After A Mastectomy

My mom had a radical mastectomy about 7 weeks ago.  Recovery for her has been awful.  The wound healed fine, however the worry that something is coming back is awful.  She was diagnosed with Stage III breast cancer and a very fast growing tumor and there were 10 lymph nodes involved.  A few weeks after her surgery she felt another lump above her incision and when she went to the surgeon he said it felt like a little bit of fluid and some breast tissue and was just probably a cyst.  Now she is having pain, somewhat feeling like a pulled muscle and it appears to her that it is more swollen.  She is terrified it is her tumor growing back.  I have searched for anything that says how the body heals after a mastectomy and cannot find any information past when the staples are taken out.  Can anyone who has been through this help me?  I would love any information about how the body changes and what the wound and around the wound will look like weeks after surgery.  Thank you so much in advance.

Hi,

I had a double mastectomy 4 yrs ago. It's hard to compare situations without actually seeing and talking to your mom, but I can tell you that only recently have I gotten to the point where I have no pain at all that concerns me. I did not have any issues with the incisions themselves although I experienced really bad itching for about 6 months after the surgery, and could never scratch them. It felt like it was underneath the skin.  I had some phantom pains where my original lumpectomy was done and still occasionally do. I also got bad keloid scars on one breast but not the other. Another thing that happened after the surgeries (I had 6 reconstructive / mastectomy surgeries) was that I lhad serious memory problems. I would go to the grocery store, come home and forget to unload them out of the car. I mailed people wedding gifts I didn't remember buying. I couldn't do simple math for 6 months. and I could not tolerate alcohol at all - if I had 2 drinks I would throw up violently. Also I couldn't get out of bed, I was just exhausted. This went on for almost a year.. I did some research and saw an endocrinologist and was told that my endocrine system had crashed - I am now taking a number of different hormones believe it or not including thyroid.

Especially for the first year after the surgery, every time I did anything that stressed the muscles, I had strange pains that made me think my cancer had returned. That could be pushing something heavy, lifting myself out of a pool, or attempting to take an exercise class. Most of the pains were in the chest muscles deep in the chest beneath my implants. I tried to get back in shape and start exercising again, but every time I did anything that involved my arms i would get strange pains and end up getting sent to the hospital for a CT or MRI just to be safe. Eventually I gave up using my arms in exercise for several years because the stress of wondering what the pain was caused by wasn't worth the benefits. The scars healed well; I was and still am puffy around the chest and under the arms from the surgery and have been told that will never go away. For example my elastic jog bras don't fit anymore - they dig into my skin - and it is tough finding a regular bra that doesn't do the same thing and still gives me some sort of shape. I'm happy to report that I started just now taking a weight class at the gym, and had a few flickers of pain the next day the first time around but no recurrences which I am very excited about!

Every time I have even the slightest health problem I worry it's cancer related and end up in a doctor's office to be reassured. Even getting a mole removed is a scare now. In fact I found this site because I have had lymph node pain in my groin and was wondering what this could be symptomatic of. This is part of the process and unfortunately necessary to stay healthy!! I have just tried to get used to it. I wish your mom the best. Tell her not to push it too hard and that if she notices she seems exhausted months after surgery to get her thyroid checked!

Hi, I don't know how much I can help but I had a double mastectomy 6 weeks ago for agressive stage 3 + invasive ductal carcinoma.  My mastectomy "wounds" have healed without any physical pain. I am 58 and had no problem with my decision nor did my husband who only wants my life.  I am lucky in that I think!  Your mom needs to seriously talk with her oncologist - and if he or she doesn't give her the answers she needs, then she needs to get a different oncologist.  I consulted 3 oncolcogists before I found the one I felt comfortable with.  Believe me, they are used to it, regardless of how the receptioness may make you feel.  YOU are paying for this and YOU are in CHARGE. Ask all the questions you have and don't stop until you have all the answers you want.  I don't know where you live, but where I am ( in Iowa) I have acess to a Cancer Clinic Counselor who has helped me so much to navigate the cancer system.  I'm sure you have a similar system where you are - if you can't find it, let me know - I will find it for you.  There is help for us - it's just not always easy to find!  Love  to you   Robin

