Preparing for Surgery

Okay, so in another interesting coincidence, my special tree (and the other ones on our property) are being trimmed today, as I am making various final preparations for my surgery, which is planned for this coming Thursday!

A few weeks ago, I told my surgeon my decision about the mastectomy, and sent her a list of 30 questions about before, during, and after the surgery. She answered many of them, and referred me to the nurses or the anesthesiologists for others. The list includes questions I have gleaned from various sources, including Gilda’s club and books and articles about preparing for surgery written from the perspective of somatic practitioners who specialize in healing trauma (and preventing it). See the questions and answers below.

In addition to the preparations described below, my recent tasks include: Choosing music and guided meditations to listen to before, during, and after surgery; talking to a close friend’s sister, who has just been through double-mastectomy and has just started chemo (she sent me her drain-management camisole and belt; I am sending her some hats);  “talking” to my brain about it being okay to let go of consciousness during anesthesia (something I’ve never experienced before); “talking” to my chest to warn it that there will be pain (something recommended by Staci Haines of generative somatics); and as you’ve seen, I have been working on saying “goodbye” to my breasts. In general, I have been as proactive as I can be (which is a lot, given my resources of time, money, and emotional support); now though, even as I finish a few tasks, I am practicing moving towards surrender. Today during a zero-balancing (bodywork) session I repeated a line to myself from an old Reclaiming Collective chant, “opening up in sweet surrender/to the glorious love light of the earth,” and I definitely surrendered (to sleep or something like it).

Here is my set of questions, with the answers we’ve received, in case anyone else is preparing for this (or some other) surgery:

Questions for the medical team (breast surgeon, anesthesiologist, and nurses) in preparation for my double mastectomy without reconstruction

The surgery itself:

1. Q: How long will the surgery last? A: A bilateral mastectomy with bilateral sentinel node mapping (potential axillary dissection or additional node removal only if sentinel nodes are positive for cancer post chemotherapy – rare chance in your case) – will take 4-5 hours.

2. Q: Where and what will be cut? What will be removed? A: You will have a straight line across your chest on each side (the scars will not meet in the middle; there is a bridge of skin without a scar along the sternum). Your breasts will be removed along with excess skin and nipples. Sentinel node mapping will be done on each side and the number of sentinel nodes is not known until the day of surgery – but on average is 2 nodes per side. See the website – Breastfree.org, it has good pictures of mastectomy scars.

3. Q: So there is no cutting of muscle or muscle lining? A: “Muscle lining” is the fascia – the white “gristle” -it’s the covering of the breast, protecting the muscle from the breast, and it will be removed, because the muscle no longer needs protection from the breast when the breast isn’t there.

4. Q: A woman at Gilda’s club who had a single mastectomy said they deliberately left a roll of fat below the breast to help hold a bra in place, do you do that? A: No.

5. Q: I plan to NOT do reconstruction, and want to have as neat and tight a scar as possible, i.e. minimize extra skin flaps, dog-ears. Is there anything you do differently to accomplish this? A: I do not do anything different other then ensure we have removed enough skin so the scars lay flat.

6. Q: Scar orientation – can I pick cuts/scars on an angle instead of horizontal? Are there any downsides to this? A: You can but they are usually “flatter” if horizontal.

7. Q: I have apparently developed an allergy to adhesive bandages that are left on for more than a day. What can we use instead of paper/adhesive stitches? Nylon stitches? A: I use an inert stitch called a Prolene in the skin which is removed one week post surgery. I do use steristrips to cover the incision – reactions when you are off chemotherapy is rare and we will ensure that all the “soap” is washed off prior to placing the steri-strips – this is usually the problem, that tape is applied with the soap is still in place. Note: I pushed my surgeon on this and she gave me some steristrips to take home and try, to see if they would cause a reaction without soap. I wore one for 4 days with no reaction!

8. Q: When will the port that was installed for chemo be removed? A: It can be removed at surgery. You’re not HER2 positive so you won’t be getting infusions after the surgery. It will not require another incision to remove, it can be removed from below after the breast is removed. Before & after the surgery:

9. Q: What are the protocols currently being followed around surgery? See recent Wall Street Journal article on changes in surgery protocols (carbos 2-3 hours before in drink, pretreated for pain with painkillers and epidurals, only necessary IV fluid during surgery, walk soon after surgery, can eat soon after surgery) A: These are protocols for surgery involving the abdomen. For breast surgery you will be up and walking that afternoon; receive minimal fluid as there is minimal blood loss and eat that evening. No food or drink after midnight the night before, for a morning surgery. (I later learned also – no Vitamin E or Ibuprofen for 7 days before, and that I have to shower with special soap both the night before and the morning of the surgery).

