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chronic pain due to lumpectomy 2 yrs. ago!

geral
Posts: 132
Joined: Sep 2002

Hi! This is my 1st time on board! 2 yrs. ago I was diagnosed with infiltrating ductal carcinoma with 3 positive nodes and had a lumpectomy (left breast) followed by chemo & radiation. I have had CHRONIC PAIN since lumpectomy! Used Duragesic pain patch for 1 yr. but chose to stop taking med. Am using ice packs for pain. Haven't been successful in finding a dr. who will LISTEN or do tests to find out what is causing the pain. I realize it MAY be something I'll have to live with but would like to KNOW. It feels like I'm in a mammography machine with varying pressure. The pain increases the longer I'm 'vertical'. At first, could only be up for 1 hr. @ a time. Now, I can usually go for 4 hrs. Any longer and I 'pay dearly'. Have a frozen shoulder as a result of lumpectomy & pain; had over 40 sessions of PT - no luck. Will wait for it to thaw because any exercise with arm causes breast pain to increase. Have any of you experienced chronic pain due to lumpectomy? Also, do any of you know how to get a dr to to take you seriously?

24242
Posts: 1417
Joined: Mar 2001

I too am a chronic pain sufferer and have the past five years. To learn more about my condition I advise you to read Living Well With Cancer speech that is in the Gallery section of this site. A small percentage of us are very sensative to treatments of any kind including surgery. I have had neuropathic pain, nerve ending pain from surgery. I am double mastectomy and no reconstruction cause I couldn't bare more surgery and the possibility of more problems.
Find a pain specialist, they know why and how the body reacts. My pain specialist has traveled the world studying pain. Dr. Payne is a specialist that I heard speak from the States, I am in Canada, he is a fantastic doctor and actually met someone who went to him. He was featured on the pain area of this site I believe at one time. I take neurontine or Gabapentine 300mgs twice daily for nerve ending pain, amitriptolyne 30 mgs at night to sleep deeply (this drug helped relieve half my pain from the start), and for the past 6 months I have also been on methadone for pain in side that they don't know what it is, say it isn't cancer though, thank goodness. I refused to suffer and so should you and demand that people listen and help you because truly they are working for you. I have found there are more women out there suffering because they think it is truly part of the treatment program, it is not. I hope that this helps you in getting your issues addressed. I also know that they can now genetically test us to see if we happen to be the sensative types, before giving us any kind of treatments. 5 years ago they treated us all alike, not knowing any different and zapped the hell out of us even though some of our bodies just couldn't take it. Being 36 at time of diagnosis, these past 5 years have been tough but doable.
Be good to yourself first,
Tara24242

24242
Posts: 1417
Joined: Mar 2001

I also take alternative product to help boost immune system and it also has helped deal with the pain.
Tara

shirlann
Posts: 235
Joined: Oct 2001

Hi, it sounds to me as if it is time to go elsewhere. You need to go to a Breast Cancer Clinic. Somewhere that knows what you are going through. Somewhere the docs won't brush you off. Sloan-kettering, Dana Farber, UCLA, M.D. Anderson, UCLA, Mayo CLinic, doesn't matter, just a place where they do NOTHING BUT BREASTS. Heed this advice. You have waited far to long already. Gentle hugs, Shirlann

hummingbyrd's picture
hummingbyrd
Posts: 965
Joined: Sep 2002

geral, r u still having pain? I've just started having some tenderness in muscles over right breast which had the largest lumpectomy. They think its due to radiation changes. Have you found out anything different? hummb

geral
Posts: 132
Joined: Sep 2002

Since my 9/13 post...

I tried Lidocaine gel to numb the pain, but like 'evans' told me on this board, it didn't help me either. Although, for anyone else interested, it helped 'kathydrumm' alot.

I also tried Neurontin like '24242' and others recommended. I had far too many side effects and no pain relief.

I'm going to a new oncologist on 12/27 who is female. Maybe she'll be more understanding. For 2 years I've been telling male dr.'s that my breast feels like it's in a mammography machine. Obviously, they can't relate!

