Post surgical stories

     I have to write one more story about my little surgical/medical excursion with melanoma. And there is a chance for you to tell me about your surgical pain experiences. Below is a neuropathic pain scale to use to assess your own pain levels at various times of the day. This might be useful to your medical care team. Read on below to learn more about my experiences and medical studies that sometimes document poor postsurgical pain control.

I did absolutely great after the surgery; took oxycodone doses on time for the first day, and by the second morning home, I changed to Tylenol. Even the Tylenol, I only took for that second day. By the third day I was on nothing for pain and feeling fine. I was limited because I was instructed to keep my arm up most of the time but that was my only limitation. Then about 10 days after the surgery I started getting strange sensations in the arm, in a several inch circle around the lower half of the incision. I couldn't keep my arm down at all because I started feeling pressure and tightness, and heat, and a sense of strong discomfort in this area. Slowly these sensations became worse so that I had to sit with my arm up again and I became more uncomfortable and more limited in what I could do than I was several days after the surgery. I tried an ace wrap and that helped some but it would slide around and pull on the arm tissues and make the symptoms more noticeable. I went back at 3 weeks to get the sutures taken out. I told the surgeon about my symptoms in detail trying to describe them as I have above. I told him that I had a similar pain syndrome occur after a breast biopsy many years ago and a nerve drug called Tegretol took it away in a few days. He said that my symptoms were probably just due to swelling, but he suggested I get to see a therapist at the hand clinic. He wrote "scar mobilization and desensitization" as the orders on the slip to the therapist. But when I described where it hurt to her and showed her how I could move the scar itself around and rub on the scar without any problem, she didn't know exactly what to do for me. She tried some ultrasound therapy which in one area irritated the arm more. She did give me some silicone gel sheets to put on the scar to soften and flatten it and that worked well. Also she gave me an elastic sleeve to wear on the arm over the scar and that did help me keep the arm down a little longer before it would start to burn. But the desensitization rituals she showed me of massage, rubbing with a towel and vibrator use over the sensitive area didn't do anything to help and was quite uncomfortable though I was a good patient and did try them. Meanwhile I had spoken with my general surgeon son, and he asked if I was on either of two drugs that he uses for just this purpose: Lyrica (pragbolin) or Neurontin (gabapentin). He said he uses these drugs quite often to treat these types of nerve damage symptoms. He said that some of his surgical partners even use the medication preventatively right from the time of surgery with good success.
     I researched on the Internet and found articles that support the use of these drugs for postoperative neuropathic pain and proof that they reduce narcotic use and seem to prevent this type of pain development. There are all kinds of elaborate theories for why these pain syndromes develop. One postulates that the nerve firings recruit more pain nerves in the spinal cord and even the brain until there is a distribution of the pain even to more distant points from the surgical injury. Many people then go on to develop chronic pain syndromes that become more and more difficult to treat. I could identify with that myself both times I have had this problem. With the strange discomforts in the arm or chest wall like last time, I would catch myself grimacing with my face. Similar muscle contractions were occurring in my shoulder and neck muscles and then pretty soon the muscles are aching just from being tightened in discomfort for long periods of time. Now pain messages are coming from sites distant from those touched by the surgeon. Tense shoulders and neck muscles lead to headaches. A general sense of hopelessness and depression creates an inability to move, exercise, eat, or take an interest in usually pleasurable activities. Then sleep disturbance can enter the picture worsening all of the above. I could see this cascade starting to develop in my own situation. Therefore, the idea is to catch the neuropathic pain early before this cascade of events has gotten started and becomes habitual.
     I called the surgeon 1 week after the sutures were removed and told him I was no better, perhaps even slightly worse. I received a messsage back that as far as he was concerned I could go on a Tegretol like medication but I should call my primary care doctor to get the prescription. Apparently he was not comfortable prescribing these kind of drugs. So I made an appointment with my primary care doctor and saw her today. Indeed she was willing to prescribe a newer version of the Tegretol that had worked for me, one with fewer side effects. So I started this medication today. We will soon see if it worked as well as last time.
     All of this led me to research several medical articles on the Internet about treating post surgical pain. First I learned that several medical articles indicate that acute postoperative pain and then persistent pain after the acute pain should have remitted occur and are inadequately treated. An article in May, 2006 Lancet quoted that between 10-50% of post surgical patients have persistent pain beyond that of the acute surgical injury. And in 2-10% of those people, the pain is severe. These persistent pains are attributed to neuropathic pain with mechanisms similar to that I have described above.
     Another large (1299 patients) and well conducted survey following hysterectomy found that 1 year after surgery 32% of the patients were still experiencing (chronic ) pain and of these 15% did not have any pain beforehand. Of patients receiving spinal anesthesia, 15% had pain at 1 year compared with 37% receiving general anesthesia. Using a pain relieving model that extends for 2 weeks after the surgery, this incidence of chronic pain was reduced from 7% to 1% of patients in another study. So chronic pain after surgery is a common problem. It seems to be influenced by the type of surgery, whether there was pain before the surgery or not, presence of other risk factors such as diabetes, and other history of neuropathic pain, and even genetics. There seems to be a gene which codes for a lower tolerance of pain and having that gene allows manifestation of surgical pain to become expressed to a greater degree in those individuals.
         One other interesting question arose in my mind during my surgical experience and since. Many of you readers may have been asked by various members of the medical profession to rate the level of your pain on a scale from 1 to 10. Most of us whether with medical background or not have no idea what these different numbers might mean. I would venture to guess that if there were a way to measure objectively that pain, individuals would still cite a range of numbers for that same level of pain even if their pain tolerance were the same. So I researched the pain scales being used and found that there are indeed ways to make these scales more representative of the actual pain being experienced. Following are two methods to make these pain scales representative of the pain being felt. The first is descriptions of each pain level on a 1 to 10 scale. The second pain scale gets away from using word descriptions and uses simple facial features that might show the level of pain and would ask the pain victim to point out the face that represents his/her pain. Using this 1 to 10 scale I would say that my current chronic pain is mostly in the 2 and 3 level. Occasionally after having my arm down for a while, it reaches 4. When I am sitting with my arm propped up on pillows level with or higher than my heart, the pain level is usually 1. So not severe, but enough that my quality of life is affected and my daily activities are reduced.
    
