some more positive words to help with fear of pain

alisathemom

I dont mean to trivialize or minimalize others' pain, but befor my bilateral mastectomy last monday, i was scared out of my mind reading some of these posts. I came here like many others, trying to quickly come up to speed on what to expect in terms of my breast cancer surgery. Granted, I am still early in the process, but we need to do a much better job sharing what are our positive experiences, including getting a handle on our pain. I am only going to talk about pain related to my surgery, since I have no experience yet with adjunctive therapy or the full reconstruction process, each with its own unique challenges.

I was diagnosed with an unusual presentation of invasive lobular carcinoma on Valentines Day. I had a very large mostly benign mass that started to seem to grow very quickly late last year. I had a diagnostic mammogram, ultrsound, ultasound guided core biopsy, bone scan, skeletal survey, MRI, and other tests while assembling a team of breast surgeon, plastic surgeon, and medical oncologists. I chose Charles Sammons Cancer Center at Baylor. Insurance has covered everything so far with the exception of a 1000 deductible (met after my core biopsy). I w as q u ic k ly precertfied for my hospital stay, bilateral mastectomy (one breast prophylacticly removed), and reconstruction of both breasts (this is the law in the US, that a woman has the right to symmetry and reconstruction, so insuance cannot deny this).

The SNB injection: no EMLA preparation. I did not fel anything other than a warmth from the tracer. 2 inject i ns were made around the mass about 2 hours before surgery. The injection did not hurt at all. Seriously. I didnt feel the needles go in at all. I floated ou if there on a cloud of happiness that it was over and didnt hurt.

Next my husband and I drove over to Baylor Uptown in Dallas and sat in a waiting area for about 5 minutes. We were able to check in online from home. We were escorted to our pre surgery space.I was given a smock, compression stockings, slipper socks, and a warm blanket. I handed my clothes to my husband and geared up. I was visited by a series of nurses and all my doctors to confirm th  procedure, allergies, etc. Everyone was warm and car i ng. I was given a shot of lidocaine and had my IV inserted into my hand. I hate IVs but this one didn't hurt. 

The plastic surgeon came in and marked all my insision lines. I was told by the nurse to give hugs and kisses to my hubby as it was time to go. This was the worst part of the whole ordeal as my husband finally broke down and started sobbing, whi h made me cry too.

Anyhow, i was wheeled into the operating room and my anesthesia was started. 

My eyes popped open 4 hours later. I was constantly asked my pain level and given morphone accordingly to establish my dose. I was more uncomfortable then any serious pain. I felt beat up and aching, but not in any kind of intense agony or even major pain.

In my room, I was visited every 2 hours for the first 12 hours or so  pain management and I just took my morphine and hydrocodone pills preemptively to stay ahead of any potential problems. I had none. By 10 that night I was assisted into sitting up, going to the bathroom, and then taking a walk. No pain. Just tighteness and uncomfortable. I had a turkey sandwich an hour later.

The next day, my BS came to visit and told me she wanted me up and about as much as possible. We spoke about the SNB (no evidence so far of cancer in nodes, but ill know more next week). The mass was huge and purple. Ew. But with ilc, larger masses are common. In addition, i was told to do arm extensions with locked elbows and a full stretch 10 times each hour if possible.

So it is now 5 days later, I have been up and about, have full mobility in my arms, eaten (i only threw up once after gobbling up 3 bowls of beef stew), and have only taken ibruprophen since tuesday. I feel bruised, but again, no pain. 

