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Post Mastectomy Issues, Please help!
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Post Mastectomy Issues, Please help!

On January 24 I had a right side radical mastectomy and the dissection of the Sentinel and two nearby lymph nodes. Two months have passed and I still have a swollen armpit like a medium to a small sized balloon which is not getting any smaller and an uncomfortable numb feeling on the same side but on my back. Today I touched the area, in other words, the back side of my arm and between my spine that side feels very cold and totally numb compared to the left side. I have bought post mastectomy bras and breast forms, but I can not use them because that thing in my armpit shows a lot more, like a small breast which I don't have, and it is very uncomfortable as if it gets bigger due to the bra compression or so I suppose.
  
About a month ago I asked my breast surgeon if I could call the Specialized Rehab Nurse to get massages and help that armpit and my back get better, he said it was too soon and he would tell me when. I asked him if he could needle drain whatever liquid may be in there, he said no because it must reabsorb itself.  A few days ago and two months after the mastectomy I had a checkup and did not ask the surgeon any more, I am very angry at him for several reasons which are not the case now.

If possible can you tell me what are those two things and why do I have them?

I am suspecting a surgery mistake and damage to the nerves.  I don't have pain, no swollen arm or hand  thus I suppose it is not a lymphedema or so I hope, I did not use the right arm as per the doctors instructions till almost two months later.

As I am switching to another Breast Surgeon in a couple of days I need accurate information on why I have those two issues, what they are and why do I have them. I need to speak to the new Breast Specialist and explain myself with certain words and not take down my previous surgeon which is not my intention.

Can you help me with the requested information?      

Thank you
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242527_tn?1292452740
Dear Marylou:  Without evaluation, it is impossible for us to speculate on what this swelling and numbness could mean.  This could be a seroma and whether to aspirate or let it absorb is really a surgical decision based upon a physical examination.  In terms of the numbness, it is not unusual to experience sensation changes after breast surgery.  There are many nerves in the area and they can be irritated.  Nerves can take a long time to heal.   While we would love to answer your post specifically, it simply cannot be done without evaluation.  Hopefully your new breast surgeon will be able to provide answers.  When you have the discussion with your new surgeon, try to focus on the problems rather than on possible causes.  
15 Comments
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1162347_tn?1293506770
I beg you to please answer my above question. What is inside the thing that looks like a balloon under my arm pit is said to be filled with Seroma. The numb area I understand is called one of these: Shoulder Blade, Scapular area or subscapular area.

I had to clarify as my original post sounds horrible.

Thank you  
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1162347_tn?1293506770
I did not ask you to to evaluate me, I know you can not and don't do it over the Internet and it is reasonable. I have asked what are those two things I have asked about, only what they are called and why they appear on me or anyone else. If possible what is that situation called in other words if that is a lymphedema or not. That is all I needed to know I did not ask or think it possible to obtain an evaluation. But thank you for an answer that says nothing and that is useless for anyone, I already have an accurate answer from the John Hopkins Cancer Unit who have been very helpful.

