After a lumpectomy, lymph nodes removal, chemo and three months following radiation, my dearest friend of over 40 yrs began experiencing increasing arm pain. From research and suggestions here for pain relief, I printed out info. which prompted a visit to her pcp. He immediately referred her to the oncology surgeon.
When asked for referrals to physical therapists, pain mgt. specialists and/or pain meds, the surgeon told her he didn’t “do” referrals and told her that pain was “something she would have to learn to live with”. I was beyond shocked and disturbed at this.
Following that visit, her arm & hand began swelling and a red horizontal swath from under arm above scar tissue and across to breast appeared. The 1st p.t. her pcp referred her to, ordered very tight compression sleeves for her arm & hand.
While the therapist’s very light, gentle massage was soothing, she was told to wear the sleeve except for bedtime sleep. The swelling increased to the point that another visit to the pcp last week, gave her, at last the diagnoses of Lymphodema and Cellulits. She was put on Gabapentin, 100 mg, 3x/day for the pain and on antiobiotic, Clindamycin: 300 mg/3x/day for the cellulitis (infection from redness).
Researching Gabapentin alarmed me especially because it is listed primarily as a seizure med and my friend was on seizure meds for several yrs ago because of seizures. I also read that it has serious side effects and is not to be stopped suddenly. None of this was told my friend.
What are other patients taking that help for MBC pain? The pcp referred her to a second occp. therapist who is approved for her ins. He ordered a manually adjustable sleeve and told her about a pump sleeve which costs $3,000.
While I’ve read that there is no “cure” for the lymphodema, surely there may be some meds that can help? Both conditions, if not treated can become very dangerous, can spread and become even life threatening.
I do not want to become an alarmist for my friend without more information. Any recommendations or sharing of what may be helping others here, whether meds, p.t., sleeves or other specialists would be so appreciated.
I would like to encourage her go to a different MBC specialist, if her pcp would refer, and maybe one connected with our teaching hospital vs the one with our private, large hospital where she has received all treatment to date. Could she get to another specialist without doc referral???
Any suggestions, recommendations would be so gratefully appreciated.
Written by
FlowerPreciousLover
To view profiles and participate in discussions please or .
I don't have any good info re: the lymphodema, cellulitis, or pain (so sorry...) but I'm wondering what country you're in...I think this will help others to answer the questions re: referrals.
Also, for what it's worth, I think you are wise to seek a different MBC specialist, e.g. at a teaching hospital. If you're in the US, you can search for NCI "Comprehensive Cancer Centers" to find the top cancer research hospitals in the country.
Thank you Lynnfish for your response and great suggestion. We live in west Tx in a small U.S. city of over 200,000. I did not know of the NCI "Comprehensive Cancer Centers" site but will check it out. I've heard that M.D. Anderson in Houston, Tx is known for its cancer work.
Learned today that my friend is scheduled for bone density, lab work and mammagram March 10th and then will see current surgeon on the 18th. There is no way she'll be able to get her affected arm up in position for the mamm. but was told that these are a standard part of a 5 yr tracking for MBC patients.
For sure I'll be asking her hubby and her to tell the oncologist of the previous seizures and meds because both came on the scene years after she went off those meds. Hope to hear from other members before telling them of info gained about Gabapentin for seizures and not stopping it suddenly.
Another challenge is that since her treatments, her short term memory is very problematic because she keeps "losing words" with almost every sentence or new topic and relies heavily on hubby...and even me... in both phone and person-to-person conversations to fill in the blanks. Have heard the term "brain fog" ff cancer treatments but don't know if anyone has really experienced this. She is 77; I'm 76 and he is 85. He is simply wonderful to and with her but neither spend time on the computer. Thanks again for your reply.
MD Anderson IS an NIH designated "CCC", so that would be an excellent choice.
And you all are in the U.S....I assume she's on Medicare or Medicaid? Sounds like an HMO option with the questions re: PCP referrals? I don't know much about these programs, but lots of women here have great experience with them. To get info, you might want to post again with that in title and/or use the search bar (upper right) and search on some key words/phrases? You can choose "my community" from the options that will appear on the right to limit it to breast cancer patients...