Recently, I went to a new family dr. for an earache. I hadn't planned on telling her about the breast pain because I'm so used to dr.'s only spending a few minutes with me, I didn't think I'd get a chance. She was very thorough and seemed interested in helping me. The problem is that she's been practicing less than a year, so she doesn't have alot of clout with other dr.'s (ya know, for the 'team' approach). Plus, she's associated with the hospital group I just left. I need one dr. to coordinate my care. I've gone to almost every type of dr. that could possibly help me, but they just keep passing me off. I'm debating on whether to 'hire' this new family dr. and see what she can do. It's a 'catch 22' situation- I've gone to so many 'highly recommended, well-established' dr.'s who aren't interested and don't spend anytime with me to try to find a solution to my pain. Maybe new dr's are 'hungry' for info and aren't as bogged down, but then they don't have the experience or clout.

My pain IS due to surgery. I'm sure a surgeon (I've seen at least 4!) could figure out what's causing my pain. Not one of them has even done any tests to try to find out. They just refer me to someone else who in turn, refers me to yet another!

I probably can't remember them all, but so far the doctors I've talked to about my breast pain are: 2 gen. surgeons, 1 breast surgeon, orthopedic surgeon, chemo oncologist, radiation oncologist, rheumatologist, 2 gynecologists, physical therapist, occupational therapist, psychiatrist, psychologist, pain psychologist, 2 pain doctors. I have not seen a neurologist. This I still plan to pursue. I mentioned it to the last pain dr. who seemed offended. He said that he could do the same tests on me, but he didn't.

The orig. surgeon said "I did extensive surgery in a small incision. Would you rather I had made a larger one?!?" I told him about my many other body pains. He said "I can send you to a pain dr. or a rheumatologist, but I'm not sending you to both!" Then he said "I've done all I can do for you." That's when I stopped going to him. I did go to the pain dr. As incredible as it may sound, he said 'I don't do breasts!'

The next surgeon wasn't listening either. He kept repeating that 'alot of women are afraid their cancer is going to return' as if that was why I'm in pain.

I just started going to the Medical College of VA in August when ultrasound revealed a new mass at the site of my lumpectomy. MCV is a hospital/university/national cancer center.
So far, I haven't been able to get anyone there to work with me to find a solution for my pain, not even the breast cancer coordinators! It took me 4 mos! to get anyone there to schedule me with the oncologist I'm scheduled to see 12/27!

I had a core biopsy 9/02 by a MCV radiologist whom I was very impressed with. Fortunately, the mass was benign!

My most recent surgeon (MCV)is supposed to be one of the best breast surgeons/specialists in the city. He's the medical director of the Breast Health Center I just started going to and the chairman of surgical oncology. It took me forever to get in to see him, and I had high hopes that he would help me. My first visit with him, he spent so little time with me that he wouldn't have recognized me going down the hall afterwards! The same stood true for my 2nd visit. This really concerns me because he's the head of the breast cancer multi-disciplinary committee, so if I can't establish a good relationship with him, how are the other MCV dr.'s going to treat me? He just said alot of women have pain. Then, when he saw I wasn't ready to leave, he referred me to a pain dr at MCV. I made sure that this pain dr. 'did breasts!' But after the fact (my visit), I discovered he's primarily a sports med pain dr.

I know it sounds like I 'let' these dr.'s jerk me around, but I am assertive/agressive with my healthcare. I've tried every approach-passive, aggressive, crying (which I try not to!). I've even tried altering my appearance (no, not like an undercover agt.!). Ya know, with makeup, without makeup, dressed up, dressed down. I know this must sound crazy, but I just wanted to try everything I could think of to get a doctor to take me seriously and care enough to try to help me.

I truly believe that if I LET them, they will keep me in their loop forever. I feel I have already been to a few dr.'s who have the knowledge/expertise to help me, but I can't MAKE them.

I also have financial obstacles, so seeking treatment outside of this city is not an option. I just went on Medicare, so I do not have prescription coverage. I'm really trying to avoid meds when possible because I'm extremely sensitive to them. If I do find a med that works then I'll apply for that PAP (Patient Assistance Program).

I'm really anxious about my fist appt. with the female oncologist on 12/27 appt. As I mentioned before, so far I haven't had any luck with the surgeon and the breast cancer coordinators at this facility (MCV). I plan to go in there with all my notes and a friendly, positive attitude (as I've done with many others). I just hope this one listens.