.  
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Avatar_n_tn
I have had the same operation on my left side they took 14 lymph nodes from my under arm.  My arm was very fat for months.  The swelling comes and goes with heat, or if I am not feeling well.  Lymph nodes act as a filter.  If the swelling does not go down you can go to a physio therapist for a special sleeve that helps keep the swelling down. you may be building up toxins in the body.  My left shoulder is numb of and on, when it is hot out it really goes numb. It could be lymphedema, but it can take several months for every thing to calm down.  It as been a year for me and I will never be the same they cut nerves and muscle. I just live with the numbness and swelling.
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Avatar_f_tn
hi
i to had a lymh node disectional, i lymh note positive had llumpdectomy in feb, march the disect
ionall. was great til my drainage tube fell out in 4 days. doc said will absorb . 1 week later had to go back to surgon had pain not even pain pills helped went in had a large seroma and it was drained ,if i had no pain i would have to wait on natural absobing. thry said i may have to come back again. only been 4 days and its swelling again but not as much pain. i sleep with arm raised with pillows also head helps. i rub it ,that helps. they do not like to aspirate as chance of infection or reinsert tube.
  no cold or hot compresses i was told.
ask you a question ,have you started any chemo ,radiation or hormone treatments yet. i.m anxious to start, ichose no chemo im 71 and hormone er receptive 100per cent. one doc at a major cancer center said i did not need it, another a onocologist local said 13 per cent more if i do. going with no . let me know
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739091_tn?1300669627
I am so sorry you're having complications from your mastectomy. I don't understand why he told you not to use your arm. Most are told to put their hand out and touch a wall and "walk" their fingers up the wall and down again as a way to gently exercise after mastectomy. It also helps to get range of motion back. As you know, lymph nodes serve the purpose of moving fluid within our bodies and the removal of lymph nodes can be problematic and swelling can occur. So can lymphedema which doesn't get the attention it should from Doctors.

My first mastectomy removed a 10 cm mass that went all the way under my arm. I complained to my doctors at each examination that there was pain & swelling under my arm and they kept saying it was scar tissue. At the time of my second mastectomy and DIEP reconstruction I had world class surgeons who took the time to find out why this was occuring. I had a pocket of fluid that was trapped. Sadly it took 16 months from my first surgery to get someone to listen and it was removed and I've not had any issues since.

Ask your new Doctor about this and let him/her know that you want an ultra sound of the area and that you are interested in physical therapy for this condition. Ask for recommendations from them for a physical therapist that is specifically trained to help breast cancer/mastectomy patients. They can give you relief and also teach you movements that should help you keep this under control.

Numbness from surgery is unfortunately normal. That said, I don't understand why you would have numbness on your back. I hope it's not permanent.

I'm proud of you for being pro-active with your health. There are excellent Doctors out there and I'm sure you'll find one with your best interests at heart.

Best wishes moving forward.
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492898_tn?1222247198
I totally support SueYoung55 in every word she has said.  Marylou_II, she has given you excellent advice. Take care, Katrin
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1162347_tn?1293506770
Hi and thanks so much for your answer. Heat also affects me I am in my third month since the mastectomy and those swellings.

I had a great rehab therapist specialized in Lymphedema but my former surgeon did not want her to help, so now she is taken for several months and I am left out. I went to a special place where they sell those compression sleeves w/without glove, he also said no don't use it yet. When I switched to the Breast Specialist he said get it right now and get the rehab therapist too, the sleeves were all gone and none left for me, those are imported and none made in this country, so I was left empty handed again.

I told the specialist about both issues and he did something and got some one else for the rehab and I ordered a compression sleeve from the US I will get it this coming Tuesday.  

If you wish to know why I have the swelling and numbness please read down to another answer, this has been a criminal issue by my former surgeon, plain and simple carelessness.  

Thanks again and regards.

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1162347_tn?1293506770
hi ladypar72:

Yes I know my drainage tube also fell out, the seroma and things that looked like long peaces of skin got stuck in the tubes, I was in horrible pain and demanded the surgeon to drain it out and put the drainage in place again, I was so mad!! The seroma I had under my arm got as large a an adult human head, it was terrible.
Yes it is correct to have natural absorbing, with clean tubes, a well placed drainage, permanent checking but with help from the therapist and the compression sleeve not just out of plain luck because that does not happen. .
I am so sorry you had the same problem, I don't understand what is going on with these surgeons, they are so careless that it is impressing. I also slept with my right arm over a pillow but all the same the swelling got bigger. Right no cold or hot compresses, those are not good.
I had already been through chemo, radio and brachytherapies for my previous cancer only six months before this breast cancer issue. After the mastectomy and three lymph node dissection and being my age 69 I demanded a life expectancy chart that only doctors can get from a place in the USA and it said:  

First bar: Without any additional therapy after mastectomy life expectancy 12 to 15 years or more. 1% chance of dying from cancer and 2% chance of dying from whatever other issue other than cancer.
Second bar: With chemotherapy after mastectomy - I would gain that 1% mentioned above the 2% dying from other things remained the same.
Third bar: With chemo and radiotherapy, the same my only gain was 1% of the possible death by cancer. The rest remained unchanged.
Fourth bar: With any AI specifically with Femara, I gained the same 1% and the rest remained the same.