Regarding the "brain fog"....many of us have that from the meds, plus I think the stress and sometimes age contribute. If it seems that the issue might be something different/treatable, perhaps she can get evaluated? I know it's difficult to think about anything but the cancer, lymphoma, etc., when you're in the throes of it -- we have too many doctor appointments to begin with! -- but if there's something else that would benefit from early intervention, it might be worth pushing for it?
I’m a little confused. Is she being followed by an oncologist that is not a surgeon as well as a surgeon and her primary care doctor? The oncologist should be following her for cancer care plus follow up testing. He can definitely refer for pain treatment. I have run into a surgeon in my area who has done lots of mastectomies but says, oh, you can go to an oncologist if you want, but you don’t need to. (Needless to say, he did not do my surgery.). If she doesn’t have her own oncologist she should be seeing one.
I would also suggest, if you are able, that you ask if they want you to go to some early appointments with them to take notes.
Thanks for your response and question Red71. My friend was referred by her pcp to a breast cancer surgeon initially and the pcp and breast surgeon are the only two docs seeing her for her cancer. I haven't had cancer and didn't intend any confusion but thought an oncologist and bc surgeon were one and the same?
Thank you so much for the clarification. Neither doc has mentioned her seeing an oncologist and we didn't know to ask for a referral. Your response helps me better understand why the surgeon, the only cancer specific doc she's seen throughout, made the comment he did about "no referrals and the pain was something she would have to learn to live with".
She has an apptmt for mammagram, which she won't be able to lift affected arm to do; bone density and blood/urine labs scheduled for 3/10 and was told this was part of the 5 yr ff-up protocol for cancer surgery patients. She is to see the breast surgeon on 3/18.
Yes, I will offer to go with them to any appts. for note taking and suggest asking for an oncologist referral.
My oncologist followed me for 5 years, giving me medication that was supposed to keep the cancer from reoccurring. He saw me monthly and was great about giving me advice. His clinic has social workers and pain therapists. When I was diagnosed 2 years ago with breast cancer in my bones he became my primary doctor for that. Your friend’s oncologist should test her cancer to see what it’s chance of reoccurring is and treat her based on that information. Usually surgeons are just concerned with the surgery and the immediate aftermath and then they are done. Good luck getting her care figured out. You are a good friend! I am in Oregon, so the care shouldn’t be much different in Texas.
Thank you Red71. Can't remember if I've responded to this post and those that followed. We had an emergency Sat. Know that I am grateful for each post!
Hi there. I'm sorry your friend is having such difficulty with her lymphedema. She has a great friend and you to watch out for her.
I have had lymphedema. Since 2011 just a couple of weeks after my bilateral mastectomy. It is manageable, but she will have to learn to live with a certain amount of pain. I use a Lymphediva compression sleeve everyday. (Lotus Dragon tattoo style) I try not to stress my arm and elevate it whenever I can. She needs to be especially careful of breaking the skin. No manicures! If she has a cat, tell her not to get a scratch or bite. The Flexitouch pump you mentioned is wonderful, but not really practical for everyday life. I bought a used one privately , and I think I paid. $2,000 for it. It was a waste of money because the garment was not fit particularly for me. I also have a night sleeve that was custom-made and covered by insurance. When I'm having an especially difficult time, I will sleep in it. It looks like a huge green oven mitt. My grandson thinks it's a puppet. For the lymphedema behind my implants, I wear a compression camisole almost twenty-four hours a day. I like the Spanx brand. There is also have a brand called My Assets. She will need to experiment with the firmness and style. I can't wear anything with a band underneath my implant. . It's extremely painful.
I was given Gabapentin years ago. I lasted about three days before the word salad started. I think it is a terrible drug and would never take it again. When I'm hurting, I either drink a glass of wine or take a couple of Advil. Rest is the best thing for the pain. Compression is the second best thing.
