Saw the surgeon today. No surgery scheduled yet; I’m to have an MRI to check for anything near the chest and to check the other breast more thoroughly, and added: see an oncologist after the MRI. Surgery will be in about two weeks.
I Surgery questions.
What type of DClS do I have? Estrogen positive, intermediate grade (grade 2) DCIS. Since DCIS is non-invasive, it is by definition Stage 0, but I have multi-focal DCIS which means it covers a large area. If there is any invasive cancer, they won’t know till surgery. I have a big lesion, which increases the risk, but she still put the risk of that at 15-20%. She also was unwilling to say that the cancer is 100% curable, but puts it at 97% curable, which is the best odds she’ll give. It’s important to have at least a centimeter of clear margins; fortunately it looks like it’s in the front part of the breast so I’ll have much more margin than that.
What is my risk of recurrence? An additional 1 to 1 ½ % annually. That’s every year, not compounded. 1% chance of recurrence in the same breast, 2-4% overall chance. That’s not bad.
Will this be a radical, modified radical, or simple mastectomy? If the cancer is still in situ and not invasive, it will be a simple mastectomy with a possible sentinel node biopsy. They will check the nearest lymph node(s) (1-6) and if they look abnormal, will take them out for biopsy. If the biopsy shows invasive cancer, then they will take the rest of the lymph nodes out of the armpit, making it a modified radical mastectomy. There is no reason to take out the chest muscles, which would be a full radical mastectomy.
Will I need Radiation, if so, what effect will that have on my heart, since it’s the left chest? With a mastectomy, I won’t need Radiation pending the pathology on the sentinel node. Odds are good the cancer is still non-invasive, so probably not. If I do, I'll need to discuss risk to the heart with the oncologist. Radiation will change the skin and body parts that it affects, and that should be kept in mind as well.
Will I need Chemo? If so, I need a port – blew out a vein in less than a week last fall. Again, no, pending pathology. If I need Chemo I’ll have to argue for a port then.
In addition to fragile veins, tape breaks down my skin pretty quickly. Even paper tape. I’m to remind them of this when I go in for the surgery.
Will you be taking any lymph nodes? Most likely just sentinel lymph nodes, unless they show signs of invasive cancer.
Does it make a difference where I am in my cycle for the surgery? No, at one time they thought it made a difference, but say now that it makes no difference.
I have compromised kidneys that will require support. She said that was important to know.
I also have chronic pain, and am on a fair dose of pain killers already. How will we deal with surgical pain? It’s something they need to be aware of. I’m going to my GP tomorrow to see if I can boost my mscontin to the next dose; pain has been waking me up and that isn’t good.
I need to be sure that I have sufficient anesthesia and pain control for my size. Not a problem.
Will this be outpatient or hospital? 24 to 48 hours in the hospital. I suspect with my medical history, it will be 48. If not longer for the sake of my kidneys.
What about the other breast? Is it at risk? What will having only one breast do to my balance and physiology? There’s a lot of meat there. The other breast is at risk, but not terribly so. I can choose to have both breasts removed. That’s one of the reasons for the MRI; if the other breast is compromised then they can both come off. However, if the MRI is clean, I’m going to opt for keeping the right breast – I’d rather go with less surgery than more. That’s why I’m passing on reconstruction, although Medicaid will pay for reconstruction after cancer treatment. I can also get the reconstruction later if I so choose. The one thing to keep in mind is that if I elect to remove both breasts, I will not need to take an estrogen suppressor, and if I do keep the other breast, then I will probably be taking Tamoxifen or Arimidex. I’m also off soy supplements from here on out, since the cancer is estrogen positive.
II Hospital questions
I have back and other arthritis issues, so the traditional up and walking in the hospital after surgery is problematic. How can we accommodate my disability? She can get Physical Therapy to work with me so I get exercise without hurting myself.
Need to accommodate my food allergies, pineapple, capsicum, aspartame. That’s one for the cafeteria when I get into the hospital. However, once I am eating solid food, the family can bring my food in if that is more appealing. (I know that the food at Rose hospital is better than the food at Porter, where I stayed for my Acute Kidney Failure. I imagine I can find sufficient food to eat there for the relatively short stay.
Sufficient anesthesia for my size. Again, not a problem for the surgeon.
The surgeon seems quite competent, and got the questions that Doug had before he could ask them. She’s clearly been doing this for quite a while. She gave me the cards for an oncologist, and the office should schedule me for an MRI soonest. I got a whole stack of literature and an organizer, and I ordered an organizer from http://www.livestrong.org . She did seem impressed with my organization and self-education; I managed to follow her entire spiel after she told me I’d overload about two minutes in. She recommends Dr. Susan Love’s Breast Book; I don’t know if we can afford it at the moment – it’s been an expensive month. But I have lots to read without it. EDIT: A friend has offered to buy me a used copy.
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