You could be experiencing pain from scar tissue, from poorly draining lymph nodes, from infection and/or inflammation, as well as the possibility of recurring tumor.  Get your dr to give you a thorough exam, and keep pushing for satisfactory answers.  If you don't feel you are getting a reasonable explaination and proper treatment, get a referral for a 2nd opinion.  As the consumer and the patient, you DO have the right to consult a different physician - and any dr worth his or her salt should not hesitate to provide you with a referral so that your insurance will cover it.  Also, you can ask your dr to refer you to a physical therapist well-experienced in treatment of post-mastectomy recovery.  This could include massage, physical manipulation, stretching, hydrotherapy, exercise under supervision and a home treatment plan.

After a mastectomy, lymph nodes around the surgical site can get congested with crystallized drainage/secretions.  Many women report  stringy bumpy areas at about 10 months post-op - this is crystallization due to inadequate drainage.  These crystals can be broken up through gentle massage of the affected area. 

Pain from post-surgical scarring can also be eased by gentle but persistent massage of the affected area.  Doesn't have to be anything fancy - doesn't even have to be prescribed by a dr or therapist.  To the extent that you can stand, gently but firmly massage the area at least several times a day - gentle pressure may at first be somewhat uncomfortable, but within a short period of time SHOULD help the area to feel better.  If gentle massage causes onset of moderate to severe pain, stop and get another exam.

Unless you have another physical condition which affects your balance or mobility, You might also consider using a rebounder (mini-trampoline.)  They can be purchased fairly inexpensively, and gently bouncing for just 3 minutes twice a day can greatly improve lymph drainage, decrease lymphedema, help to break up scar tissue, improve muscle tone and circulation, plus it's a lot of fun. 

 

On 6/1/2008 robinsnest wrote:

Hi, I don't know how much I can help but I had a double mastectomy 6 weeks ago for agressive stage 3 + invasive ductal carcinoma.  My mastectomy "wounds" have healed without any physical pain. I am 58 and had no problem with my decision nor did my husband who only wants my life.  I am lucky in that I think!  Your mom needs to seriously talk with her oncologist - and if he or she doesn't give her the answers she needs, then she needs to get a different oncologist.  I consulted 3 oncolcogists before I found the one I felt comfortable with.  Believe me, they are used to it, regardless of how the receptioness may make you feel.  YOU are paying for this and YOU are in CHARGE. Ask all the questions you have and don't stop until you have all the answers you want.  I don't know where you live, but where I am ( in Iowa) I have acess to a Cancer Clinic Counselor who has helped me so much to navigate the cancer system.  I'm sure you have a similar system where you are - if you can't find it, let me know - I will find it for you.  There is help for us - it's just not always easy to find!  Love  to you   Robin

Hi Robin.  Thank you so much for your reply.  My mom recently has found what is possibly another tumor above her mastectomy scar.  They did the biopsy yesterday and we will find out tomorrow if it is cancerous or not.  She only had her mastectomy 10 weeks ago and they told us the entire tumor was removed.  Anyway, you said something about a Cancer Clinic Counselor.  My mom has not been comfortable with her oncologist and if we need to start this process over she would like to find a new one.  I have tried to find a counselor such as what you were speaking about but with no luck.  Can you help me?  We are located in Southern Indiana.

 Take care, Kristen

I have recently been dx with invasive ductal carcinoma and have had a lumpectomy, so nothing near what your mother is going through however I am in carrollton ky and I don't know what part of southern indiana your in but louisville ky has 2 that i know of cancer centers that are 2 of the best. Brown cancer center and the womens cancer center at baptist hospital east. depending on your location this may be of some help. Sending your mother well wishes and many prayers.

Kristine