The cellulitis is of great concern. In fact, I was in the hospital for 4 days on heavy-duty antibiotics just a week ago. They wanted to send me home on a PICC line. However, I opted for an infusion of Dalvance. I'm fairly certain the cellulitis started when I barely nicked my finger on the foil from a wine bottle. It was the first time in nine years. I had broken the skin on that arm. The cellulitis was extremely painful. Luckily, I knew what it was when I saw the redness and rushed to the emergency room. I was admitted and on Vancomycin within the hour. Please tell her to be careful!
Lastly, it sounds to me like she needs a new doctor. I am headed to MD Anderson for my first consultation in March. Having a doctor you can rely on is so important!
Should you or your friend have any specific questions about the lymphedema, please feel free to message me. There is so little support for the condition, you kind of have to find your own way.
All the best and thank you for being such a sweet friend to her.
Curious to know why you said you would never take gabapentin again? I have just been prescribed it by a pain specialist because I am experience sudden severe lower back pain. I was also prescribed 3 5 m.g of percocets a day. My friend is prescribed gabapentin for her restless legs syndrome. I know it is used in lower doses for nerve pain. What experience did you have on it. My pain specialist suggested I take it at night as it may make me drowsy. I have done so and am sleeping much better on it. This is ONLY my first week on it and I go back to my pain specialist this Tuesday (I saw her last Tuesday for the first time).
So far the sleeping part is true. I am sleeping longer and better well-rested but I do have to increase it by the second and fourth weeks. Curious to know if you had any bad side effects from it that you say you would never want to be on it again.
Andi, thank you so much for your wonderfully informative post. I am so grateful to be able to be a part of the HealthUnlocked comm. My primary group is Chronic Kidney Disease; I'm stage 3; and its members, too, have provided me invaluable information, suppt and links for more help.
Special thanks for the brand names and help with bras. They shopped yesterday for one but don't know if any was purchased. No cat for them but adorable Yorkie. They are my caretakers for Precious cat when I'm away...she hides at the sound of another person; will share all of the these posts with them and caution about manicures.
She says the Gabapentin helps the pain but if she'll not join me in a glass of wine, I'll drink some in her honor...smiles.
I know of M.D. Anderson as a reputable cancer center and am so glad you will be going there in March. They may want to consider a change to a local oncologist before considering out-of-town but will share.
So touched by your kind offer and know she will be too with any specific questions. Both cancer and kidney life is like being transported to a foreign kingdom where finding others who are walking the walk and willing to help and share can be difficult. Again, Thank You.
Hi, I developed lymphoedema in my left arm following removal of axillary lymph nodes in 2016. Make sure your friends gets professional advice to avoid damaging the lymphatic system.
There is no cure but there is a variety of treatment. Your friend needs to learn how to do self lymphatic drainage which is a very gentle massage technique which sweeps the excess fluid out of the tissue abs stops it building up. Professional MLD must always be done by a lymphoedema specialist. Never allow anyone who isn't qualified anywhere near the lymphatic arm.
I had LVA surgery in summer 2017 which has been very successful. I was able to stop wearing compression sleeves and gloves in January 2018 and apart from a little swelling in the back of my hand which I control with massage I am lymphoedema free, though I accept that not everyone gets such good results.
Being diagnosed with lymphoedema is a horrible shock especially after a cancer diagnosis, but there are treatment options and charities like the lymphoedema support network have loads of information on managing the condition.
Hi Julie - I would be interested in learning more about your LVA surgery - where it was done and what type of surgeon? I have right arm lymphedema as I had 18 lymph nodes removed at time of mastectomy (10 positive) and subsequent reoccurance had radiation front/back which damaged the rest, No one told me to avoid carrying anything heavy, flying with a compression sleeve and not to have deep tissue massage anymore...I did all 3 and voila...developed lymphedema for life. My swelling is more my forearm/elbow...fortunately not so much in my hand. I startedwith bandaging, manual lymph drainage by specialist then transitioned to arm sleeve for day and nighttime arm garment. I've had it for 10 years now and in past few years have had 4 bouts of cellulitis even though I haven't had any cuts/injuries. Would love to explore surgery in order to get better. You can private message me if you want...thanks, Jane
Hi Jane 😊 In the U.K. the NHS considers this operation to be cosmetic surgery and so doesn't pay for it and because it doesn't, neither will private health insurers. Insurance companies in the USA will dependent on the policy.
