Tumor wrapped around nerves and blood vessels?

dcjoslin56

Greetings;

I have Stage IV breast cancer, diagnosed in May 2015. PET scans showed 5 tumors,4 of which have shrunk to almost nothing, while taking Ibrance and Femara. Hooray! The problem tumor is in my left armpit, a large one, and I'm told it is wrapped around nerves and blood vessels. As such, it is inoperable. The result of this is that my entire left arm, from shoulder to fingertips, is completely numb and is painful. It feels like someone has wrapped my entire arm in duct tape, as tight as they can. I am a pianist, so you can understand my frustration with having a numb, painful left hand. I'm at the point where I can't play with my left hand; it's time to admit it! I give piano lessons, play the piano in church every Sunday and play at a senior citizen home twice a month for a sing-along. My students' parents, my church and the center are all so supportive and have not given up on me. When I demonstrate part of a song for students, my left hand can't feel the keys, nor is it strong any more, and I play wrong notes. Has anyone else experienced this numbness in their arm because of a tumor?

JFL

This sounds terrible. I haven't had this issue but wanted to say I hope you find a solution. Can they radiate the area? Another option may be to try a chemo to shrink that tricky tumor and then resume Ibrance/Femara.

zarovka

I don't have this condition, but if I did, I would be vocal, get a second opinion. A third opinion. You doctors are probably thinking: "Hey 4 out of 5 ain't bad!" Don't let them off the hook. It's not good enough when these are the consequences. I would not want my arm wrapped tightly in duck tape for one minute. There are creative ways to shrink tumors with heat and localized chemotherapy. It's so accessible in the armpit ...

You might review bestbird's summary of mbc treatments for ideas to pitch to your doctor and get them thinking. There is nothing directly relevant in there (that i recall) but should get some ideas.

It's hard to ask for improvements in quality of life when there is a basic fight to just survive going on. But I think they can get creative and do better.

>Z<

Bestbird

I am sorry to hear of your situation and would recommend consulting with a Radiation Oncologist. It may be possible to radiate the area to reduce the tumor size and make you more comfortable.

Additionally, if possible, obtain a biopsy of the tumor since it may have a different ER, PR, and/or HER2 profile than your mets elsewhere, which would have a potential impact upon future treatment decisions.

You may also wish to seek Palliative Care, which is different from Hospice. Below from my MBC Guide is a detailed description.You (and others) are welcome to request a complimentary copy of the 120+ page booklet by visiting the top of this page: https://community.breastcancer.org/forum/8/topics/831507?page=2#idx_32

With best wishes!

Palliative care is meant to help anyone with a serious illness. It differs from hospice care in that the patient can continue to receive standard treatment for their condition while on palliative care.Patients can request it at any age and any stage of an illness (even upon diagnosis), and it can be used along with curative treatment.Palliative care is not dependent on prognosis.With palliative care, patients can expect to have more control over their care, along with a comfortable and supportive atmosphere that reduces anxiety and stress.The patient's condition and situation are reviewed regularly by their palliative care team, and they are discussed with the patient to make sure that the patient's needs and wishes are being met and that treatments are in line with the patient's goals.

Palliative care can reduce symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping.It addresses the whole person and helps them to carry on with daily life.It can improve one's ability to go through medical treatments and help the patient to better understand their condition and choices for medical care. In short, it enhances the patient's Quality Of Life (QOL).

Therefore, patients may wish to start palliative care early for best results, and they should request it from their doctor instead of waiting for their medical team to bring it up.

Most insurance plans, including Medicare and Medicaid, cover all or part of palliative care treatment.Palliative care is generally available in a number of places including hospitals, outpatient clinics, long-term-care facilities, hospices, or home.Usually a team of specialists, including palliative care doctors, nurses and social workers, provide this type of care in conjunction with the patient's doctor.Massage therapists, pharmacists, nutritionists and others might also be part of the team.To obtain palliative care in order to manage cancer or treatment side effects, the patient should speak with her or his doctor or nurse. Alternatively, patients can look up Palliative Care providers in their area at: http://getpalliativecare.org/providers/

From:http://getpalliativecare.org/whatis/faq/#what-is-the-difference-between-hospice-and-palliative-care and http://www.choosingwisely.org/wp-content/uploads/2014/09/Palliative-Care-Support-at-any-time-during-a-serious-illness.pdf

LindaE54

I have a large axillary node met near the armpit. It's not causing me problems, at least for now. MO said they would radiate if/when it acts up. Congrats on good results and I hope they can fix your problem soon.

JudyKRN

I have an inoperable tumor under my right armpit. It has shrunk with letrozole and Ibrance but about 2 weeks ago, I began to have shooting pains and periods of tingling, down my arm and cannot lay on my side in bed. I have to elevate my head, with 3 pillows and stay on my back. I had an MRI and it is a combination of the tumor and arthritis, causing the nerve damage.

I am to begin radiation treatments (10 in all) on Thursday to further reduce the tumor and hopefully relieve those symptoms.

SonnyB

I would also suggest talking to a radiation oncologist. At my original diagnosis I had a tumor wrapped around my spinal cord. It was treated with 15 rounds of radiation and that helped tremendously. It shrunk enough that there was no longer a worry of paralysis and dealt with most of the pain. Hope you can find relief!

pajim

dcjoslin56, I'm with zarovka on this. Explain to your oncs that this is a quality of life and livelihood issue. They should leave no stone unturned. Sometimes I think oncs feel that if we're alive we should be happy. You also need to LIVE your life.

Radiation should indeed do the job.

JudyKRN

SonnyB, how long, into your radiation treatments, did you feel relief? I've only had 2 treatments and there has been no change in the pain. Thanks.

SonnyB

It actually took awhile. I had 15 rounds of radiation but the pain slowly reduced. It actually took a few months. Hang in there!

JudyKRN

Sigh.....THANKS, I will!

mlc96

I have the same issue. My right arm started swelling last year, everyone assumed it was lymphedema, several months later when I completely lost the use of my right arm, and I'm right handed, I finally got the doctor's attention and had some scans. It turned out to be a large lymph node tumor that spread into the shoulder tissue and wrapped around the venous return. I can't even describe how painful it was, then learned I had mets to my cervical, thoracic, lumbar and pelvis. 16 weeks of Taxol did shrink them, and my arm swelling has mostly cleared up, but a year later my arm is still numb and painful. Just started some PT, hoping to get some relief.