10. Q: Specifically on the anesthesia – what drugs and processes will be used, and how much say do I have in what is used?

a. The cosmetic surgeon talked about a nerve block that has better outcomes for cancer as well as surgery itself.

b. I have heard that “Preemptive anesthesia” or “preemptive analgesia,” i.e. local anesthesia and/or Tylenol in addition to general anesthesia, has been shown to greatly diminish post-operative pain.

c. Unless there is a medical reason it is important, I would prefer not to have Versed or other drugs that impair memory. I use meditation and other methods to control anxiety and would prefer to be able to consciously process and use psychological healing techniques if necessary for any memories I do have of the surgery.

A: Pre-emptive anesthesia/analgesia is only if you don’t have the nerve block. We would recommend a paravertebral block; this is a “nerve” block for the chest that works very well for patients undergoing breast surgery and is something I strongly recommend. In addition to the block you will need a heavy form of sedation due to the length of the procedure. This usually involves the use of Propofol for anesthetic effect. I am happy to have you discuss your concerns with anesthesia if you would like. We have had very good success with a quick return to “normal” with the paravertebral blocks and in fact greater than 80% of the patients do not require narcotics after surgery with the blocks; though a bilateral mastectomy with bilateral sentinel nodes is likely to need some narcotics in addition to Tylenol. The risks of the paravertebral block are to the lung because it’s near that, but very small with a well-trained team. They don’t have to get you too far “under.” You will still need a tube in your throat, due to the length of the surgery for a double mastectomy; it’s called an LMA, for laryngeal mask airway. It causes some throat soreness afterwards but not as much as a breathing tube that is used with general anesthesia. Propofol is intravenous. It is amnestic – you won’t remember anything. A randomized trial in Cleveland isn’t done yet, but evidence shows that using the paravertebral block without paralytic gasses reduces the chances of cancer coming back, due to less stress on the body.

11. Q: Can my husband, my sister-in-law (an internal medicine professor at UCSF who is coming to support me during and after surgery), and another friend stay with me until I’m no longer conscious? A: They will be in the room with you until they take you to the “block” room. The block has to be done in clean conditions and the least amount of people present is recommended. From the block room you will then go to the operating room.

12. Q: Can I request that any talking in the operating room be reduced to the necessary and positive or neutral? (This is because some people believe that the patient’s unconscious is highly open and suggestible during anesthesia and I’d rather be safe than sorry about possible psychosomatic complications that could result). What is the best way to request this of the team? I’d like to be treated like a person, not an object.  A: As a teaching hospital the majority of the conversation is around the educational aspects of the operation or anesthesia or conversation with the nurses about the items/specimens that are being removed. I will quiz them, teaching them, ask them. I play 70s & 80s music usually, to keep everyone alert. You don’t want me to be thinking of you as a person, you want me to be mechanical, so I can do my job. In order to get a sense of what it will be like, you can see the recent WISC channel 3000 special with me doing a double mastectomy. 

13. Q: Am I allowed to wear specific items into the OR? A: The nurses will review these issues with you as well

a. Q: A hat (to keep my head warm in cold OR)? A: Yes as long as it is cotton and has no metal/nylon; but we normally wrap your head in a warm towel.

b. Q: Headphones to play music or guided meditations? A: Yes until you are asleep – you can’t have any metal next to your body because the electrical cautery device used for cutting can cause burns; but some headphones are plastic and can be left in, or wear bigger headphones off ears; be aware you can lose whatever ipod they are hooked to. I would check with the nurses when you come to clinic. (The nurse we spoke with knew nothing about this and was not helpful; however the anesthesiologist was more supportive. My stepson Sam also discovered these headphones that come pre-loaded with special music designed for surgery, and I spoke with the founder, clinical musicologist Alice Cash, PhD and am going to give them a try).

14. Q: Are there any complementary medicine modalities offered immediately before or after surgery (e.g. acupuncture/massage/reiki?) A: I am not aware of any that are offered in the pre op area at this time. I know patients do bring “health coaches” for mindfulness prior to surgery but because of the risk of infection with too many individuals in the pre op area we would recommend massage or acupuncture be done at home prior to surgery.

15. Q: How many of my companions will be allowed to be with me in the recovery room? A: Recovery is done in a room without companions; only nurses until your heart/lung and breathing function are felt to be back to normal. Then you will go to your room on F4/4 where they can be with you.