The Pain Scale in words:
0 -- Pain Free
     Mild Pain - Nagging, annoying, but doesn't really interfere with daily living activities.
1 -- Pain is very mild, barely noticeable. Most of the time you don't think about it.
2 -- Minor pain. Annoying and may have occasional stronger twinges.
3 -- Pain is noticeable and distracting, however, you can get used to it and adapt.
     Moderate Pain - Interferes significantly with daily living activities.
4 -- Moderate pain. If you are deeply involved in an activity, it can be ignored for a period of time, but is still distracting.
5 -- Moderately strong pain. It can't be ignored for more than a few minutes, but with effort you still can manage to work or participate in some social activities.
6 -- Moderately strong pain that interferes with normal daily activities. Difficulty concentrating.
     Severe Pain - Disabling, unable to perform daily living activities.
7 -- Severe pain that dominates your senses and significantly limits your ability to perform normal daily activities or maintain social relationships. Interferes with sleep.
8 -- Intense pain. Physical activity is severely limited. Conversation requires great effort.
9 -- Excruciating pain. Unable to converse. Crying out and/or moaning uncontrollably
10 -- Unspeakable pain. Bedridden and possibly delirious. Very few people will ever experience this level of pain. It may cause unconsciousness.

The face pain scale.

     It is interesting to read all about these items while being affected by the problem oneself. We will see if the Tegretol nerve drug does anything for me this time. I am hopeful it will act like it did in the past.

     I am very interested in any of you who have experienced persistent post surgical pain extending out beyond 14 to 21 days after surgery. I would like to know if it had the characteristics of neuropathic pain that I described. And I am interested in how it was managed by your doctors. Send me some comments.



   

Getting Older!

Observations on Growing Older 

~Your kids are becoming you...and you don't like them

...but your grandchildren are perfect!


~Going out is good.

Coming home is better!


~When people say you look "Great"...

they add "for your age!"


~When you needed the discount you paid full price.

Now you get discounts on everything ...

movies, hotels, flights, but you're too tired to use them.


~You forget names ... but it's OK

because other people forgot

they even knew you!!!


~The 5 pounds you wanted to lose

is now 15 and you have a better chance

of losing your keys than the 15 pounds.


~You realize you're never going

to be really good at anything .... especially golf.


~Your spouse is counting on you

to remember things you don't remember.


~The things you used to care to do,

you no longer care to do,

but you really do care that you

don't care to do them anymore.