So I was supposed to go through all those horrible side effects with the AIs or Femara for a 1% gain, NO THANKS.

I am 69 say a more or less poor prognosis according to the above, if I pass from some kind of cancer I would be 69 + 12 = 81 years old. Why live longer full of aches and pains? What for? I chose life quality and not quantity so NO THANKS no AIs. I am going for my follow ups but don't take any meds and have told the doctors I will not take anything, I have switched to Alternative Medicine, full of healthy food, vitamins, special wild fish not from farms, full vegetables specially greens from farms not from super markets to avoid the GMOS [genetically modified food], 1 hour walk in the morning and another in the afternoon, Sodium Bicarbonate mixed in boiled cold water to drink as much as I want each day, Ozone Therapy to get oxygen to my blood and one Iodine dose once a week. I am feeling great and happy with my decision.

I am ER positive 92% and PR and Her2Neu both negative, I believe you don't need the AI or Hormone Therapy, what for? read what I said about the issue. If you told me you will live to be 120 pain free from AIs side effects then great do it but it is not the case, Google [just to name one] "Arimidex side effects" at chemocare.com once you get the page read it well, and then you will know why I said NO to those. Your oncologist is out of his mind, sorry but it is true he is dead wrong 13% more being 71? No, no he is very wrong.

I am not saying for you to do the same as I have chosen about alternative medicine and NO AIs, this is a personal choice and I took mine. Think nicely and make your informed choice once you have Google as mentioned.

Good luck, may God give you the knowledge to make the right decision  and God bless you.

Regards.  
  
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1162347_tn?1293506770
Hello and thanks for your reply:

Yes I am so sorry too it has been a huge problem and my former surgeon was an idiot. I did not understand either why he said that, when it is well known it is good to have mild exercise and right you are we all know that walking the fingers is a great exercise but he said no, maybe he has a new lymphedema theory or whatever. What does range of motion mean? I have never heard about it.

I will tell you my idea on why doctors don't pay attention to lymphedema, it is only because it means they will not get a good income for treating it and also think that only nurses do that job. If we the patients know what a lymphedema means and why it happens they should also know and do their best to operate correctly and not in a mad rush to have as many operations per day as they can, that is why they make such bad mistakes cutting nerves that are not to be cut.

Oh goodness your case was terrible, a 10 cm mass? Wow that was big. You did right in complaining I also complain a lot but only when I am right.  You say "they kept saying it was scar tissue" that is the easiest way out of negligence. You were so lucky you had excellent surgeons for your second  mastectomy and DIEP and who took the trouble of finding out what was going on because if they did not it could have caused complications in the second surgery, so yes they were very good and thoughtful. With that pocket of trapped fluid you could have had a hell of an infection and severe complications. I am so glad all went well and that you are fine now. I will keep this in mind and tell my new breast surgeon to check me for such a pocket of trapped fluid too.

At the time of my second mastectomy and DIEP reconstruction I had world class  My new specialist has order I go to the hospital for special rehab for my numb back, I have had four sessions and they have truly helped, it is not as numb or as cold as it was, but he also said that it is practically irreversible but a small amount of relieve may be reached and that I will reach it.

I hope I get better about the numbness, it is very uncomfortable and it is weird to not feel part of my back. Yes I am pro-active about my health because if we don't do it who will? Leaving it all to the doctors is simply silly no one will ever do better for each of us than ourselves. After all it is our body and our health and we are the best guardians for them.        