It's available privately in several U.K. centres. I went to the oxford lymphoedema clinic, but I believe it's also done at the royal marsden and in York. The NHS trialled it in South Wales, not sure if that's ongoing.
The team in Oxford are great and very realistic about what they can achieve.
Specially trained plastic/lymphoedema surgeons use micro surgery to join the lymphatic system into the veinous system in the affected limb and so the fluid is drained before it reaches the blocked area. The operation is done under local anaesthetic and takes around 4 hours. You then have to rest the limb for 2 weeks. I have 4 small scars.
Unfortunately lymphoedema damages the one way valves in the lymph system and if the damage is too bad it means the operation is unlikely to be successful, so the earlier it's done the better.
The first trip to Oxford is for an assessment where injected green dye is used to map what is happening with the lymph fluid in the limb. At this point they will tell you whether it's worth attempting the operation or not. They warn you that even if the operation goes ahead there is no guarantee of success.
For me I found it well worth having that appointment as a lot of information we are given about lymphoedema is completely out of date. They gave me a lot of realistic information about how to manage the condition. It was very reassuring.
It was a tough decision. The operation is a lot of money. At the time I was in remission and was worried that if the cancer returned it would be money wasted. I also needed a new car so had to choose between the operation and that, I couldn't afford both. I decided my long term health was more important and I am now driving an 11 year old car with 190,000 miles on the clock and thankfully it's still going. But it was a huge gamble because the operation could have failed and it's a lot of money to lose!
Of course the cancer returned, but I've realised that I'm happy I went ahead as the cancer treatment has compromised my immune system and I don't have to worry about cellulitis so much. The lymphoedema isn't cured but I think it's as close to a cure as is possible.
Thank you so much for your information, Julie2233. I've just found a website demonstrating Manual Lymph. Massage and more info on pump compression device from U.K.
We live in U.S. and absolutely agree that only prof. trained MLD specialist should be treating or manipulating her arm/hand.
Yes, it is a shock to have this new diag. and complication but so good to get help and suggestions for her. Will check out the lymph. suppt network, too.
Very happy congratulations on your 2017 Successful LVA surgery! To be mostly lymph. free must be an incredible gift.
There is a lot of out of date and contradictory information still being given by lymphoedema health professionals and a lot of other health professionals don't even know what it is. The lymphatic system hasn't been well studied.
When you are vulnerable the restrictions feel like the end of the world but in reality as long as you are sensible, do the massage, moisturise, stay well hydrated, wear the compression and act as soon as you suspect an infection, in most cases you can live a normal life.
Amongst other things, I was told to limit how I used my arm and avoid heat. The lymphoedema team told me that this was out of date and I could do what I wanted as long as I gave the arm time to recover if the swelling increased. You soon learn what aggrivates the condition.
Yes the success of my surgery has been a wonderful gift. I just wish it was more widely available.
Your friend might find a book written by Dr Peter Mortimer called 'Let's Talk Lymphoedema: the essential guide to everything you need to know' useful. It the best book on the subject that I've read.
Yes, Julie, I appreciate what you wrote about the confusion and contradictions among the health professional community regarding treatment of lymphodema. Thank you for the book suggestion, too. Will see if it can be ordered. Thanks again!
I was referred by my onco to the palliative team (also located at the same cancer center in Brooklyn, NY. ) For the first time in 3 years since my diagnosis, I started experiencing severe lower back pain. I met with the pain specialist for two hours on Tuesday (first visit). I was given 5 mg. of percocets to take three times a day (New law states that unless a patient has never taken the drug or has not been prescribed it in three months, the pain specialist can only write a rx for a week's supply of opiate meds for the first week. After this, (I am meeting her again this Tuesday), she will be able to write me an rx for more opiates. The rules for opiate rx keeps changing.)).