~Your spouse sleeps better on a lounge chair

with the TV blaring than he does in bed.

It's called his "pre-sleep".


~Remember when your mother said

"Wear clean underwear in case you GET in an accident"?

Now you bring clean underwear in case you HAVE an accident!


~You used to say,

"I hope my kids GET married ...

Now, "I hope they STAY married!"


~You miss the days when everything worked

with just an "ON" and "OFF" switch..


~When GOOGLE, ipod, email, modem ...

were unheard of, and a mouse was something

that made you climb on a table.


~You now use more 4 letter words ...

"what?"..."when?" ???


~Now that you can afford

expensive jewelry, it's not safe to wear it anywhere.


~You read 100 pages into a book before you realize you've read it.


~Notice everything they sell in stores is "sleeveless"?!!!


~What used to be freckles are now liver spots.


~Everybody whispers.


~You have 3 sizes of clothes in your closet ....

2 of which you will never wear.


~~~~But old is good in some things:

old songs

old movies

And best of all OLD FRIENDS!!



Love you, "OLD FRIEND!"

Your Tax Dollars in Action!

I'd like to tell you a little story about our trip into Hungary.

We went on a tour outside Budapest to the Lazar Equestrian Park, home of Vilmos, and his son Zoltan Lazar, both of whom have won championship awards for competitive carriage driving. Though Arabs

and quarter horses are used, the Hungarian horsebreeding program centers on the Lippazaner horses. At this famous Equestrian Park, we saw all of these horses and others and very entertaining demonstrations of this carriage driving and other activities of the Hungarian cowboys, called czikosak. (See photo at left).  Before lunch another activity was a carriage drive out onto the pustza (the Hungarian range). We noticed a group of young men waiting to take their carriage ride; we interacted with them somewhat because Amos wanted to take their photo. They were in a happy mood and a couple of them knew a little English. But they never agreed to a photo.  But they were clearly having a good time. After the equestrian demonstrations we were ushered into a huge dining room for our Hungarian lunch. (Delicious, see below!)

     At lunch we noticed that again there were lots of young men sitting at least at a dozen tables. I noticed that they were all "hunks." Amos asked a young man at the next table where they were all from and he said they were men from Serbia, Kosovo, Croatia, and Hungary training to be police officers. Amos asked this young man if this meant that our boys would be able to come home soon. This young man either didn't understand the question or didn't know the answer. He just smiled and sort of noded his head. The lunch was being served. A gypsy band was performing for our luncheon entertainment and after their own set, they were passing among the tables and asking for requests. Each table of the young men had requests and got very involved in singing them and clapping and generally being exuberant. It didn't bother us but we began to wonder more and more about all these exuberant young men. After we had finished eating, a clean cut gray haired gentleman came over to our table and in perfect American English said, "I saw you folks speaking English and thought I should come over. I apologize if my young men disturbed your lunch. They needed to have some time to blow off some steam." After lunch we went outside the dining hall and saw this gentleman standing to the side. We went over to talk with him again and asked him where he was from. We learned that he was from Oregon, but had not been home for 2 years. He worked for the US State Department and was in charge of a training camp for police officers. This young group of men and 2 young women had been training there for 7 weeks and would graduate in one more week. He said that they needed to get out and let off some steam and that was why they were all there today. He had been directing these 8 week camps, one after the other for the last 2 years.  Amos asked this gentleman the same thing he had asked the young Kosovan across from us at lunch: "Would this enable our young men to get out of Kosovo?" Just like the young Kosovan, this US State Department man in charge locally could not answer that question.

To the left is a photo of the performing gypsy band. When they came to our table, I asked them to do Hava Nagilah for Amos. They performed a very rousing rendition. They could very nicely perform at a Jewish wedding. When we were chatting with the US State Department gentleman, in sharing where we were all from, I said I was from Milwaukee, WI,  and that was where we lived, but that my husband was originally from Israel. The US State Dept man said, simply, "I know." So he had been doing his job, and had noted that we had asked for Hava Nagilah at the request time. Very astute!

Here is a czikos with his donkey. This segment was amusing, we could tell though it was all done in Hungarian. It reminded me very much of visiting a ranchero in Argentina outside Buenos Aires on the pampas. There was a similar segment there with a donkey and the rider not knowing which end to climb up on and always managing to mount the donkey backwards. For cowboys from all over the world, it appears that a humorous donkey segment is universal. This whole day was a very enjoyable one for us. We had no idea that such a life existed in Hungary.

Elation!!

