I am 61 years old. I had a bleeding nipple in November of 2002 and in May of 2003 the doctor found cancer. I had the lumpectomy and they removed 1/3 of my right breast then. I followed up with 6 1/2 weeks of radiation. I got lymphedema in the right arm about halfway through the radiation. No one at the cancer center was alarmed and tried to tell me that the radiation didn't have anything to do with the pain and swelling in my arm and hand. In November I was in treatment for lympedema when I had a blood clot go through my lungs. I was in a coma for two days. My family was told to come and all expected me not to live. I lived. The doctors at the hospital said the clot was caused by radiation. I am now on Warfarin. In February of 2003 I was in for my mammogram and they found cancer in the left breast--it was not there the year before. I had the lumpectomy on two cancers in that breast and we waited for the pathology report. It came back clean, but we still had to go back in and get clean margins. The surgeon suggested a double masectomy or risk getting more cancer in either breast again. After some discussion with my family I opted for the masectomy. When the pathology report came back from that surgery they had found cancer in the lymp node on the right side...the radiated side from the year before. I was in terrible pain of course and had wondered if I had made a terrible mistake by opting for the masectomy. When they had discovered a missed lymp node with cancer I felt better about taking the radical surgery. I followed up with 4 rounds of chemo and am now on Femara, after being two months on Arimidex. I couldn't stand the leg and back pain and the all over sickness that came with Arimidex. So Femara isn't as bad, but it still sucks. I don't sleep at night and little in the daytime. I have the all over achy-flu type feeling, the nausea and stomach/bowel upset. Then there's the bone pain and to make matters worse, the pain across my chest has increased two-fold. I was just getting to where I didn't need the percocet before starting the Arimidex. Now, I'm back to the intense pain I had after surgery. I don't know how long the doctors will allow me to keep taking narcotics for pain. I'm allergic to most othere types of pain meds. Also I have heart problems and I fear that the Femara is reacting to my heart meds.
I also have two hard, softball sized lumps under the incisions, the right side being the worst. They are very painful. The doctors seemed unconcered and keep telling me they will go away. It's been over a year now and they have only got harder and more painful. I am afraid of another misdiagonis like I was with the swollen arm. It wasn't lympedema. I had a blood clot in the arm pit and the massaging broke it loose and nearly killed me.
My chest feels like it is filled with shards of brick and a steel band over it being tightened by a wrench or something.
How does one know if the cancer has settled in the bone when they are on Femara or like drug since the bones ache/hurt all the time anyway?
Dorothy B
Hi. I am 37 years old, and I have been on Femara for one year now. I have stage IV breast cancer with mets in my bones, liver, spleen, and many lymph nodes. I, too, have a lot of aches and pains from the Femara. The only way I know if it is from the Femara and not an increase in my bone mets is by having a bone scan. I have just recently had a follow up bone scan and no changes were seen. This is the only way that I think they really know how to tell the difference from the two. I have to take Oxycontin all day and also use Ibuprofen now, too. I continue to be able to work at least part-time and take care of my three young children with using the pain meds. Although the quality of how I could do those things is not quite up to par as before, I am just glad that I can do them to some degree. I am like you, though, without the pain meds, I can barely move sometimes. I just keep taking them on a schedule so as not to pass a dose so that I don't get too bad with the pain anymore.
I hope this helps to settle your mind some. My pain locations are primarily in my hips, low and mid back, knees, hands, elbows.
Also, I have started doing Accupuncture and that has helped some, too. If you have access to this, this might be something to try.
Hi Dorothy B. I am 45 yrs old and had a mastectomy last July 2004 with lymph node involvement. I am starting radiation shortly. I have suffered non-stop pain in my surgical site and underneath my arm where the lymph nodes were removed, and have to take oxycodene for pain...I am allergic to ibuprofene. Sometimes the pain is horrendous in this area, and I have been told radiation will likely worsen the pain to both areas, so it is not something I am looking forward to. I had wanted to avoid having radiation but due to lymphatic/vascular invasion, my age at diagnosis and close margins (which pathologist report states cannot be considered clean) the radiologist tells me I must have it because I am at risk 70% of reoccurrence in the primary site. Last appt. she looked me seriously in the eye and asked me if I ever thought about my death?!! I guess she was trying to get her point across that I need this radiation, pain or no pain down the road and she felt more increased pain to this area, plus damage to the lung and heart was a risk worth having to reduce the risk factor I have now! It is compounded by my oncologist and surgeon who do not think it necessary to have radiation, and the latter said I was such a wee thing, he did not want to put me through anymore than was necessary -- the radiologist was furious with them!! It is hard to make the 'right' decision sometimes with so many different opinions from so called professionals who have your best interests at heart...what I have learnt from all of this is to be my best advocate and listen to my intuition more. By the way, in Jan 2004 I was told at an annual physical I had a small cyst which was benign, nothing to worry about, as it was a bit of jelly! If I did not listen to my intuition by April 2004 when the pain increased, the lump increased and the pain under my arm began, along with changes in my breast shape and nipple, I was told by my surgeon due to my aggressive growing cancer I would have been dead within six months!! We all have our own stories don't we? Mine now is to hope this pain lessens and the radiation does not worsen it, or that I do not get lymphedema as a result of the radiation.