Priority 23 from the Post Mastectomy Breast Reconstruction PSP

UNCERTAINTY: How many future surgeries should patients expect with each type of surgery? (JLA PSP Priority 23)
Overall ranking	23
JLA question ID	0109/23
Explanatory note	Not available
Evidence	Early and locally advanced breast cancer: diagnosis and management Evidence-based recommendations on diagnosing and managing early and locally advanced breast cancer. NICE guideline Published July 2018
Health Research Classification System category	Cancer

Extra information provided by this PSP
Original uncertainty examples	Knowing the timelines and if there will be any restrictions with my athletic lifestyle ~ I think a timeline needs to be provided to mastectomy patients with reconstruction as to what exactly is allowed at which week i.e. range of motion, lifting exercises etc ~ What to expect going forward?..... ~ Recovery took MUCH MUCH longer than expected. Definitely a lot longer than the surgeon suggested. Get real timelines from patients. I was told to expect to be out of commission for 6 weeks by patients and this was accurate. …. Also I spent a week recovering in hospital and a lot of the nurses on the ward were not familiar with my surgery and one tried to make me sit up in a chair right less than 12 hrs after my surgery and I became quite dizzy as I wasn’t ready. The frequent checks while in hospital are not helpful. There has surely got to be a better way of checking integrity of the new breast without waking the patient up every 3-4 hrs . My surgeon didn’t have as much fat as she envisioned so reconstructions is a lot smaller than thought. A discussion about a contingency plan ahead of surgery will be useful.
Submitted by	131 x Patients and Care-givers, 43 x Clinicians

Extra information provided by this PSP

Original uncertainty examples

Knowing the timelines and if there will be any restrictions with my athletic lifestyle ~ I think a timeline needs to be provided to mastectomy patients with reconstruction as to what exactly is allowed at which week i.e. range of motion, lifting exercises etc ~ What to expect going forward?..... ~ Recovery took MUCH MUCH longer than expected. Definitely a lot longer than the surgeon suggested. Get real timelines from patients. I was told to expect to be out of commission for 6 weeks by patients and this was accurate. …. Also I spent a week recovering in hospital and a lot of the nurses on the ward were not familiar with my surgery and one tried to make me sit up in a chair right less than 12 hrs after my surgery and I became quite dizzy as I wasn’t ready. The frequent checks while in hospital are not helpful. There has surely got to be a better way of checking integrity of the new breast without waking the patient up every 3-4 hrs . My surgeon didn’t have as much fat as she envisioned so reconstructions is a lot smaller than thought. A discussion about a contingency plan ahead of surgery will be useful.

Submitted by

131 x Patients and Care-givers, 43 x Clinicians

PSP information
PSP unique ID	0109
PSP name	Post Mastectomy Breast Reconstruction
Total number of uncertainties identified by this PSP.	86 (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop	2 July 2019