So everyone is different and has different levels of pain threshold. You may have a lot, some, or no pain worth mentioning. Pain control is important and dont feel bad taking your rx on a schedule for the first few  days. That is what it is there for. Anyhow, I hope my experience alleviates some of the fear you may be having. You are strong and smart and will come through this. Much love, Alisa

sandra4611

Glad you are doing well. Not everyone has an easy time of it, but many end up saying it wasn't as bad as they expected. Fear of the unknown makes the waiting so hard and the imagination runs wild. Sounds like you had the blue dye injected for your SNB rather than the radioisotopes. The dye doesn't sting. Wish I'd had that. Instead I had two injections of the radioisotopes in the areola around both nipples and it was a big bee sting. Fortunately it goes away in 5-10 seconds. Your pain control team did a good job keeping you comfortable after surgery. Sounds like you had exceptional care! I'm surprised you have so much mobility after only 5 days! You must be superwoman! I wasn't allowed to raise my arms above shoulder level for several weeks. Congrats on such a good outcome. Happy healing! 

Ariom

Hi alisanandjoel and Sandra. I came here to these boards, before my surgery wanting to get some  insight into what to expect from the surgery and the SNB. Unfortunately, I had been terrified by a couple of people who felt the need to "share" their awful experience of the SNB, even here, there were a lot of horror stories that didn't do anything to help my fears.

I couldn't believe it, when I turned up very early for my appointment for the SNB and the young man who was going to do the procedure took  the time to explain that it may well be painful, he couldn't administer any anesthetic with the Radio Active tracer, but he would do whatever he could to make it as easy for me as possible. He also told me I could call him any name I wanted, that he would not be upset! LOL He said he would talk me through the whole thing, and that is exactly what he did. I had the Isotope injected by him, 3 shots into the nipple area, and then the Blue Dye was administered in surgery by my surgeon. I didn't feel a thing, I even asked him after he had finished when it was going to hurt and he told me it was all over, we just had to scan for the node. It took a few scans, and some time, before my sentinel node lit up, so that meant massaging the fluid through till it  reached the node. When it finally lit up that lovely young man ran out holding the Xray high in the air and gave me a WooHoo, we've got it!

I had a very similar experience to alissa, I felt so incredible, after realizing there was no pain, and all that fear had been for nothing. I felt like I was bullet proof! I arrived in pre op feeling fantastic, and was able to joke around with the surgical team, right up till the lights went out.

When I woke, I felt great, granted I hadn't had any recon and only a Uni not a BMX. I didn't have any pain meds at all, not then or later. I spent the whole night up and walking around the halls of the Hospital and drinking tea with the nurses. I was very surprised by how good I felt. My surgeon visited me that night and then arrived early the next morning, as did the anesthetist to check on me. The Surgeon  took off the bandages, told me I looked great and to go home.

I had a lovely young Nurse assigned to me, who asked to come in while I had my shower, I told her I was fine, she asked again and said she would face the other way if I wanted. I asked her why she wanted to come into the shower and she said that ladies usually cry in the shower and she didn't want me to be alone. I was so moved by that, but explained that I really was fine and I wasn't going to cry. I had a shower, got ready and left the Hospital about 16 hours after I had arrived.

I had a few hiccups in my recovery, an infection, seroma and some cording, but nothing very serious and no pain, just strange sensations.  

It is very true that everyone has a different experience, and pain thresholds are different, but I took great pleasure in telling the ones who had scared me witless, with their very over the top and graphic descriptions, of the pain they experienced, that my experience was not at all like theirs!

I think it is fair to say that a procedure was unpleasant, but dragging up explicit descriptions to describe it is unnecessary and cruel.

 

alisathemom

Hi there! Just to confirm, it was the radioisotope tracer I had injected. My surgeon told me the most important thing I could do the day after surgery was to hydrate and do my arm exercises. Of course, I was cleared for this and do not have incisions in my armpit. I dont consider myself any more super than any of us here I would like to think that severe or even moderate surgery-related physical pain in any signicant duration is the exception and not the rule. 

aunt_paula

It is great that your pain was less than you anticipated. I expected the same, and was also pleasantly surprised (but am seriously torn about whether to pursue reconstruction, partly because of the recovery, which I know will be very different from the BMX). I had the SNB injection with no anesthetic too, but I have a serious allergy to lidocaine and all the drugs in that class, so local anesthetics are never an option for me. If it hurt, I'd have had to deal with it anyway. LOL.