Another issue is about my scar, I have this terrible anger about it. It is the most horrible scar I have ever seen and I have searched the Internet for images on mastectomy scars, the only worse one is in Australia the poor lady has something called "dog ears", these are along the scar which she has right over where her breasts were and way up near her neck and she had a double radical mastectomy but it is listed as medical malpractice. Those are like growths of skin and flesh all along the huge scar it is truly horrible. My scar is not white like my skin color it is black, God knows why maybe he dropped his cigarette or something of the sort, there are several scars, holes, things that look like a belt under my skin, some of those dog ears no I better not go on or I will start crying again.

Yesterday I had my follow up with the oncologist for my first cancer, he was shocked and stunned with the scar, he said "this is terrible it is a criminal act" and all this while I cried and cried my eyes out. He got so angry and was so sweet that he said he will call my previous surgeon and ask him what happened and that he is to call me and offer a free plastic surgery in Brazil to give my chest the right look though I don't want a reconstruction and that he is to pay for it or my Oncologist will back me to sue the surgeon. So the issue with this horrible surgeon is not over, I keep getting back at him because each time I see a doctor something else is found.  

With my new breast specialist I did as you said and I am getting better with the Seroma issue and my back numbness, he was also shocked with my scar and he was the one who told me to tell my oncologist and show him the scar because he was the leading oncologist in my team and so I did.

I have found out my former surgeon is in horrible legal problems because a boy died while he was operating on him, the parents have taken the surgeon to court and he is up to his neck. The charges are "criminal negligence and malpractice", thanks heaven it was not during my surgery though I feel for that boy and his poor parents. Now more than ever I won't give up, I also have rights.

Well my dear I am worn out with this issue, I don't want to loose my fighting spirit and I won't give up.

Thank you again and best regards.

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1162347_tn?1293506770
Hello my dear, how have you been?

I hope you are doing good and that you are not so tied any more. Please take care and remember it is in your hands up to a certain point and then comes the one above, pray and pray. You are always in my prayers.

I have this nice link for you, read it when you have time. It is very interesting and the theory is excellent about why people get cancer. The link is:

http://www.healingcancernaturally.com/hamer.html

This is the theory and experience in over 6,000 cases of a Medical Doctor in Traditional Medicine and his theory and practice is truly great.

Take care and hope we will all get over these things soon.

God bless and take care of you.
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1162347_tn?1293506770
Sweetheart,

This is link is better than the previous one, I love this one.

http://www.healingcancernaturally.com/hamer6.html#Interview_with_Dr._Ryke_Geerd_Hamer,%20_MD

God bless you.
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492898_tn?1222247198
just briefly for tonight, and I am utterly exhausted with a headache after spending more than an hour on the article(interview) you recommended. Still have not finished. it's totally fascinating, and thank you so much for referring it to the right person this surely applies to. i wish I was slightly more intelligent and my brain slightly better functioning so I can understand all of it. But tomorrow is another day!

Marylou_II, I really thought I had read all, or at least almost all of your posts here. but this, what you are telling here about the surgeon and your scar and the negligence and other horrible things, I do not recall you ever mentioning anything about the specifics before, or am I missing more memory than I thought?

What you are describing is absolutely horrible, and I am so very sorry this has happened to you. I really cannot think of anything worse and that is a reason I try to warn people about reconstructive surgery, even if I never had any, and am so glad I didn't because of the horror stories I listen to. I know yours is only the original mastectomy scar but that is no less horrible. OK, my life is certainly not problem free, but my mastectomy is beautiful and I love that side of my chest even more than the other side with the breast. When I was reading the charts from my operation, the surgeon writes how most of my lymph nodes were not only positive, and this had never shown up on MRI or other scan, but how they were matted and stuck together and to nerves and gotten into the fat tissue and some been killed by chemo but then grown back, ett, etc. He then writes that and how he separated those sticky lymph nodes from the nerves and then protected each nerve...I forgot what it says specifically now.it was a five hour operation. not only have I never had any problems with anything except for the totally normal and expected little passing stuff, but I have absolutely no numbness at all anywhere, and only had some for a little while. no swelling, or lymph-edema and the surgeon cleared the entire axilla as well as lymph nodes in other areas near by. (on the other hand, those radiologist docs who inserted, and later took out, the porta-cath (the catheter I got chemo through and which was placed on the other side), and the scar is three times bigger and worse and noticeable than the mastectomy one.