     The plastic surgeon called yesterday afternoon and since I was taking my husband in to get a mole (I hope, a mole) removed from the bottom of his foot,  the surgeon left a message that he had good news for me. Yes, the two sentinel nodes were clean -- no cancer. And there was no residual tumor in the arm either. So the original depth of lesion of 0.48 mm stood as the total depth -- a depth that has very low risk of spread. I am still to follow up with medical oncology but I don't think there is much to do unless there will be some followup chest xray and other imaging down the road, I don't know. Anyway after this last week of surgery followed by worry, fearing the worst, a great load is now lifted from my shoulders. Hopefully Amos' path will also be negative when we get the results on Friday. Then we will both be able to heal and then get back to normal life. It is certainly amazing how quickly a very positive outlook on life can be changed for the worse with one of these medical adventures. I feel that it is very important to keep up my spiritual practices and to continue to live each day with mindfulness to maintain some of the life learning that this experience has provided to me.
     Now on to other topics in this blog. I am working on the story of our sojourn in Moldova, land of Amos' ancestors. I want to combine this with some photos. I plan for that to be my next posting here.
    

Waiting, Waiting, Waiting ....

Yes, I am waiting ... one of the hardest things to do when associated with the diagnosis of cancer.
 My wide excision and reconstruction and sentinel node dissection and excison is completed. I did fine. I was of course nervous about it never having had a general anesthetic before. My blood pressure was 174/70, a number which has quite a high systolic compared to my recent blood pressure control (since I retired). This was a sign of my anxiety. The nurse was worried about my blood sugar because it was 65, a little on the low side. I had been increasing my insulin to handle my sugars in conjunction with a reinstitution of prednisone for a vasculitis which relapsed now as well.
I took a book to the day surgery suite because I had been told that the nuclear medicine procedure that identifies the sentinel nodes takes about an hour and a half and I pictured that I would be sitting and waiting for this radioactive tracer to go up my arm to the node basin in the axilla. Yes one does wait but that occurs lying down under a camara. And the wait was only about 1/2 hour. Then they saw the nodes light up and marked them. So the whole nuclear procedure took about 1 1/2 hour but there was really very little down time which would allow reading -- only about 5-8 minutes while I sat in a wheel chair and waited to be wheeled into the nuclear medicine suite. Once I was back in Day Sugery it was bam, bam, bam -- start the IV, get the venous leg pump wraps on, the electrocardiogram monitor patches on, speak with the plastic surgery resident, speak with the anesthesia resident clarifying my history twice, getting my blood sugar checked one last time, and speaking ever so briefly with my plastic surgeon who came in to sign the left arm as the correct arm on which to do the procedure.
I told the anesthesia resident that I had received 8 mgm of Versed when I had my colonoscopy and never went to sleep at all even with the Demorol. She just commented that they had different things than Versed to use also. Shortly later the anesthesia resident said she had given me some Versed in the IV right there in the Day Surgery room and asked me if I was starting to feel relaxed as they were starting to wheel my gurney out of that little Day Surgery room. I said, "Yes, I feel a little drowsy." And that was the last I remember until it was all over and I started to hear voices around me in the Recovery room and opened my eyes. The nurse said, " Why don't you try a good hard cough; you have been clearing your throat a lot just now." I didn't know anything about that. So you do things and make sounds that you don't recall afterwards. There was a little trouble getting off the oxygen; I was desaturating with oxygen but seemed to be able to remedy that with coughs and deep breaths. I proceeded quickly back to the Day Surgery area. My blood sugar was 150 so that was OK. I recovered uneventfully in the Day Surgery room, got a hydrocodone, one pill for pain at about 130 PM after I was back in the Day Surgery suite for about 1 hour. At home by 3:45 PM and took one hydrocodone at about 5 pm and then another before I went to bed. I slept in two large periods of sleep and took another hydrocodone at about 5 am. I had some sweating from low blood sugar in the middle of the night and had to get up to get something to eat and some juice to drink. After that all I took for pain was two 500 mgm Tylenols for Thursday and then after the dose on Thursday night I took nothing further for pain. The plastic surgeon saw me Friday morning mainly because he had jury duty to do next week Monday through Wednesday and he didn't think he should wait to look at me until Thursday of the next week. He thought I was doing OK also. But he does want me to see an oncologist. I had begun to think about this and realize that the plastic surgeon doesn't want to follow up on this. There will likely be a need for imaging, maybe even CT scans from time to time and the oncologists will order this I think. So that is the likely reason for that follow up.