I was also prescribed gabapentin (100 mg.) to take at night once for the first week. Then take two at night for two weeks, and then up it to 3 capsules a night going forward. Gabapentin is used for nerve pain and for many other purposes. My pain specialist did tell me that I cannot just stop taking it bc I mentioned that I occasionally give myself a break from Verzenio for a day or two if the side effects get to be too much which when she mentioned I am not supposed to just stop taking it. She also casually mentioned that she may be putting me on an anti-depressant which also helps with nerve pain. I guess I will learn more on Tuesday, my second meeting. Another one of my friends in FL was prescribed gabapentin for her restless leg syndrome.
She also gave me a rx for a physical therapy center and told me I could choose which one I wanted to go to. She did not recommend one. I go to Maimonides Cancer Center which won many awards and they have a breast Cancer center, and various different types of buildings throughout Brooklyn such as a physical therapy center for joint and bone pain. I prefer to stay within the "Maimonides" family as they have access to all my information and meds. So she gave me an rx for any physical therapist I choose to go to, but I choose one that is part of the Maimonides family.
There are situations in which the onco should be responsible for (referrals to a palliative team which deals with pain, anxiety and depression.) But again, my onco works at a large cancer center which has many different departments on site. The pain specialist, part of the palliative team, will also be giving me urine tests to ensure that I am taking the pain meds and not selling them (LOL)...It happens. My onco cannot deal with my cancer and the pain so now my pain will be managed by the pain specialist, not my onco.
Then there are situations in which my onco will tell me to to go my primary if she does not think it is related to the cancer. She can only handle my cancer related issues, not the pain so she referred me to the palliative team to handle that.
My primary will only handle issues that are not related to my cancer.
Although it sounds like you are a great friend and going out of your way to help her, maybe you should let the doctors decide what she needs. It may have scared her primary a bit to be given a list of treatments that was printed out so he told her to go back to her onco. (I once posted a photo of a framed photo that said "Please do not compare Google to my medical degree." LOL.....
Since I do not have a regular dentist, when I needed dental work after my tooth just broke off (I looked like a hillbilly), and I am on medicaid, I had to choose a dentist. It takes 30 days to switch to a new dentist. Once they learned from the forms, that I had cancer, three of them would not work on me (medical liability fear, I assume). I had to call my onco in tears saying I could not find a dentist to work on me. She then wrote me a letter telling any potential dentist that I was okay to have work done on my teeth and if they had any issues, they could contact her. When I called the next dentist (60 days without a front tooth), I explained the situation and told them I had a letter from my onco. This time it worked.
Many drugs are used off-label for other causes, such as gabapentin for nerve pain. I used to be given seroquel for insomnia at 50 mgs. for sleep but it is also prescribed for people with bipolar disorder at 600 mgs. So antidepressants and other drugs are also used for other medical issues. If she is at a cancer center, she would ask to be referred to a palliative team. As part of my working with the palliative team (in conjunction with my onco), I also have to see a psychiatrist which I meet with on Thursday besides my regular onco visit. They are both at same location. So its all set for the same day since Medicaid does not provide car service if you are going just for therapy. So I have that and then my regular onco all on the same day (going to be a long day).
I think you need to let the doctors decide what she should be taking, and not questioning what they suggest. Depending where she lives (UK is different about switching oncos), and type of insurance she has, she should be able to switch. I am surprised her onco did not give her referral to a pain specialist. It may be because he does not want to look like he is referring patients to a colleague's pain specialist practice so he wants the patient to choose her own.
I think maybe having her bring a printout to her PCP about what treatments or medicine should be used, may have scared the PCP off a bit.
Although you are going out of your way for your friend (I wish I had a friend like you), you need to be careful about what you think about what they suggest for treatment. Gabapentin is used many times for pain. Just because you found out it is also used for seizures in higher doses, many cancer pain specialists prescribe this, along with opiate pain meds, for cancer pain. I do not think you should be doing research for your friend and getting alarmed bc of what you read. That is the pain specialist's job to determine what to give her. It alarmed you bc you read it was given for seizures, but you were not aware it is also used by many pain specialists for other types of pain, related to cancer. And in lower doses, also for insomnia. My friend in FL is prescribed it for restless leg syndrome.