Anyway, I am so upset for you-!!

Have to go to sleep, take care, Katrin
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1162347_tn?1293506770
Good morning dear Katrina:

I hope you slept well and had a truly good night, don't over do it today remember you must save your energies. I had no clue you also had problems and with such a simple thing that should not have left a scar.

Do you know what Avemar is? It is a great product, an energy booster that is really saving many lives now a days, if you wish more info go to this link and read the post by Shemay:
http://www.cancercompass.com/message-board/message/all,10780,1.htm

My scar now makes me a circus freak, each time I see it the more issues I notice and I can't look back at the area with the numbness, if I did I bet I would find something else to cry about. I understand this to be a degrading of a human being, greed and more greed is the whole issue with this surgeon and I had to pay the price for his greed. That is how life goes, but I will follow my plan and stay on it to the end even if he goes to jail for the boy he killed + what he did to me. I got in touch with the boys parents, they are coming over today and I shall see how I can support them in court with my case.

Regarding The Interview, by Dr. Hamer, I love that post too, I love what he says about the sheep. It is wonderful and it unites life, illness and emotional shock/pain giving a meaning to why things happen. I can so relate to it. My Gynecologist-Oncologist told me both of my cancers had developed between 10 and 15 years ago. I kept that info in the back of my brain but it was there disturbing me. Suddenly I went back 15, 14, 13, 12, 11, 10 years. What had happened in my life during each of those years that could have caused an emotional shock? our minds hide the info from us so we won't remember dates or facts but only the numbness of the pain. I reached the following conclusion:

My data: I am right handed
I have right side breast cancer.
I have cervical cancer on the right side of the cervix.

16 years ago: My first born son passed all of a sudden from a heart condition he had since birth but was not a health risk. The pain has so horrendous I was tear-less, I could not cry his death. I have kept that terrible and numbing pain as a stone in my heart and soul ever since.  

13 years ago: My mom was a diabetic since menopause but not ill, she was fine and well taken care off. We were chit chatting, laughing and suddenly her head dropped to one side and a tear on her cheek. I lost it, I even called on the those loved ones that had passed to help me bring her back to life, screamed and cried but nothing could be done.  

10 years ago: My beautiful home burned to the ground with all my memories and those of my gone loved ones I had treasured during my whole life, it also burned my back, my neck and head. It took me 6 years to get back on my two feet.

Though Dr. Hamer is an MD in Traditional Medicine, most of his fascinating practice is in Alternative Medicine. Don't allow anything to stop you from reading his material, remember all emotional hits/shocks bring down our defenses and makes us vulnerable to the illness we know so well by now.

Well my dear,  I must now leave as I need to go to church it is Sunday the Lord's Day!

Good bless and keep you!

Marylou_II




  
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492898_tn?1222247198
Thank you for sharing all this, Marylou. How very sad, and horrible for you. I was thinking 'the ovary' for your son and the breast for your 'mom'?

For me it also totally fits. it was not so much an acute only situation as a chronic one and where when I thought it surely could not get any worse, and I had reached the limit, it did get worse, like several years worth of combat.

I have always known where and why my cancer came from, and why it was so very aggressive.

What's interesting though is that my twin sister who lives in Berlin, Germany has also had a very hard time during these past ten years and she also has very serious cancer that has been there for a while, I am sure, but was only discovered a few years later than mine, like 2 years.

There is no other cancer recorded in my family except one aunt who just died from it.

But with the twins I was so curious about what the author says about life in utero and then when you are the smallest baby?

For now, Kat
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