MY MISSION STATEMENT (like Tom Crews in 'Jerry McGuire'!): I DO NOT WANT TO JUST MANAGE THE PAIN (i.e., meds), I WANT TO KNOW WHAT IS CAUSING IT BEFORE I ACCEPT THAT I HAVE TO LIVE WITH IT THE REST OF MY LIFE!

I'm in so much pain now from being up so long and typing this long message. Hard to hold the ice packs on while sitting up!

Thank YA'LL for listening!

Take care...
Geral

24242
Posts: 1417
Joined: Mar 2001

Hi Geral,
Even though I agree with what you are saying about wanting to know what is wrong with rather than just treating the symptoms, that is difficult for doctors to do. I spent 21 months in pain, from tumor pain then to various pains after my surgery. Then I had chemo more pain on top of pain already there. The doctors cared only about me finishing treatments not about the pain I experienced. Another year later still in pain and no one knew why. Finally got meds that help, but still suffered Pain. I think you would think differently about your thoughts on meds if you could find some that truly helped. Pain is the cause of much depression and that compounds all other problems. I never use to take an asprin for headaches or anything, just toughed it out. That is what the doctors wanted me to do too, but day in and day out with pain is enough to drive you crazy. It affects all aspects of our quality of our lives. I urge to to consider getting your pains controlled and the world could be a whole lot brighter as I have found. You might try alternative products if you don't want to use conventional meds but you have to do something. I urge you to get your pain controlled it can make all the difference in the world. I am on methadone and actually have a life now which I didn't have before. I couldn't do much of anything cause everything I did contributed to my pain. I have found finding out what is wrong is just disease names it doesn't change the pain I have to deal with. Now I believe that there is just too much out there for anyone to have to suffer. Life is just too short for all of that. I am back working and living a fairly normal life as long as I stay on me drug regime. No one cares really why the pain is there, but they do seem to listen when you talk about your quality of life or lack there of.
Good luck to you, be good to yourself,
Tara

geral
Posts: 132
Joined: Sep 2002

Hi Tara!

Thanx once again for your advice and sharing your experiences. I agree that day in and day out with pain IS enough to drive you crazy. I'm halfway there!

I know there's a chance I may have to live with this pain. The reason I want to know for sure what is causing my pain is the slight chance that it's something that could be fixed. I spoke to an ACS oncology nurse who said there may be a nerve that's pinched due to surgery. I have received many theories from caring individuals such as her. My problem is that I can't find a doctor to at least TRY to find the cause. I realize it may be impossible, but how can I accept the pain when NO attempts have been made to find the cause?

I have tried many meds including a narcotic, Duragesic, pain patch which I wore for a year. Sometimes, it helped the pain, but most of the time, I still had to use ice packs & heating pads. When I first started using the patch, I would sleep for 14 hrs. at a time. Later, it would keep me up for 40 hrs.! Also, I had tests done which showed that my stomach was emptying too slowly. The dr. felt it was from the pain med.

Before Duragesic, I tried other pain meds: Darvocette, Hydrocodone, Ultram. They all made me extremely nauseated.

I, like yourself, am very sensitive to meds and have lots of side effects. Do you have any side effects with the methadone?

I plan on taking your advice about stressing quality of life to my new dr.'s. I have mentioned it to some in the past.

Thanx again for your time,
Geral

inkblot
Posts: 705
Joined: Jul 2001

Hi Geral:

Please check your e-mail. I've left some info there which I hope may be of some help to you.

I feel so badly for your pain! It sounds incredible. I cannot imagine it just going on and on and on like this. Whatever is up with the physician's you've seen, I cannot fathom, but you do need some relief. Chronic major pain like you're describing can indeed interfere with your functioning and really start to drag you down emotionally. Is your pain a burning pain, shooting, intense, dull, deep, or throbbing? Did you try to describe it, using some of those terms to the docs you've seen? They should have asked you to describe it in such terms really.

It's so disappointing to hear that so many doctors have basically ignored your pain or "referred" you! I'd consider just pointedly asking them WHY they feel they cannot address it, when they offer yet another referral.

I feel for you. I think I'd be so frayed and frustrated after so much time in pain that I'd be completely out of patience and wouldn't take quite so much care in expressing my needs and my feelings to a pain specialist who cannot even get the tests done! Of course, we all know this would net us a psych referral, which, of course, is the physician's standard approach when they are not helpful and the patient isn't all smiles and accepting of their "live with it" diagnosis!
Sometimes it seems difficult to win. BUT, don't give up. Help has to be someplace and it's just a question of finding it!