I wanted strongly to go to my son's home for the weekend because our 3 1/2 year old was participating in a daycare program on Saturday. My husband didn't think I should go and my son on the phone didn't think I should try to ride all the way down to Indianapolis just 2 days post surgery. But I really wanted to go. I was really feeling down and worried on Thursday and I thought that going would knock off 3 days of the wait for the pathology results. I would be with my grandkids even though I would need to rest while elevating my arm and I wouldn't be able to pick up Will at all. But the weekend would pass much more quickly and much more pleasantly. It wouldn't be possible to worry as much as when just sitting nursing my arm at home. That's what we did and I am glad that I did go. Enjoyed seeing Sam perform; he was put in the lead of the small group of children just as last year. I am sure that the teachers do this because they know that Sam takes instruction well and he will do exactly as he is supposed to do. When I am with those two little kids, I am not obsessing and I am reasonably at peace.
Now it is Monday I am back home and back to waiting. I probably won't know the results until Tuesday. Usually it takes 5 working days to get the pathology readout. I am worried about the sentinel node because the path report on the shave biopsy says that it was at least a Clark's Level IV. But this doesn't make complete sense because the depth of the shave was only 0.48 mm deep so how could they determine it was a Clark's Level IV. That level is usually 3 mm deep. I don't quite understand this even as a doctor and my son the surgeon didn't understand it either.
I keep imagining the call about my results. I imagine hearing the first words saying there is good news, the nodes are clear. Or I imagine hearing the worst that there is cancer in those nodes. Then I will have to proceed to complete lymph node dissection under that arm, a procedure that will I assume carry more side effects and more risk of post surgical lymphadedema as a long lasting complication. Also I think I would also likely be recommended to have Interferon as a immunotherapy for a year which can also produce a lot of side effects. I really dread both of these possible needs. I really am having trouble getting these vascillating thoughts out of my mind. Periodically I reach some kind of equilibrium with the statement: "Hoping for the best; preparing for the worst." Concentrating on this provides some degree of relief in my obsessional thoughts. Does everyone go through this when they have had a biopsy? Am I just a worry-wart, or overthinking the whole process like my son says I am? Or is this a function of my being a doctor and knowing too much? I just know that it is the hardest thing that I am having to go through, much harder than the pain and morbidity of having a surgical procedure.

Hoping for the Best, Worrying about the Worst.

Tomorrow I go to have definitive surgery for my melanoma. If you have a strong mental constitution read on to find out my mental ramblings during this time.
 I am scheduled to arrive at Froedtert at 6:30 AM when I will be checked in for Day Surgery. Then I have an appointment at 8 AM in Nuclear Medicine where a radioactive protein will be injected into my melanoma lesion on my arm along with methylene blue which is a dye. Then I am told that it will take about an hour and a half for these substances to migrate up my arm from the lesion to the lymph nodes under my arm. I am not sure if they follow this migration with a probe or detector or whether they take nuclear images to follow it. I will know more about this after it is all done. The anesthesiologist called this afternoon to get my medical history from me personally; he has my preop and all my preop labs in front of him. He told me to hold all meds except to take my Bystolic (a beta blocker) and the 10 mgm of prednisone with just a sip of water before I leave. I am also to take only half my usual dose of Lantus the night before and no short acting insulin the morning of the surgery. He explained the anesthesiological procedure carefully to me. My surgery is scheduled for 10 AM. I will get undressed, be put on a gurney, and an IV will be started by an anesthesia resident. Then I will be wheeled into the operating suite and a mask will be put over my face with lots of oxygen. I will be put to sleep through a medication injected through the IV. Then when I am asleep I will be entubated and monitored closely throughout the procedure. He told me that they would probably be checking blood sugar about every hour during the surgery and recovery times. The surgery is scheduled to last 1 1/2 hours. Then I will be awakened and extubated when I am breathing on my own, and moved to recovery for about 1 to 1 1/2 hours. After that I will be sent to Day Surgery to further recover for about 1-2 hours. So I will probably not be released until mid afternoon.
     This afternoon, after a call from Freodtert OR Nursing to confirm that this is all to take place tomorrow, from the anesthesiologist, and from the surgeon's office to confirm that everything is ready to proceed, It is difficult to put this upcoming procedure out of my mind. I have never had a general anesthetic before so this will be a new experience. It brings to mind the spiel that a neighbor and friend who was an anesthesiologist used to present at parties. He would pretend that he is doing a preop visit to a patient in the hospital the night before their big surgery. At that time there were very few outpatient day surgery procedures so he was usually visiting the patient in person unlike now when this is all done over the phone. This effect of his spiel in person was highly impressive for party guests but it is not very effective when now years later I am going through with a general anesthetic procedure. Now there is nothing to laugh at. His spiell went something like this:
     "Hello, I am Dr. Smith. I will be your anesthesiologist during tomorrow's surgery. I must get your medical history and will be asking about 100 questions about your health history and various symptoms that you have. We need to know all the answers to these questions because you life will be very delicately in my hands during that surgery tomorrow. We will be monitoring you very closely because lots of things can go wrong during anesthesia and surgery. We could have trouble helping you breath; you could have bleeding during the procedure or afterwards, you could react adversely to any of the many drugs we need to give you, you have an increased risk of stroke, heart attack, and other major medical complications during anesthesia and during the surgery. Our tube that we place in your throat could cause damage to your teeth, tongue, throat, voice box, and breathing tube." (Nowadays  and in reality I can vouch for the anesthesiolgist who I just spoke to and he said all these things, not quite in this blunt a fashion and he interspersed with multiple statements that these complications are all very rare now adays with the degree of monitoring that is done during modern surgery. But he said them). But Dr. Smith would have gone on: "Basicly what we will be doing is putting you into a coma utilizing several drugs and we hope and plan that it will be a reversible coma and that you will wake up." How would you like to sign up for this after this spiel? Scary isn't it? Well now that I am going through this tomorrow I can't help but remember this party stunt carried our frequently by our neighbor.
     Unfortunately, also this afternoon with my mind on my disease, I have  been reading on the Internet about melanoma, its staging, the characteristics of melanomas that are high risk to return, and what can be done to prevent such a recurrance. I have learned that treatment for melanoma that gets away from the original lesion is very inadequate. Normal chemotherapeutic agents don't work very well, and even radiation is not very effective. There are sometimes indications to use a drug called interferon which is a body product that is artificially produced and injected daily at first and then three times a week. This treats the cancer cells with your immune system. This substance is like the body product that occurs with flu illnesses and so it produces flu like symptoms and in the large doses needed tends to be very very toxic. Many people can not take the full dose due to the severe side effects and symptoms, liver toxicity and general toxicity. It is given for a year. And still with all that there is controversy in the studies whether it really helps survival. There seems to be some indication that disease free intervals are prolonged by maybe 9 months or so. Wow that isn't very much! This means that if I have a high risk melanoma -- thick in original depth which we can't even determine in my case, or having already spread to the local lymph nodes (which this surgical procedure is designed to determine) -- I have to decide whether to make myself sick for a year to try to reduce my chance of having metastasis and local recurrances or I do nothing and just take the chances that the disease will metastasize in which case other treatments are not very efffective at all and you die. Really bad idea to read all this this afternoon  before my surgery though being a doctor I knew some of it anyway.
     I am still vacillating between hope for the best, believing that this lesion isn't all that big and so it shouldn't have gone anywhere else in my body, and then the fear that it has already spread. One tends to arrive at a state of mind that you are prepared but hopeful. But this state of mind is very fragile and it doesn't take much to start a spiral of dread again. For example, my surgeon had said that we would decide on a referral to an oncologist who would recommend regarding the use of this interferon -- we would decide on this after my surgical results were known in a week. We would then know if the tumor had spread to local lymph nodes which makes it a high risk that it will recur elsewhere. But I received a phone message while we were gone on our trip from the Cancer Clinic at Froedtert Hospital that said they had received a referral from my surgeon that he wanted me to make an appointment in follow up with the oncologist. That scared me! Dr. D had said we would decide about that later but now he has made a referral. Does he know something I don't know? Does he already think that it has spread? Seeing an oncologist puts this in a whole new level of concern. No longer is this just a shallow skin lesion that needs removal and will be cured, with sentinel node biopsy being done just for safety; an appointment with an oncologist would be cancer follow up. I am tipped off my fence and my fragile positive state of mind is destroyed for a while. I need time and have to build up my dose of hope again to get through the next week of waiting for the test results. Wow, this is shitty!!!