Also as my onco and pain specialist mentioned, the patients are supposed to read the information pamphlet that comes with the medication (I was like, it is so tiny you need a magnifying glass, but you can google any side effects.) Even medication such as percocet you cannot quit suddenly if you have been on for a while. You need to wean down such as with the gabapentin.
Nobody on here is a doctor and what works for one may not work well for another. There are so many variables, such as the health of the person, any other meds they may be on, etc. I do not think you should have her questioning what the doctors are advising her. Before they even prescribe something for you, they will ask and should know every single med that she is currently on or was prescribed in the past. So it is better to stick to what the specialist says instead of asking for advice from here bc like I mentioned there are too many variables involved.
I do not print out and bring to my onco or pain specialist things from the internet that I think they should try. I think they may find it off-putting as they are the doctors and specialists in that area and would know better.
Her present doctor may not choose to refer patients to a pain specialist himself bc he may think people will think he is favoring one over another so it seems that he feels she should investigate and choose a palliative team and care specialist on her own that may be closer to home or was recommended to her. He then would have to send her records over to the pain specialist she chooses. One that works with cancer patients. They will have her fill out a form and they will get her records. I am just lucky to be treated at a very large cancer center that has many different doctors that are all in the "family." But I was also told I could choose my own physical therapists and I choose one that is already part of Maimonides just because it will be easier and they can access my online records. The fact that you are questioning the use of gabapentin shows that you are not aware that it is used for cancer pain (with me lower back.)
You may want to help her by researching pain specialists or physical therapy centers, but I do no think you should be advising her on medications they suggest because they know what they are doing as medical doctors. You read that it is used for seizures but it is used for many other purposes such as other meds are used off-label for other conditions. Many doctors do not want a patient to come with with info she found on the internet about her condition. That may have scared or annoyed the PCP a bit so he told her to go back to the the onco. I do not go to my PCP for anything related to the cancer and my onco will advise me if I am complaining about something that she feels is not related to the cancer and she will advise me to go to my PCP.
Nobody should have to suffer in pain. Maybe instead of suggesting what meds she should or should not be taking or telling her information from what you read, it is best to let the doctors do that and you can help her by finding pain specialists and psychical therapists that accept her insurance and work with cancer patients. And then let them do their job.
Both my onco and pain specialists will tell me a bit about the new medications I am put on, but as they both said, it is also the patient's responsibility to read the labels that come with the meds they are taking.
She should be able to choose to go to a different oncologist without a referral. Here in NY and with Medicare/Medicaid, I am able to choose or switch oncos if I want to. I do not need a referral from my present onco. I hope your friend is able to find an onco at a large cancer center that has all these different types of care in one place.
My onco also referred me to a cancer nutritionist that was just hired at the Cancer Center. So many cancer patients want to see her (major weight gain from these drugs) that although she booked an appt. with me to see her, I have to wait until March before she was able to get me in.
Aamkearns, thank you for your very thoughtful sharing and important suggestions! Yes, I agree. We are not docs and they are trained to do the prescribing.
Friend hasn't taken any printouts to share with either doc. I printed out info and posts for friend and hubby to read and consider.
However I have learned that making a list of questions to take to doc visits has helped me get answers and with doc's limited time/patient, it helps me remember my biggest concerns to have something to refer to.
Loved the sign you mentioned and totally agree that no doc would appreciate being "compared" in any way to a Google "doc" or being asked about some drug advtzd on tv. vbg
Also since 1st posting, I've learned that Gabapentin is prescribed for many conditions and for her it was her nerve pain. Just think it might be helpful for her cancer doc to know that she was once treated for seizures.
Barb's pcp has been wonderful; immediately referred her to oncologist at 1st sign of lump and ff cancer treatments, has made to other immediate referrals for complications. The big concern is that the oncologist denied her questions and requests for possible help with pt, massage, pain mgt, bra suppt... other treatments telling her he didn't do that and she would have to live with the pain. My personal opinion is that an oncologist that would be that dismissive ought to be boiled in oil! Will be their decision about changing and perhaps the visit in March will help them in whatever decision they make.