Love, light and laughter,
Ink

geral
Posts: 132
Joined: Sep 2002

Hi Hummingbyrd!

Thanx for asking. You'll find my LENGTHY response to your question 'r u still having pain?' either above or below this response.I also have tenderness in the muscles over my affected breast. Maybe that is due to radiation like you said. The chronic pain I've had in my breast started immediately after the lumpectomy before chemo & rad.

I hope you're feeling pretty good considering all you've had to go through with cancer.

Take care...
Geral

geral
Posts: 132
Joined: Sep 2002

THANK YOU WEBMASTERS FOR RE-POSTING MY 9/13/02 'RE:CHRONIC PAIN DUE TO LUMPECTOMY' POST! (I mentioned to Tony on the 'Contact Webmaster' board that I planned to re-post this message and select the 'eye' icon, so I can keep track of responses. Next time I signed onto the BC board, one of the webmasters had already re-posted it for me! Aren't they wonderful?!? -Geral

24242
Posts: 1417
Joined: Mar 2001

It isn't easy to get doctors to act and diagnose pain that is often very common. I am sorry you have had to suffer so, it took me almost a year before anyone would take me serious, then found to have several nervous disorders and several kinds of arthritis. While I was having chemo no one wanted to talk about the pain all they wanted was to get me through the treatments. When in fact pain is a symptom directly related to what they were doing to me. I spent 10 months fighting with my doctor and finally went back to cancer clinic to get the treatment I needed. Pain specialists there more equiped to handle different kinds of pain. There is lots of side affects to consider when dealing with cancer treatments, even surgery can give us a few. Hope you find the help you need soon, it is hard on us constantly being in pain.
Be good to yourself,
Tara

geral
Posts: 132
Joined: Sep 2002

Hi Tara!

Thanx once again for your encouragement. Your stories give me hope that I too will one day find pain relief.

I was typing a lengthy update on my pain while you were sending me your response, so if you haven't read it yet, please do. Allow yourself about 10 min. to read it!

Also, I posted a response to your 12/2 post re:staging. In case you haven't seen it, the easiest way to access it is: go to the bottom of this page and search on the keyword 'grade', it will take you to my response.

I hope you're doing well and enjoying being back in the working world.

Take care,
Geral

ktinkey
Posts: 173
Joined: Mar 2001

Hi Geral,

I hope this works. I had trouble sending you an e-mail. I am from the Richmond, Virginia area also. Actually I live in Louisa County at Lake Anna, but all my doctors are in the Richmond area. I am not familiar with the doctors at MCV, since I never went there, except for my radiation. What doctor did your lumpectomy? And which doctor are you seeing on the 27th? I go to Dr. Kelly Hagan as my oncologist, and I like her a lot. She always takes the time to listen and discuss matters with me. Most of the time, I have a list of questions or info I have printed off the internet and she takes the time to go over all of them with me and make sure I understand what she told me. I used to work in the pharmacy at Ukrops for 10 years, so I am familiar with several doctors. If I can be of any assistance to you, please let me know. I am a 2 time BC survivor with the last diagnosis 4 years ago at Stage IV. I am doing terrific. I had a mastectomy the first time and never had a lumpectomy, as you, but hopefully I can still help. Just talking helps too.

God Bless,
Kathy

geral
Posts: 132
Joined: Sep 2002

Hi Kathy!

I am ELATED that I've found someone in the Richmond, VA area to talk to! I was so excited when I saw your post that I cried!

I'm sorry you've had to go through breast cancer twice. It's wonderful to hear that you're doing so well.

Dr. Bruce Morgan @ JW did my lumpectomy. My appt. on 12/27 is with Dr. Mary Helen Hackney, Oncologist @ MCV/Stony Point whom I've never seen. I've never heard of Dr. Kelly Hagan. She sounds like the type of dr. I'm looking for. My previous oncologist, Dr. Gonzalez @ JW made fun of me when I took lists of questions on my visits and didn't want to take time with me.

I would really like to talk with you more. My e-mail address is 'bgwinn1@netzero.net'

Thanx so much for your response!

Take care,
Geral

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