my bmx, I got a referral to a pain clinic. They tried different medications and doses until we got a regimen that worked the best. I also have different procedures done. The one that works the best is a Lidocaine Infusion where they give me a bag of Lidocaine right to the vein. There is great risk with this and I am monitored closely.

There are many medications to take for nerve damage pain, but most have some side effects (like everything else with cancer treatments, right?). Legally, I am not supposed to drive in my state. The medications I am on are considered a controlled substance.

I take 2100 mg of gabapentin through out the day, 25 mg Amitriptyline at bed time (some antidepressants have shown to help some people with nerve damge pain and helps promote sleep at night-my pain wakes me up a lot at night, 400 mg Skalaxin at bedtime, I take 50 mg of Tramadol for break through pain (pain that is more severe and acute rather than the usual chronic crap), but if the Tramadol doesn't work, I take a vicodin (I can't remember the dosage right now).

You should not have to live with pain like that. You need to call your breast surgeon or oncologist tomorrow and make an appt. 

It helps if you have written down EXACTLY what your pain feels like, WHERE you feel it, HOW OFTEN you feel it, what makes it worse, what makes it better and that the current medications you are on are NOT helping you.

I agree that that is not good to drive while on narcotics and unfortuneately if you have nerve damage, the medications can make you loopy.

I realize how hard it is for you with taking care of your child while going thru this. Do you have anyone that can help you out?

Hopefully someone that had reconstruction can help with that pain.

I totally empathize with you and understand...

Cheri D

cinnamonsmile said:

The burning sensations may be

The burning sensations may be from nerve damage during the BMX and node removal. I have a severe form of it even 2.5 years later. I feel burning, when the air condition in teh car blows on my arm it feels like a blow torch, I have constant pain and skin hypersensitivity. I learned that the nerves were damaged. Instead of functioning normall, the nerves interpret pain even though there is no other physical reason for the pain. So the nerves send pain signals to the spinal cord and up to the brain.

 You need to call your breast surgeon (most plastic surgeons that I have read about on here don't take pain seriously)!!!!

I know there can be pain associated with reconstruction, but I don't know about that since I didn't have reconstruction.numbness, prickling pain, the doctor last week pushed on my chest and she barely pushed on it, but to me it felt like she took her knuckle and rubbed it in as hard as she could. Sometimes I get the electrical zaps that most say are nerves healing. I also have lymphedema. So when my LE acts up, it is usually a severe stinging pain on top of it all.

I feel pain on the back of both upper arms, armpits, the front and sides of chest, and around my back almost to my spine from the rib cage on up to the clavicles.

A few months after my bmx, I got a referral to a pain clinic. They tried different medications and doses until we got a regimen that worked the best. I also have different procedures done. The one that works the best is a Lidocaine Infusion where they give me a bag of Lidocaine right to the vein. There is great risk with this and I am monitored closely.

There are many medications to take for nerve damage pain, but most have some side effects (like everything else with cancer treatments, right?). Legally, I am not supposed to drive in my state. The medications I am on are considered a controlled substance.

I take 2100 mg of gabapentin through out the day, 25 mg Amitriptyline at bed time (some antidepressants have shown to help some people with nerve damge pain and helps promote sleep at night-my pain wakes me up a lot at night, 400 mg Skalaxin at bedtime, I take 50 mg of Tramadol for break through pain (pain that is more severe and acute rather than the usual chronic crap), but if the Tramadol doesn't work, I take a vicodin (I can't remember the dosage right now).

You should not have to live with pain like that. You need to call your breast surgeon or oncologist tomorrow and make an appt. 

It helps if you have written down EXACTLY what your pain feels like, WHERE you feel it, HOW OFTEN you feel it, what makes it worse, what makes it better and that the current medications you are on are NOT helping you.

I agree that that is not good to drive while on narcotics and unfortuneately if you have nerve damage, the medications can make you loopy.

I realize how hard it is for you with taking care of your child while going thru this. Do you have anyone that can help you out?

Hopefully someone that had reconstruction can help with that pain.

I totally empathize with you and understand...

I am  so sorry you are  going

I am  so sorry you are  going through all of this.  Your story brings tears to my eyes.  I  will make that appointment with the  surgeon, I know what  you mean about the plastic surgeons, they are different. My husband noticed that too.  I love my surgeon but she is having her first baby later this month so I am not sure if she is already on maternity leave. But I will call and talk with her nurse about this.

 My husband talked with a dr. he knows and she also said it could be nerve damage.  I have been writing down when and how much of the meds I have taken since I came home from the hospital.  The pain was so bad on Saturday with every breath I took.  I got my drains out on Friday and thought the pain would start to get better!  Is there a way to know for sure if it is nerve damage?

My  pain is under the left breast area.  And deep breathes often make it worse which makes it challenging to try to relax.  I really had no idea going into this all of the possibilities that could happen with pain.  I just wanted to get the cancer out of me asap.  The pain pills I have are Hydromorphone.  They help but I have to take them every 3 hours.  Fortunately, my husband took a  few days off to help with me and our son and I have had moms and friends help drive my son to and from school.

Thank you so much for sharing your story and about the  nerve damage possibility.  Do your doc's think your nerve  damage can heal?  I hope you will get better.  I'll be sending positive healing thoughts your way!

 

Cheri D

chicaroo44 said:

bilateral mastectomy and pain

im in your boat as well.  im two weeks post op today  (well actually friday was post op 2 weeks, i got out of the hospital 2  weeks ago today)  i have the same burning pain as well.  it only happens when ive been in the lying down position or sitting position for any amount of time and i go to get up.  my doctor told me it was more than likely spasms (i was associating as burning feeling.  ive learned to deal with it.  they removed my tubes thursday and now i have fluid that has built up on the left side.  my doctor told me not to worry about it,  i have another appointment with him on wednesday he said he would remove it at that appointment.  he says it happens sometimes and i shouldnt be worried about it.  i stopped taking my meds, i didnt like that feeling i got from them,  feeling foggy all day wasnt worth the relief i recvd from them.  ive instead opted to take two extra strength tylenols at night before i go to sleep.  ive heard the tram flaps are extremely painful.  your not only recovering from the mastectomy but also from a medically induced hernia as well.  i didnt think i could handle all of that at once.

 

 

chicaroo44...

I am glad you are able to handle the pain wiothout the pain pills.  That was where I was  at too until the last few days and now only the  pain  meds help.  I just read that with the reconstruction where they take fat from the abdomine that they no longer cut any of the muscle.  I will have some serious thinking to do.  I am tempted to get these expanders  out.  Wait awhile and later get a reconstruction by a DIEP Flap if I qualify.  I am so glad I found this website!  I really appreciate your response.  I have been learning a lot today!

I sure hope that my burning pain is a muscle spasm rather than nerve damage!  I am definately going back to the surgeon with lots more questions.

Doe1504

I am 3 weeks post  op from a

I am 3 weeks post  op from a bilateral mastectomy. I have burning pains occasionally but just figured it is where they have me stretching the muscles a little. I wouldn't really call it pain, just twinges. If the pain continues, see your dr and explain how bad it is. I have been off pain meds since I left the hospital, no pain, thank God, and have started driving a little. I am waiting to start chemo treatments. Are you having to do chemo treatments also?