Last week, because of increasing swelling, hubby called for an oncologist appt and was told: she has tests and a visit coming up in March. He didn't press; I would have. Another trip to pcp who put her on antibiotic for cellulitis.
Again, sincerest thanks for all you for all you shared and for taking the time and effort from your busy life to do so. Grateful.
I think we do have to question and push our doctors. They are human after all and do not remember everything. Until they know you real well, one persons’s I am in pain statement may not be the same as another persons, even though the doctor may think so. If there is something going on like cellulitis you can’t just say, ok, I’ll wait until March. I’m a nurse, I don’t accept everything a doc says, I’ll argue! We all need to be our own best advocate, or have someone that can do it for them, like you are doing Flower!
I especially appreciate your reply, Red71, because you wrote as a nurse and yesterday was a particularly discouraging day. By day's end, oncologist's office did not call to schedule appt.
Friend said that they would be seeing pt for the adjustable sleeve fitting on Thurs. I was alarmed and cautioned that no one should be manipulating her arm until she had 1st seen oncologist and healed from cellulitis.
Emphasized that oncologist did not know of her hugely incr. swelling, her cellulitis that sent her to ER; nor about the secretion.
Her response was: Doc won't do anything about it; he didn't last time with the pain. Shocked silent, finally said: Then it may be time for you two to decide to change to another oncologist. Cellulitis is dangerous and can be life threatening. You may be hospitalized or worse if you wait 3 1/2 weeks to see your current doc.
I know she feels lousy and is in great discomfort. She is also very good at denial, ignoring heart probs that led to triple bypass; hip surgery until she could barely walk; and waiting far too long to have the breast lump examined. I can only believe it must be a very deep seated fear that prevents her from seeking medical help sooner.
Thank you for listening. She is the patient and ultimately responsible for her choices. There is no one else I can share my concerns with about this and now I can just let this situation go/develop as it will because I have done all I know to do. Off to do some physical work, cutting back perennials on a windless, sunny day. Thanks again.
I would push her to see her pcp at the least. You are right, she shouldn’t have physical therapy but maybe pt will tell her that and tell her to go see the doctor. It’s hard not to be in charge when you know you are right. I have another friend who is frustrated with her friend not doing what the doctor said and getting herself in bad medical problems. Oh well, we do what we can. I’d cut back some perennials too but it is 39 degrees this morning, although not raining!
Thank you for your support and for commiserating with me Red71. As I replied to Aunty Jane, I realized yesterday that it was time for me to back off and change my focus.
Working in the yard is my favorite "sport" so happy to meet another gardener! Bulbs here are confused by erratic temp changes so daffodils are in bloom; both hyacinths and tulips above ground...at least 6 wks ahead of the usual. This morning, temp is 32..Go figure. vbg
Where do you live? I’m in the Portland, Or area and your weather sounds like ours. Our bulbs are up, not unusually early, but we have had a few sunny days and without clouds, the temp has dropped to freezing or almost freezing overnight. The bulbs are pretty hardy but I hope that other emerging buds are ok.
Oh, my, you live in a beautiful part of the country. I am in west Texas, pretty barren and arid. Although we complain of lizard skin from the dryness, I am happy for mostly sunny days and dry heat. Zone 7 for plants but the diff bet. 7a & &7b means our capital Austin flourishes with tons of varieties of plants, more trees and water while we celebrate dandelions and zinnias. vbg
Hello friend...everyone should have a friend like you who is also such a strong advocate.
I have right arm lymphedema as my mastectomy was on that side and 18 lymph nodes were removed (10 were cancerous). During a subsequent reoccurance years later, I had radiation front/back of my right shoulder which further damaged lymph system and developed right arm lymphedema. I started out having to use compression bandages, specialist did manual lymph drainage and months later was able to transition to compression arm sleeve and a night-time compression arm garment. I do manual lymph drainage exercises which you can find on searching internet and video on youtube.