16. Q: What are the standard procedures to address side effects of anesthesia in the recovery room, and how much say do I have ahead of time about them? Specifically, I have heard that trembling is common while emerging from anesthesia. Some people believe this is a natural part of the healing process. Is there a way to request minimal or no medication to stop this unless I request it, as long as it is not so severe it is causing risk of injury/suture damage? A: This is rare with the blocks.

17. Q: How long should I expect to stay in hospital? A: 1 or 2 nights depending on how comfortable you are with the drains which will be under both scars and once your pain is controlled.

18. Q: What unit will I be on? A: F4/4 usually depending on the “capacity” of the hospital that day.

19. Q: How and when do I arrange to have my acupuncturist – Amy Crikelair  – treat me in the hospital post-surgery? (I’ve been seeing her in her private practice; she also works at the hospital already with oncology patients). A: Infection post operatively is our most significant worry in this day and age of “staph and strep” infections in the skin. I would not recommend acupuncture that will be done near your scars or chest until a few days after surgery. I am certainly open to its use post operatively but would need to ensure that there are no needles that would be placed on your chest while you have healing scars and drains. A clinical trial of acupuncture at Duke showed it was very effective at reducing pain, that was before the paravertebral blocks.

20. Q: What kinds of complications or side effects might I experience in the short, medium, and longer term? A: Bleeding and infection are the short term complications. If we need to do an axillary dissection because of positive sentinel nodes then lymphedema is a risk.

21. Q: How much pain is likely? What pain medications am I likely to need/want? Is there an expert in pain management available as part of the team if needed? One book recommends a palliative care specialist. A: Oxycodone. Palliative care specialist is rarely needed when you are not doing reconstruction. The sites where the drains are coming out will be irritated.

22. Q: Do I need to bring something to cushion my chest from the seat belt on the ride home? A: We provide you with a special heart-shaped pillow made by volunteers.

23. Q: What is involved in drain management? A: The nurses will describe this when you come back for your Care Wear appointment, come in to talk to the Nurses too. (We learned we have to have a special camisole to hold the drain bulbs; we have to keep them under suction, and empty them and “strip” the tubes 2-3 times/day, keeping a record of the fluid amounts).

24. Q: What kind of help am I likely to need at home? A: Minimal after the first 3 days once you are used to the drains. (People who have been through this surgery say a lot more can be needed, though the detailed information about this that I’ve encountered is from women who also had the first stage of reconstruction done at the time of the mastectomy). See for example this great website where she begins by saying: “most surgeons have not experienced the surgeries they perform, and therefore have limited knowledge about what it’s like to live through the experience. They are experts in surgery and medical knowledge—not in life after a mastectomy.” Here’s the big shocker to me: I may not be able to wipe my own butt for a few days. I’m thinking of buying a device I’d never heard of before – a butt-wiping stick like this one.

25. Q: What levels of activity are allowed/ possible/ forbidden, for how long after surgery? Specifically, how soon should I expect to be able to do the following:

a. Feed myself: A: that night.

b. Use a laptop computer in bed; A: that night

c. Go up & down stairs; A: that night

d. Cook A: (whenever you want!)

e. Exercise (dry land) A: we can review what is allowable by week – first week walking and stationary bike; then it can progress from there.

f. Swim A: usually 3 weeks

g. Is there PT in hospital/ prescribed outpatient? A: OT will visit you in hospital day after, decide what you need.

26. Q: Is there equipment that might help at home that we might want to consider buying or renting, e.g. hospital table for bedroom? A: Care Wear will have the camisole you will need, you will make an appointment to be fitted. (again I am taking my surgeon’s answers to these last couple questions with a grain of salt!)

27. Q: Are there things to do to care for incisions to minimize scars later? A: I can recommend scar creams (Mederma) once the stitches are out. (We got some Mederma, and I tried it on the scar from the port – but realized it is too-strongly scented for me; I’ll be going to Community Pharmacy soon to look for something else. (Active ingredient is allantoin, apparently a common component of non-primate mammalian urine, and the comfrey plant).

28. Q: When do we have follow-up visits – drain removal, etc.? Can we schedule these ahead of time? A: Usually 10 days after surgery; drain removal and stitch removal will likely happen at the same time.

29. Q: How vigilant do you feel you need to be about the lymph nodes given the positive MRI results? A: Will still do sentinel node mapping. If the first ones are positive then will take them all. Slim chance of this. To do the mapping, a radioactive dye will be injected and x-rays taken the day before the surgery.

30. Q: When will we know the results? A: I will call you with pathology report.