In recent years I've had 4 bouts of cellulitis - the first time I had an injection of antibiotics and oral meds which knocked it down. Second time it was acute - woke up and my arm was so hot it felt like it had a fever even though my body temp was normal. And it was so red it started turning purple. I went to ER and was admitted hospital stay 3 days - 14 bags of IV antibiotics followed by 14 days of oral antibiotics.
My oncologist sent me to an infectious disease doctor - he said when you have lymphedema, your skin is thin and compromised. I didn't have any cut or scratch but he said you can have a tiny microscopic tear i.e. dry cuticle and bacteria can get in that way and cause cellulitis. He gave me a prescription of 14 days antibiotics (Augmentin) to keep on hand in case I notice redness, pain, swelling -to start on it immediately. And if it's not better within 24-48 hours to go to ER for IV antibiotics.
Also a few tips he shared...shower with antibacterial soap i.e. Dial. I also keep antibacterial ointment on hand and every night I rub it into my hands/around my nails/cuticles. Other tips-don't lift anything heavy with affected limb, don't fly without compression garment, don't have regular massage on that arm, blood pressure, injections on affected limb, don't use bare hands when touching soil/in the garden, flowers, etc.
I can’t speak to pain meds as it wasn’t needed in my case. But it is bad enough to have lymphedema which has no cure...then encounter cellulitis which can lead to serious consequences if not under control quickly.
Good luck and God Bless...hope your friend finds the help she needs...you are an angel by her side
Thank you Aunty Jane for your kind words and great suggestions. We just experienced a scary time Saturday with the Cellulitis. Will be sharing your post with my friends.
Hello again...just read your update and reply to Red71 as well as your separate post on your friends cellulitis. Anyone fitting lymphedema sleeves should know not to do this until cellulitis infection is completely cleared up. Not only can it skew the measurements but further damage the lymph system in that limb. As for her oncologist not being responsive, can you call another cancer center or oncologist to make an urgent appt for a second opinion? Or is there an infectious disease doctor in your area she can see? Even if she has to pay out of pocket it’s worth it. I know firsthand that cellulitis can lead to serious consequences and dealing with cancer treatment/weak immune system makes it that much more complicated. Good luck and prayers the situation improves quickly.
Thank you, AuntyJane. A search revealed that the occp pt guy they will see Thurs is connected to the hospital where she received her surgery and treatment. I can only hope and pray that he has the lymph./cell. exp. to not attempt any fitting or manual manipulation until she is completely healed.
My neighbor called her daughter, an ob/gyn out of state and told her the basics. D.'s first words after listening: She really needs to change oncologists; she is in a dangerous situation.
With both your post and neighbor's report, I begged them not to allow manipulation.. and to please "seek a second opinion with a diff oncologist/infect. dis. doc".
This really defies belief as I type but was told that no call came from the oncologist office by close of day, Tues. I do know of a time when friend told me later that her pcp's office had called and left a message which she didn't return so I can only wonder if something like this might have happened with the oncologist. If in fact his office didn't call and hubby didn't call back, I'd crawl on my tummy to someone else. They also plan to keep the March dates for tests and ff-up visit with oncologist.
I've shared all I can and know to do. I am not a spouse nor adult child. Told them that I may have gone too far with sharing and was backing off from anything medical; I love them and to let me know if there is any way I can help.
Sincerest thanks again for your post, helpful info and prayers!
I do t think you have gone too far with the sharing. We don’t know who they are! But we are a caring group and really hate to see someone not getting the care they deserve! I have encouraged friends to seek new doctors several times....and encouraged another to quit doctor hopping because they look at that and think you are after pain medications.
Thank you, Red. These lovely friends are educated, intelligent people who are johnny-on-the-spot with offers to help others so I'm hoping I haven't said too much.
Finding the kidney suppt grp here soon after my stage 3 CKD diagnosis was/is wonderful. Like this group, it makes such a terrific difference to be able to post and know that others can relate or understand without "preaching, playing doctor or being judgmental" in any way.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Primary vs. Mets and Surgery
Good News for HER2 Positive MBC Patients!
Anyone develop a rash with Ibrance/Letrozole? 
Stage IV MBC
New Oncologst
